My husband passed this morning. I was by his side. Had the hospital call his sons wife. I just couldnt do it and they wouldnt drop the issue. I cried the whole way driving home. I probably shouldnt have been driving at all but all I have is me now. I stopped at a church and a member followed me home. He came back 30 minutes later with a priest to pray with me. They'll check on me over the next few days. They offered to help with the arrangements and the priest offered to donate his time for the interment. I spent the rest of the day very ill, quiet, and alone with my kitties.
Walt I think she choose a nice color. I hope the project goes smoothly for you.
Michelle I hope things will be easier to manage after the class next month. I do understand being in a rut. Thats probably why I got involved in so many things. on the rougher days i searched cute animal pictures on pinterest or inspirational quotes when I lacked energy.
Im so tired now. I need to rest. I have so much to do tomorrow and so little strength.
Kim, I am SO SORRY for your loss. I am happy that you made it home safely. Though we have never met other than this forum I am typing this with tears in my eyes. It seems as though we have become an extended family by putting our feeling in print with each other. Be safe and you are in my prayers.
I cannot even begin to express how sorry I also am for your loss. Nothing I can write right now is adequate and I just want you to know that you are in my thoughts and prayers also.
I can only agree 100% with everything Walt writes above. From everything you have written I do know one thing; your husband was so very lucky to have you for a wife and by his side and I know he must have felt loved and safe with you. I am crying as I write this and I send you much energy and light. I hope you get some sleep and we are here when you want. Know we are here when we you need your "extended internet" family.
Thank you for your thoughts and prayers. Some of the arrangements are complete. I can only do a little bit at a time before I need to rest. Everything will be very simple. I haven't heard from his children so it will be something special for just the two of us. Yesterday a pen pal called. I only met her one time with my husband last year and once after he got sick but we were active on a forum for 8 years or so. She may drive down on Friday and spend a few hours with me. She has a heart of gold and is so thoughtful. The only other call has been from the church. I was able to keep a little soup down last night. This morning I went to church. I was warmly welcomed by the member that followed me home and brought the priest to me. I'll try and go each week. Today was rough though. Another melt down. It's difficult enough that it's Valentine's day. The Priest reminded us it is world marriage day. Lots of couples. Me alone. There came the tears. I haven't been to church since before I was married. Things have changed alot. I was surprized to see technology such as monitors that would display the verses to the songs and tell you when and what to recite.
It's the first year Pantone has chosen 2 colors of the year. This year the colors of the year are Rose Quartz which symbolizes compassion and composure. The second color is Serenity which brings feelings of respite and relaxation even during turbulent times.The Priest suggested I say the prayer for Divine Mercy. I pray it on my rosary each morning and night. I see these colors everywhere from the image of the Divine mercy, to the start of the sunset where the sky is blue and pink, remembering my husbands blue eyes, and our Azalias blooms. Coincidence? I see it as God's promise fulfilled and he is in Heaven.
I need to rest again. Maybe later I'll go sit by the waterfall. There's a large manmade one at a state park very close by. I need to get myself together for tomorrow. I have to visit some cemetaries to select our final resting place and the van started sounding funny so I need to get that checked out. Work has been great. They are asking what they can do to help but nothing comes to mind other than pray and allow me the time to heal. I'm thinking about trying to return next week. I need to be able to eat, keep it down, and stand on my feet for a 10-12 hour shift so we'll see how it goes.
I hope you all are having a special day with your Valentines. All the hard work being a caregiver is for true love. Enjoy and treasure your time together.
Kim, I am glad that some of the arrangements have already been taken care of. I hope the whole process goes smoothly. It is unbelievable that you haven't heard from his kids. I just don't understand people. They can be extremely hurtful by saying things and they can be just as hurtful by saying nothing.
I don't know if it would be impossible to do or soothing with the memories if you listened to Andrea Boccelli.
Thank you for writing us here on the forum, it was very nice to hear from you and I did not expect you to have time/desire to post anything, but thank you. Thank you for thinking of us. I have not had the desire to write anything lately. I cannot tell you how many times I have been thinking of you and hoping you are coping OK and able to give yourself some rest and reflection. It seems like you are doing that. Your first mail brought everything immediately up and front and shook me more than I imagined such a mail would. I so wanted to do something for you, to help, to be there, to assist you with anything, all I could do was write. And send you prayers and energy.
I am sorry for the lack of response from his family. Maybe if you are at peace with that, it does not matter too much to you or gives some relief of not having to deal with them and being able to concentrate on you and the upcoming arrangements. I also think that the Andrea Boccelli music detail seemed very nice too. Anything that was a source of happiness or a loving memory you both had with each other. I also hope you find a space at the cemetary that you like and feel good about it. I hope your pen pal makes it down to you soon and you have some nice hours together. It is nice to have someone that cares to be with and have a good talk with, and after 8 years you must know each other quite well.
I am happy to read that you find beauty in nature and sunsets and certain things bring a fond memory or reflection. I too get so much out of being outside and seeing things in nature with my eyes, ears and senses. I am able to be in a different here and now, relax, reflect and gather energy. I wish you many beautiful sunsets, sunrises and peace. I am thinking about you these upcoming days and you are in my prayers. We are here.
Walt,
thank you for your note above. I hope you and Leslie are doing fine and things are OK in your neck of the woods. I apologize for not writing so much. I have been thinking of you and hope you are OK. Do you remember when Kathi was supposed to return?
Kim, I pray that you are coping alright with all the arrangements and with the family. Please try to get some rest when you can. The priest and the church sound very helpful.
Michelle, I hope you are doing okay and that the weather hasn't been too severe. We are going through a cold snap with single digit temperatures and wind chills below zero. I don't think it is nearly as cold as Kathi gets in her area. I thought Kathi would be home by now and I pray that everything went smoothly and everyone involved enjoyed themselves.
I've been home for a week tomorrow but sick and hiding out (just a cold). Sometimes denial takes over and I want to pretend that we'll retire in Florida until we're in our nineties, happy and healthy. I'm back to reality now. Sorry.
Kim, I'm so sorry for your loss. I'm glad you were there for him at the end. it sounds like you had a long and happy marriage with him. You can hang on to that. Not everyone gets that gift from life. Don't know what to say. Take care of yourself. I'm glad you found the church. They sound like extraordinarily kind people. I pray you find some peace.
Michelle, I can relate to being in the kind of slump you're talking about. I may be in one now. Soren's suffering really touched me. I didn't realize all that he's been through already. Loss after loss. You've held up so well. When does he begin dialysis? I'm so hoping that will help him feel less sick,
Walt, the color selection process has brought Leslie to life for me. I can relate to her. The colors I live with are terribly important, I also learned to drive the boat so that I can drag people around on skis, tubes, and wake boards. The boat is my sanctuary in the summer. We don't get the dock out until Mother's Day weekend around here but it's only a few months away! Once a year, I host a Ladies Weekend at our lake home. Various old and current friends show up every year. Some of them I would never see otherwise. I'm looking forward to hosting one again this summer. I haven't for the past couple of years because we were renting out the place. There will definitely be boat adventures!
Florida was glorious. Cold-ish (60s) but mostly sunny. We were visiting dear friends and that filled my heart. We did have one beach afternoon which Dennis loved. He had a rough time at the beginning. The first travel day did him in. The security people asked if he was OK to fly and brought people over to have a look at him. He was shocked. I was a little surprised, too I knew he was overly tired and needed to sit down immediately but he didn't look really bad. I know what really bad looks like. Our friends in Florida were kind but I could tell they were also very surprised by the way he looks. I guess I just don't see it. He spent the first couple of days at their house in bed and very sick. But then he got better and we all had a great time. Lesson learned: either pay the double fare (yes, twice as much) to fly out of our home town, or, if we again make the 3 hour drive to the Minneapolis airport, we should do it the night before and stay in a hotel near the airport. The driving and flying was way too much for one day.
All of this disturbed me and put me into my hiding place (emotionally). I had a dream when I was in Florida that I was at work and simply walked upstairs to the boss and said, "I'm retired now." and left the building. Then I went home and fell into a panic and sobbed and tried to take it back. It was a nightmare. All of my fears came tumbling out. And, guess what, they're financial! That's not a trivial matter, for sure, but at least it's just one thing to deal with. I know for certain now that I need to retire asap to be with Dennis at the lake and in Florida full time. I'll be 62 in April so it's possible but it won't be easy for me. I need to start working out a budget so that I'll feel comfortable that we can live on what we'll have. Then I'll be fine ---- maybe.
Kim, I'm so sorry you're suffering. I wish I could be there for you. You've been in my thoughts since we met but especially during this last crisis.
Kim, I'm glad that you don't have to make that long trip to the hospital. I was worried that there were times that you were really tied from all the driving and the situation and that you might fall asleep. I truly was concerned.
Kathi, I'm sorry it was so rough on Dennis the first day of the trip and that it took awhile to bounce back.
Michelle, I wish you didn't have to ride your bike to work in the bad weather.
I am just so happy to see all the dedication that each one of you have put into your marriages. If there were more people in this world like the three of you it would be a much better place to live in. You are in my thoughts and prayers.
Walt the trips to the hospital were rough. Many nights I had to stop halfway through just to shut my eyes for a bit or get out and walk around. Unfortunatly it was the only option I had. I couldn't afford to miss too much time from work. I needed the insurance and the income.
It's not getting any easier. Each day is harder to find the motivation and strength I need to make it through the day. The older daughter called and left a message. I couldn't pick up the phone. She wants me to reach out to them and invited to take me out of town for a couple of days. A message was left from his exbrother in law he "just found out" on Sunday. The youngest daughter texted a happy Valentines wish for me and her father. I haven't heard from her in weeks. I was told by the hospital that the daughter in law would take care of the notifications. I guess not. I asked the youngest daughter to call her sister. Right now I'm sick. Keeping food down is an issue, all sounds/noise are upsetting I had to unplug the phone and put the cell on silence. I feel as if a big block is on my chest making it hard to breathe most of the time occasionally accompianied by pain. Sleep...LOL. I toss and turn and get a couple hours here and there. A Dr will just give me pills. I'm rather health conscious so I tend to avoid meds. He perscribed some at the last visit but they can be addicting. I never took them. I really dont need another problem. I had my heart checked at the beginning and all was fine. It's just anxiety and stress. Quiet on a computer I can "talk" but in person is still a problem. The sounds, the stress, having to pay close attention to listen, deciding how to respond and trying to maintain composure is more than I can do right now.
I did find a cemetary. What a hard decision that was. The first one I had to leave. I got sick. The one I selected is on the way to work so I could visit often. I was wiped out at the end of the day. I am trying to accomplish one thing each day but no matter the task it seems daunting. Any decision is overwhelming including what to wear each day. I spoke with our attorney's assistant today. It seems everything is in order. A number of years ago we set up all of our documents including a revocable living trust. There's no probate or anything to settle. All debts in his name I am not legally obligated to pay although I'll get ugly letters trying to get me to assume the obligation if I don't. All assets are in the trust so there isn't an "estate" that can be gone after by creditors.
I'll have to return to work next week. I'm not sure how. I work in a restaurant. Vomiting is more than frowned upon its a violation of health code. How can I smile and talk to people? The decisions I have to make are endless (Im a supervisor). I don't think FMLA covers grief. One step at a time......
Kim, my heart goes out to you. You're right to take only one step at a time. It sounds like your body is going to enforce that rule for you. Can you try not to think about work? Next week is more than twice as long as you've had so far and maybe you'll be better. If not, then so be it. You just stay home and take care of yourself.
You know, I don't know much about your husband, not even his name. Can you tell us something about him? What was he like? Clearly you loved him a great deal.
Sometimes going back to work is helpful. That said I will say it is not necessarily true for everyone. Some people immerse themselves in work after the loss of a loved one and others don't. If the workers that you supervise understand the situation, most if not all will understand that you are not yourself at this time. If it is the public you are dealing with they will be unaware of what you are going through and sometimes that makes it easier to just put on a smile and get through the hardest of times.
Kim, you sound like you are taking all the right steps and talking to all the right people to guide you along. I hope that a more restful sleep will be with you soon.
There was so much to read and catch up on, and we are riding the highs and lows. Life is so full of these, but I feel that our lives, being caregivers make it all so present and something we have to deal with all the time whether we like it or not. And all of them are necessary to progress and get through, grow, learn and finally appreciate. All my words sound lofty and superficial, also because I am writing what I know to be true, I am just so not there yet, so I am not trying to be a Ms. Smarty-pants here, maybe just writing out loud to myself also. Trying to convince myself also.....
Kim, you are doing such a good job. I cannot even begin to imagine what you are going through and where the strength comes from inside. There are so many things to deal with and just the magnitude of people and tasks must be so overwhelming. Plus taking in the fact that you are probably starting to absorb and take in all that has happened the past years and all leading up to this time in your life and now being you. It is so much to take in and deal with, please remember to take time off and shut the door, close everything out and just be and breathe. Even if it ends up making you cry because the feelings, emotions and amount of it all is overwhelming. I hope you can keep more down soon or find some foods that agree with you more. Food is so important to keep your body running, it needs it so much, especially now. I agree, that try not to think about work even if it seems like a huge thing right now. Take your days one day at a time if possible. I agree with Walt, maybe work will also (albeit difficult) make a space to think of other things, I don't know, we are all different and have different needs. I also think I could have one opinion now and then if I were in your situation I might think totally different than I do now. So maybe I am just blabbing again. I can so resonate with being worn out just being with noise and people and decisions. I hope you get some good quality time in with the kitties on your chest, heartbeat to heartbeat, and be with them and sleep. I wish you better sleep, food that stays in you, energy and taking it one step at a time that will not be so daunting. I am also glad you found a cemetary you liked and was able to find a place that you liked and on the way to/from work. Kim, you are in my thoughts and prayers. I too wondered like Kathi about your husband. If/when you get the time, you can tell us a little more about him, if you feel OK with that.
Walt, how are you doing? How is Leslie doing? What have you been up to the past week? It is funny how we all are connected in a way through this forum. I thought about you the other day and wondered when you would start painting the bathroom and what you guys were having for dinner, if you were making food that night. I thank you for your kind words above, that made me feel very happy. I hope you both are doing well, the kitties are doing good and everything is moving forward in a nice manner. I am still considering about getting one of those Cardio Striders one day, if Soren ever gets some strength back.
Kathi, so glad you are back too! I thought about you alot and wondered how the trip went; seems like there were some things that were really hard (Dennis dealing with a long and hard trip and first day) and will be different next time ( maybe staying at a hotel at the airport the night before etc) but it did you both really good and was worth it and Dennis having a spectacular beach afternoon and being with friends that made you happy. I must say, I like the part about the dream of quitting..... hmmmm..... a sign of things to come soon? Have you given it more thought or had the time to do some number crunching? I look forward to hearing about what you end up deciding on this issue. I hope you are feeling better after coming back from the trip. I understand about "going into hiding" - I do it also. It is necessary for me to pull back and be with whatever is going on within me/around me. It is a very long process and probably something I will have to work on my entire life.
Soren will be operated on to get the fistula in his arm for dialysis on Feb 25, then if no infection, a 4 week healing time. Seems so long, but I think they wait until the last minute before dialysis. I am struggling right now because he is so tired and sick a lot, he has lost so much weight and his energy level so low that he does not even seem like the same husband I married. He has no energy to deal with us, me, our future, thoughts, etc etc. I have to accept this right now, I cannot change it and I cannot force him to be how I want. But sometimes I worry if he will ever be slightly the same man I married.... The blindness has taken a toll of course too, such a big thing to have to deal with.
We are now in the beginning phase of getting a smaller place (downsizing). It might take a while, but we are started and we found a realtor we want to work with. I wish the perfect place would appear in a couple of months so we could get moved before dialysis. Not that Soren can help me move, but it would be one less thing that has to be dealt with.
I have to get back to work.
I wish you all a wonderful day and my best to all of you, take care
I was/am so focused on all the tasks/care that needed to be done that thoughts of stepping back were beyond me. To a certain extent they still are. My husband was everything to me. We were rarely apart and had fun doing even simple chores. I was pretty good at couponing and he always came to the store shopping with me. His job was to drive around and get the coupons in the machines on the shelves while I worked through the shopping list. Often I'd have to check the basket because items would somehow "fall in" when I wasn't looking. He used to say he had to come with me to be the "get away driver" because I was saving so much. We were fairly active. We loved to travel usually to Gatlinburg and the Smokey Mountains. We also spent alot of time at Colonial Williamsburg. Our favorite trips were to scenic or historic places. We did day trips locally to the theme parks, zoos,St Auguatine, museums etc. There's lots to do in Fl and were centrally located. He looked forward to planning our monthly "Fun Calander" when I receive my work schedule. We were always somewhere on my days off. One day a month was to the humane society to play with all the cats and drop off donations I picked up couponing to the pet food bank.
He was thoughtful and always worried about me. He watched to ensure I ate enough, got home on time (I commute), at the slightest sniffle he'd insist I go to the Dr. That took some doing as I rarely go to Drs. In all our years a holiday or special occacion was always celebrated with something or somewhere special. In the hospital if I stepped out to use the rest room he would keep asking the nurses "where's my wife". He loved me and I him.
He was physically active as well. He was a powerlifter and worked out daily up until the last year. He did security work (was stage security for the Rolling Stones on tour), large clubs (Lynard Skinner and band were thrown out). He was a construction supervisor on some of the busiest bridges and well known buildings. His work will live on. He was always able to make me laugh. He was someone that if you met him once you would remember him forever. When he started talking...anywhere...others would begin to come by to join the conversation. He was that much fun to talk with. He had a knack for finding himself in comical situations ie a lady got into our van and sat with him while I was in a store. She was chatting away then noticed me and realized her friends van, the one she thought she was in, was 2 spaces over with her friend doubled over in laughter. I came out of a store in the mall to observe a young 20ish girl dancing in front of him. Yup. In the mall. In her thick accecnt she says "oh you must be zee wife". She worked at one of the push cart stands. People were drawn to him.
He always spoke of me with pride. He wasn't afraid to put his foot down here and there though. He loved our kitties dearly. He had asked me to pick up some food. I didn't remember. They had at least a weeks worth but that was calling it too close for comfort for "the boys". That night we went to a show, Sarah Brightman. We always dress to see her. He hated to get dressed up but did it for me. Comming home he stopped at Walmart and bid me to go get cat food "just in case". So there I was shopping in a full length evening gown in Walmart. I didn't blend. It was sure easy to find someone to help me find that isle though.
I'm just lost right now. I force myself out of the house to get one thing done each day and I return totally exhausted. Wednesday I took the van in to be checked. I sat in the dealership crying for an hour. I did call my pen pal who talked to me until it was ready. Yesterday I went to the Dr. yesterday. He signed the paperwork for me to be on leave until the 15th and wants me to try some pills. I couldn't stop crying. I see him again next week. I don't want to take pills and I really just need to be able to eat, not be so tired, and stop crying to be able to go back to work. I can't imagine a customer wanting to address a concern with a supervisor thats crying. I ended up sleeping in a recliner last night. I put the sheets in the wash and didnt have the energy to make the bed. Hopefully I can get past this stage by the end of next week. I was able to keep down a green juice smoothie yesterday so thats a start. Today I think I'll try and put away all the stuff from the hospital away. Each one sent me home with everything that was in the room as they can't use it for another patient. I still havent unpacked my suitcase. I keep hoping its a mistake, a bad dream and that I just need to load the car and get back to him. I guess that sounds silly. To get out of the house there's a park across the street known for it's Azailias. It has a beautiful spring and a waterfall. I may try and go there today. The suns out and there isn't a cloud in the sky.
So how are you all spending your day today? What hobbies does your spouse have and do you share an interest in them too?
i love this post. My husband and had been trying to find activities we could do together before the accident. He even bought a Honda gold wing for longer trips. So I would be more comfortable. i was toying withe the idea of getting my own. Things change. It is one more thing to grieve. But if we open our minds I'm sure we can come up with activities we can do together. It just takes extra planning. This could help Made'Lisa also because everyone in her family has a different need. Without judgement I would say dad could be helped by antidepressants. Depression often shows its self as grumpiness. My husband and I are both going to get individual and family counseling. One more appointment, I know. But without the disease would the behavior be acceptable? That's the question I ask myself.
I want to thank everyone on this forum for opening up. Whether it is about your feelings for your spouse or the problems you are going through or even about your pets and the things you like to do. Like right now I'm not sure if I'll get through writing this because my large white 22 pound cat decided he wanted to be on the computer desk with me tonight. So if he does change things by touching the screen too much or stepping on the keyboard I'll try to continue.
Kim, when you said that you slept on the recliner because you washed the sheets and didn't have the energ to make the bed I thought about the times when I just laid on the bed (not uncovering it) so I wouldn't have to make it in the morning. Those are the days that you know that you are totally exhusted, both physically and mentally. Luckily I too had cats that gave me comfort and didn't make TOO MANY demands.
Michelle, when you talk about the demands of Soren going blind and the kidney problems, it makes me feel somewhat helpless because I can't come over and help you out. It does make glad that you are willing to put your feelings in writing. I hope you know that all this information about medications and doctors and your feelings helps everyone that reads this forum.
Kathi, you, like Kim and Michelle, are so devoted to your husband that I'm proud to be able to read what you all write and know that the world isn't made up only of the people that you see on the news. The world really is made up of millions of GOOD people that care and work hard everyday. I think this forum shows that everytime I read it.
Leslie and I are doing well. She did pick out the color for the bathroom. Now the only thing holding me up is finding carpet that we want for it. Most of the spakling is done, I bought new baseboard trim and it is cut and painted. I know what new toilet she wants. Please don't get the wrong idea, Leslie and I both make the decisions about color and all, I just like it when she picks it out and feels good about it. So things are going good.
Besides boating, Leslie and I enjoy geocaching. People hide things in the woods (different parks and neat locations) and post the GPS coordinates at geocaching.com. Then you go out and find these hidden "treasures" sign a log book and say you found it in your profile on the site. It has taken Leslie and me too many interesting locations and parks, many that we didn't even know that they existed. Some people uses there smart phones instead of a hand held GPS, but my phone isn't that smart.
Walt 22 pounds is alot of cat to love. Thats great that the two of you share such a fun hobby. I'm glad she found a color she likes.
MichelleI hope the surgery goes smoothly. I can relate when you said you wonder if he'll be the same man you married and how stressful it is when their condition has changed so much. Its quite a bit to handle. Quite honestly I don't know how I did it. I think between caring for him and all the research to learn plus work at that point I just didn't recognize how much had really changed. I knew it but just couldn't process it if that makes sense. It hadn't hit home. Early on in my husbands illness when he was unable to communicate. The Drs, God, and my husbands will brought him back to me for a bit. Even when we didn't think he could hear us I kept talking to him telling him how much I loved him, how proud I was of him and why, shared that things may be different but there is still a future and good times to look forward to. He thanked me for telling him I was proud of him. He was a strong man and to be at the point where he was was difficult for him. It boosted his morale and made him smile. I think you are doing great job balancing everything on your full plate.
Kathi - I hope the numbers work out for you. Working and being a caregiver is rough.
It was another difficult set of days. A social worker from my insurance company called. I was a mess. She said to get out every day around people. I do leave the house for a bit each day. I probably shouldn't have left yesterday. The funeral director brought the death certificates. I don't know if there is anymore of my heart to tear out. It's in shreds. I had to rest for a few hours but then forced myself to the park. Wouldn't you know they had a wedding celebration going on. It just wasn't my day. I got as far away from the sounds as I could. Later that night I walked around a grocery store and then to see what red box had for movies. I blacked out in the grocery store. Not completly I just went cold and then couldn't see. I sat down in the isle until the feeling passed then went outside to sit for a bit. I picked up 2 movies Everest and A Walk to Remember. I guess I just pushed myself too much. Today in church however the same thing. We were standing and we were greeting our neighbor before communion and my arms, legs and face went cold, it was hard to breathe and everything went black. I sat down. I could still hear people asking me if I was ok. It passed but I still felt funny afterwards. I met the church member after the service that calls to check on me and headed over to meet some of the other members. Nice people. I couldn't stay long. I was very tired and still didn't feel well. I felt better after a resting a couple hours at home. I guess I'll be calling the Dr in the morning. On a positive I did talk to a couple of people briefly without crying & kept some food down but boy did my tummy rebel. I was uncomfortable for hours. Hopefully tomorrow will be a better day.
Walt, thank you for your posts and wonderful words, they go a long long way. More than you know. You know how to write the right things in a very nice way. It was also great reading about you and Leslie. And your 22 lb cat. he he I have never heard of that geocaching - sounds so interesting and also a good excuse to get out and see some wonderful places. I also really enjoyed reading about your husband and all that he was and did and how much he meant to you. He sounds like you hit the jackpot on your love and finding each other. He sounded like he treated you as good as you treated him. Loved the making you pick up kitty food "just in case..." and having loads of kitty food... And Kim, so amazing that you could go to the humane society and not leave with at least 20 cats and dogs, I would! So nice to read all your posts and thank you Kim for still sharing and being with us here on the forum even though I can read and understand that your days are still full of struggle and just getting by and I am sure you are still busy to the hilt getting things arranged. I really hope that your blackouts do NOT continue, that is a bit worrying and I really hope nothing like that happens when you are in your car or a place where you can hurt yourself if you fall over. Glad to hear you have kept a little food down, your body is probably in desperate need of it. Please take care of yourself Kim as best as you can of course...
It was so nice to read your posts about your spouses and thank you for your honesty and openness.
My husband has always been my best friend. We have and still can after 18 years talk and talk and talk and never tire of each other. I was first attracted to his intellect and his caring soul. He is a very sweet and kind man and he sees the good in everyone where I can be a bit more wait until I get to know people. He treats everyone with love and respect and is rarely ever in a bad mood. I can always make him laugh and having a big sense of humor is a big plus with me. We both have a major love for travleing and have been to 18 countries together. We have been to many places all around Europe and we also did a coast-to-coast across America trip for 2 months and that was fantastic! We had planned on doing another across America trip soon, but that is not so easy now. I think and plan for us to fly to California next summer to visit my family in Northern California. The dialysis place is a 10 min car drive from their house so it could not be easier. I hope we get this trip off the ground.
We do not have kids and we have a dog, which we have decided to find another family for. It has been heartbreaking having to make this decision. But we live in an apartment complex and the dog has to be walked several times a day and Soren can no longer do this. She is a young dog and deserves a more active life, the one she had when we first got her. Soren got sick and had a bypass (thus the start of this whole timeline) 2 months after we got her. It would have still been possible to keep her if Soren could see. But he admitted to me this weekend that he cannot see enough and is scared of falling down out on the street.She does not get the stimulation and exercise she deserves. She is our baby-dog. We are having to make so many decisions that we do not want to make.
Soren is a film and classical composer. He lives and breathes music. It is a big change for him now that he cannot see. After the dialysis starts hopefully he will get some energy back to get back to work. We both love music and have been to many concerts together, mostly classical concerts together. We love to travel as mentioned and we love to have friends over for dinners and fun evenings full of all sorts of converstations and sometimes board games and good food. I love to cook (not as of the past many months) but often invited friends over for a 5 or 6 course dinner- the works. We both read a lot and have a big movie passion. Which is a good match, him being a film composer and me a film afficionada. We love being in cities exploring and we also both love being in nature and seeing the sights.
I wish you all a good OK to start of the week this Monday, I have to finish up at work so I can get home before the real estate agent comes with papers to sign.
Walt, I could really relate to what you said about there being lots of GOOD and caring people in the world. The news is often too much for Dennis (and me, for that matter). There's not enough reporting about the good stuff - like there's no room for it. Almost all of the people I know are hard-working, good people. Few are as kind and devoted as you three, that's for sure.
Kim, thank you so much for sharing about your husband. You're a very good writer. I feel almost like I knew him. I think it's great the way you planned your time off and made sure you spent time together doing fun and interesting things. There's a lesson in that for me. I'm bowled over that he did security for the Stones and knew Lynyrd Skynyrd (even if it was just to throw them out)! Dennis and I love rock music. Our daughter is a rocker, too. She's a good guitarist and loves to play Skynyrd. She also plays viola in the college orchestra and I play classicial piano (not well) so we love classical music, too. Dennis was a medal-winning disco dancer in his day. He is an amazing dancer still (although break dancing is out these days unless he really wants to break something). I hate disco music but I'll endure it for his sake. He will still get up and dance even though sometimes he doesn't make it all the way through a song. Everyone in my family looks forward to Dennis' dancing at family weddings, etc. It's his thing.
It's funny how men can be so elegant and easy when they're into their thing. I'm sure Soren is a sght to behold when his compositions are coming together. And, Kim, it shounds like your husband came into his own whenever he had an audience. Walt, I picture you fishing or working on something. You'd be very meticulous and exacting, I think, and make the work look easy. Maybe it's because men can focus so thoroughly. That same trait is annoying sometimes, too, as I'm sure you all know.
Michelle, I was sorry to hear that Soren has to wait another month plus before his dialysis can begin. Yikes, it's been a long haul. I'm glad to hear that you're still planning your trip to California. That will give you both something to look forward to.
Dennis and I are planning to retire at our lake home (former shack-on-the-lake) so we spent a lot of the weekend talking out how we'll fix it up and what we'll do up there in the north woods every summer. It make us both very happy just to think about it. We've already replaced the roof, windows and siding. The next move will be to vault the ceiling on the interior and add a loft above the 2 bedrooms so that we can host more guests! You guys are really helping me get into this with enthusiasm instead of fear (about money, about being stuck alone in the woods when he's gone...). He loves the place and the boat so much. I love it, too. If I try to plan for "when he's gone", I am immobilized. So I'm giving that up. I cannot know what that will be like.
Kim, thanks so much for sharing with us. Despite your sorrow and your feelings that you can't go on, I can see your spirit alight in you, searching for what's next. Your strength is an inspiration to me.
As you all talk about you spouses and yourselves it gives me a better understanding who each of you are and how dedicated and loving you all are. Leslie and I don't have a large circle of friends. We have many aquaintances but not many really close friends. I cherish the ones we do have and probably regret the the circle isn't a little bigger. So what happens is that some of the visits are somewhat superficial and some are from the heart. They are all nice but there seems to be a different level of communication. With the friends you can open up your feelings and not be judged. It isn't as deep with aquaintances. I have no idea where I am going with this, but It is what is coming out as I type. I'm not being critical I'm just putting down my feeling.
WaltK, I truly understand your feelings here. I am in the same boat. We have very few friends, if any. And yes the ones that visit are not there because they truly want to be there. Most of them for me are people that are visiting because they want to please or impress some one else. That can really hurt when you think about it. My hubby has one close friend. He is elderly and not in good health. I found that those I thought were my friends, were really not. The more time I had to spend with my hubby, the less time they had for me. The less I could give them, regarding time and talent, the less they had for me. Accepting the truth about relationships can really hurt.
I have been waiting for time to write to you all and check in. I am running and running everyday and can hardly keep up. I have no idea what the heck is going on, but time has not been on my side. I apologize for my absence. I have been thinking of you all and sending you all good thoughts. Next week will be no better, but after that I think I am going to scale back on extra activities. I can feel I need a bit more time to relax when I get home. I have arranged for friends to come over and forget that Soren of course cannot help so I end up cleaning and buying food and arranging etc. I need to be a bit more realistic about time limits etc. I am doing fine enough, I have been crying alot but for me right now it just has to get out of my system, so I do not worry too much about it.
We have had two meetings with the real estate man and now we signed the papers for him to help us find a new apartment and sell our apartment. Next week the photographer will come to take pics. Gotta clean up and make presentable. Then we have a couple more meetings with the Blind Society and then psychologist meetings, that will be that week - oh yeah, then a full time job mixed in there for the heck of it :-).
Soren is in the hospital for his operation tomorrow morning, he stays the night tonight and they scan his arm and keep him under observation til tomorrow. After this, 4-5 weeks, then we are ready for when the doctor says "Time for dialysis". He has lost 16 lbs in 3 weeks, so I am a bit worried, he is so skinny. He loses weight and I gain weight, but of course it is more important that he gain some weight back.
For some reason when I look up at the previous posting it is not Walt's and Kathi's before that, it is from KarenS. Which is fine, but I cannot see what you wrote last (I usually scoll up and down so I can comment). I just remember that I really liked Walt's post and understood exactly what you wrote there. Funny, because I am a foreigner I have no family backbone here, which has been hard. So many of my friends are really close and like family for me. Unfortunately I have no contact with my biological father and biological mother. There are two sides to every story; mine is that I wanted them to be more engaged in my life even though I lived so far away; to keep in contact me and ask about my life. For some reason I kind of just disappeared when I moved to Denmark, it was difficult for them to feel close to me and stay engaged. Which broke my heart and I became very hurt by it. I confronted them about it and it did not end good; I told them I needed a break then because I obviously wanted more than they could give. I have never asked for money or even visits from them here in Copenhagen, just be engaged in their daughter. It was not possible. So I have not talked with them in 10 years, which breaks my heart because I so want a loving family and feel I have a family backbone. Not in this life. So my good friends are my family.
Kim, I have thought about you so many times each day. I hope you are doing OK and getting by, I hope you are eating and being able to sleep and have a bit of time for yourself. Kathi, how are your plans coming along? I get so swept up in your future plans at the lake, sounds like such a good thing and wonderful. I am glad we can help you feel the wonderfulness that this possible decision you might soon make will do for you both.
Take care each one of you, know you all are in my thoughts and prayers even though I am kind of a chicken without a head right now.
Walt I can relate to the small circle of friends. True friends that will be with you through thick and thin are a rare treasure. My husband had a couple close friends years ago but as they moved away they lost touch. The last one is still the second contact for our living will. The closest friend I have is probably my pen pal. She's done more for me that anyone else. She gets it. She has a special needs child and an angel before and after her. When I redo my estate documents I'm considering leaving something for her daughter. I'm glad we got all the documents done way back when but we should have reviewed them sooner. Had we had an irrevocable trust vs a revocable trust I would not have had to worry about scrambling to try and create a qualified income trust to protect or assets from Medicaid. If he would have had to go into a nursing home it would have wiped us out. Medicaid uses a 5 year look back so unless one is very wealthy or has long term care insurance planning is important and can help reduce some of the things to worry about.
Kathi so he's a fine dancer. Something I never learned to do. We took classes but my husband didn't like it when the teacher wanted us to switch partners. He didn't like some of the people in the class so that was the end of classes. I still enjoy music though. He liked Steely Dan. I listen to many different things from the 80's rock bands Van Halen was a favorite I went to the after party after one of shows Fair Warning tour I think. I knew most of the security guards at one of stadiums so they kept me in the pit with them stage side to keep me safe. I missed them when I went to other stadiums. I learned the hard way that tear gas makes your mascara run and a high pressure hose results in a bad hair day. Nowadays I mostly listen to classical, classical crossover, mountain music ie Appalachian. One of you mentioned a Viola. Love that instrument in particular the Viola da Gamba. I'm not as informed as to all the differences but I just love the way it sounds. Unfortunately it's rare for me to come across it being played so it's a real treat when I do. It sounds as if things are well on their way for your new home. That's exciting!
Michelle How is Soren doing so far after the procedure? Not having your family with you was probably hard today. Does he have family and are you close to them at all? Since you are saying you miss your family I hope you are able to find a way to rebuild that relationship if that is what you want. In my case it's a closed door. I'm bigger now and with a few years under my belt I won't have the same issues but when I left as it was a life safety issue. It's been 32 years. I enjoy cooking as well. Food is actually my lively hood but it's much different than what I do at home. I went all out on the holiday's making everything from scratch with tons of leftovers for freezer meals as he usually requested a crown pork roast. Mind you it's just me and him and I'm vegan LOL. When I cooked I'd always have to watch things closely or bits and pieces would go missing. He said it was the cats. Hmmmm. What types of food you enjoy and Soren enjoy preparing?
I doing better with eating. Still not eating enough and still weak. We were expecting some severe weather with turned out to be just rain so I stayed home the last few days. Yesterday I had the AC serviced. It was 6 months over due. He seems to thinks it's on it's last legs. *sigh* and then the commercial starts it you factor in the anticipated soon need repairs, energy efficiency it will cost X but if you'd like a quote you may "save" money by installing a new unit. Ugggg. I did do some work outside. I cleaned the gutters and some weeding before the storm. I decided to build a memory garden. It will probably be several as I have a larger yard. The first one has a bench swing with an arbor a light pole and a beautiful mature azalea bush and 2 tall cedar trees. I'm looking for a vine to grow on the arbor. It had wisteria but that died. I may do confederate jasmine as we love the scent or a variety of clementas and both have a later blooming time than the azaleas. I'm leaning towards plants that will draw butterflies. I'll fill in with more flowers to have something always in bloom, a marker and figurines. Today I went to the berry farm and picked up 3 black berry and 3 blueberry bushes that will be incorporated as well. We loved going berry picking and there are several butterfly gardens we enjoyed visiting. I have another Dr appointment in the morning. I'm having trouble sleeping. I get to sleep and then the nightmares come. I woke up kicking in the middle of the night and scared to death. There's no getting back to sleep after that. I've tried warm soy milk, chamomile tea, reading for a bit, leaving the light on, so far nothing is working. I'm trying to find a solution without pills. I dislike taking medicines. I'm sure the Dr will admonish me for not taking the meds he prescribed last week.
I hope none of you were impacted by the storm and that your day is going well. I'm keeping you all in my prayers.
I'm sorry to hear that for some of you your parents aren't participating in your lives. My sons live 3000 miles away and I probably don't interact as much as I should with them, but for me it is just a case where they moved to California and I stayed in New Jersey. I was always close to my parents and Leslie's parents which made things easier. My boys know that they can call on me at any time if they need something. They also know that I love and miss them.
Michelle, I hope everything went well with the surgery on his arm.
Kim, The memory garden(s) sound wonderful. I'm sure that everything you incorporate in them will indeed be there to bring back good memories.
Kathi, the lake project sounds like a pretty large thing to do. It does sound thrilling. Designing how you want the house to look both inside and outside sounds very satisfying.
Leslie and I went to the Oncologist yesterday (just for a blood test) to make sure she can resume one of her meds and today she went in for a PET Scan to check to see if the bone cancer is spreading or staying the same.
You ladies know that I'm not a person who writes a lot. So I will wish you well and continue to pray for you.
Hi all, my name is Made'Lisa and my husband has ALS. He is kind of a special case for ALS since he was diagnosed at the age of 7 and now he is 33. He has very limited use of his arms and legs so he is wheelchair bound but hasn't lost any other muscle mass. This is a good thing. Almost 8 years ago he moved in with me and my 2 children, my son is an 11yr. old who is autistic and mentally half the age he actually is and a 12 yr. old daughter who is perfectly normal other than being a teen in training :), and he was an outgoing pleasant person. he had plenty of patience for my son, he was loving, and loved being outdoors fishing or camping. Now he refuses to leave the apartment most days and spends all day either sleeping or yelling at my son. Don't get me wrong my son does need the constant repeating but not the yelling or the holding grudges against him, just to clarify. I love my son so I normally try to deal with him all on my own so my husband, Adam doesn't have to. Adam doesn't seem to be able to see any other point of view but his, I knew his point of view would always be more known than others here but not none at all for anyone else. I am not even sure everything i wanted to say is coming out right but I am just frustrated. The four of us in this house makes for an odd life and since he makes no decisions so it all falls to me, i have managed to distance myself from everyone outside our house due to either people not understanding or just tired of the drama that these diseases create. we sleep in the living room because it is a 2 bedroom and the kids need the rooms and since he chose to sleep in a recliner that can stand him up, I gave up my bed and sleep on the couch so there is no husband and wife anything. Most days it feels like I am caring for a friend and not a spouse. I feel stretched too thin, lonely, and taken for granted. What can I do to help that without not being there for my son or adam? Adam gets 3 hours everyday with an aide but I have to use that time to take my son to his appointments and therapy and tutoring.
I wish you all a nice day. My writing will be sporatic these couple of weeks. It has been a bit crazy the past couple of weeks and the next few are totally hectic with so many things to be done, appointments and agreements etc etc. My time is not enough for 24 hours, but that is just the way it is sometimes, it will slow down again in the future. Right now I just have to keep my head above water. I have thought about all of you so many times the past week. I missed not posting anything and reading posts, I wondered what was going on in your lives and how you all are doing.
Walt, I so enjoy your posts, always have and always will. I have been so appreciative about the way you write to us and what you say. I feel so appreciative because you comment on how hard we work and that it does make a difference. I need to hear that sometimes and feel it - from a 3rd party. And you always write it just the right way. Thank you for that. It is funny, we all have met here and we are friends/supporters to each other in a totally different way than the majority of the people are. But we do not know what each other looks like and how the surroundings in each others lives are. I don't know about you all, but I must have a good imagination, because I have these pictures of what you all (and your spouses) look like in my head; but I also know that the chance of that being similar to reality is impossible. I will not go into more detail because it is ridiculous and irrelevant totally but it is funny how my mind does that.Kim: for some reason your husband looked like Gregory Peck (with a liking for rock music) in my mind. Must be the lovingly way you described him and in my head he became the picture of this handsome gentleman I adored since I was young. Everyone else do not resemble any specific actor/actress, but he dig. Anyway, I got off track there, but I am in a whimsical mood today and nothing gets left unturned. Walt, I hope you and Leslie get back positive results on the various tests Leslie took recently. I hope you both are doing good and getting some miles on your Cardio Strider and maybe there has been some good weather to get out in? Let us know how your projects are coming along.
Kim; I have of course thought of you so often. I send you a specific prayer every day to give you strength and energy. How are you doing? What have you been doing lately? Have you been to the church to talk to anyone or have you talked to your pen pal? How are you coping? Are you back at work or when was it you were to start? Maybe it was the 15th of March, but I don't think you had that much time? Have some things been settled for you with the money issues? And importantly; have you started your memory garden? I thought that that was just a beautiful idea/thought and wonderful process for you also. And it will bloom in all it's love, glory and love that you give it. Sounds like a big project, but it also sounds like you know your flowers and shrubs and greenery. I look forward to hearing about what you decide and end up putting in. I hope you are getting more sleep and a better appetite, Kim. Re the family. I did not have an abusive family or something I had to get away from. My family just does not care, which baffles me beyond words. I miss terribly having a mother and a father and family as a unit, I do not miss them and do not wish to establish contact again. But I sorely miss having a family behind me, with me and for me as I would be for them. I look forward to hearing from you how you are doing.
Kathi; how are you and Dennis doing? How is Dennis doing these days? Has he gained weight? I so know abotu the weight thing. Soren lost 15 lbs in 3 weeks and I worry that he does not get enough nourishment. When I come to our postings I always look to see if there is anything from you and how your plans and retirement dreams and the looming wonderfulness of the Lake House (got pictures of that in my head too - trees and all! :-) ) Are you and Dennis still having good long talks about your dreams and wishes and what to do future-wise?
Made'Lisa: welcome to the forum. Will you please correct me if I have spelled your name incorrectly? I could feel your isolation and frustration. Most likely because I (as probably along with all the others) we have been there / are there/ have experienced many things similar. The four of us that have been writing the past many posts here have different stories/backgrounds and spouses with different issues, but we are in the same boat regarding being a caregiver and dealing with all the difficulties on many levels that this brings along with it. I do not even have children and it must be a whole other extra dimension to be taken into consideration at all times. I can imagine that you have literally no time for yourself. This is one of the main issues (for lack of a better word right now, my mind is blank) is how to cope yourself. We have written about this alot on previous postings (if you go back to read) and it is very hard. We help each other here also by listening and sharing. I was so stretched thin and over-emotional with the burden this is that I was so sad and desperate. Just writing and coming here has helped me personally so much and I am so grateful. I do not know if the burden becomes less per say. But I have a better mind set and having people "in the same boat / understanding" helps so much. I get so much inspiration from Walt, Kathi and Kim and this makes I can deal better with my situation. I hope we can listen to you too and you feel heard and maybe get some ideas from the others. It is very important to every once in a while give yourself a small break where you are alone so you can get your mind rested for a bit and gather your thoughts and emotions. I am quite sure you are on GO all the time and have no time; your mind and body are not used to rest or quiet. It sounds like a very hard situation, also living in a small place and not sharing a bed. Are you OK with him not making any decisions? Is there a way to get him out of the house or is that not possible? Can you get some help with your son, do you know where to look to see if there any resouces to help you? I look forward to seeing what the others write, many times people here have great insight into things or ideas and inspiration.
This became quite a long posting. I am getting by, it is hard but I am moving forward. We have signed the papers for the apartment to be sold in the future and the photographer will come on Thursday to take pics so it can come online. Soren's fistula operation went good this past Friday. So far no problems there. He is very thin and is sick several times a day. We have to give up our beloved dog on the 18th of March (latest if we don't find another family to take her) at the local dog pound, which breaks my heart. They have a no-kill policy and have promised to help with a suitable home. Soren cannot see enough to walk her nearly anymore, She deserves better than what we can give. Other than that just lots of appointments, and the Blind Society will visit again on Thursday to talk things over in more detail - the fist visit was the initial visit. Life just goes on.
I wish you all a good day. You are all in my thoughts
Wow, so much happens when I get too busy for a few days. As always, your posts made my day.
Walt, I'm thinking about you and Leslie all the time since the PET scan. Waiting for results, even results that are expected to be good, must weigh you both down. I hope everything is fine and that she continues to improve.
Made'Lisa, so glad you've stopped by. Wow, you have a double burden with the caretaking of both your husband and your son. I hope we can be of some help to you. I have an autistic nephew I'm close to. He does not react well to yelling. I understand why you're concerned. You are going through a lot. It seems like your husband's personality has changed recently. Is this related to his illness? I do so wish we could fix this for you. You seem overwhelmed, and who wouldn't be in your situation? I think if you stick with this group, you'll find some relief. I hope so.
Kim, the memory garden plans made me tear up. What a great idea. And you're out of the house already - doing something creative. That's really good. Not sure I could do as well so soon after. Sometimes I wish we could exchange pictures on this forum because I'd love to see your garden(s) develop. On the other hand, I liked what Michelle said about using our imaginations. In my mind, your garden is beautiful and it smells delicious. Butterflies peep out now and then as you sit in it.
Michelle, you need a rest. My goodness you're busy! So glad that Soren's surgery went well. 4 to 5 weeks seems like a really long time to wait. He clearly NEEDS dialysis. I had no idea that the process took that long. Dennis' nephrologist has had him lifting hand weights for about a year now in preparation for a possible fistula. Evidently that's supposed to help. Sounds like Soren didn't have time for that.
Hearing about your less-than-ideal families makes me sad for you. I have been blessed with a large and very close family who are all within 60 miles of here. While they don't always "get it" and they occasionally say stupid things about Dennis' illness, we love them dearly and I feel like I couldn't even survive without them. But I agree with what you all say about close friends as well. I can tell them things that I can't tell my family. They don't judge and they don't repeat what they hear. Unfortunately, Dennis did not have such a close family. His parents are gone and he has little contact with his siblings (that's a good thing). My family adopted him many years ago. He's very close to my mother and to a couple of my brothers-in-law and to my brother. Thank God for them all.
Dennis is OK. He's lost a few pounds but we fully expect him to regain the weight. In other words, this last round of sickness seems routine and not the kind that will lay him flat for months. We are still making plans for the lake home. It's fun! I have to remind myself every day not to panic over money. I've been saving all my life for this. I don't know why it's so hard to let go.
My beloved niece and her husband and baby have been living in our lake home all winter. He lost his job last fall and they really needed a place to live - for the winter, they said. Well, he still doesn't have a job and they show no signs of moving out this spring as we expected. Personally, I don't think he wants a job. My niece works her tail off but doesn't make enough money to cover day care and a house (yes, the baby's in day care even though daddy doesn't have a job). That will put a damper on our plans for sure. We're debating how we feel about this situation and what we might do about it. We were so hoping to have a great summer there. The lake does amazing things for Dennis and we all love the family time it brings us. Also, we'd hoped to have the contractor do the vaulted ceiling and loft this spring but we can't very well do that while baby Celia is still in the house. Sigh. This is a tough one. Family has its down side too, I guess.
I hope you all have a great rest of the week. Talk to you soon!
Miss hale, you got my name correct and I will definitely go back and read the posts. No I am not ok with him not making any decisions but it ends in a fight if he is forced to so I just do it. He is able to go outside he just won't. I am in the process of getting my soon a few hours with Ann aide in the evenings so I can have a little breathing room but it is a slow process.
Kathi, bub doesn't react well to the yelling at all it just makes him more defiant.as far as Adam's personality its like in the beginning there was a few small but drastic changes and then over the last 7 years it has just gotten worse.if anything is difficult or unpleasant he just hours to sleep almost like that's his drug of choice. This is on my phone so bare with me but I want to tell about what happened this morning. Bub has so many problems but the most prominent one is that even though he is 11 mentally they say he is at best 4. So many of the naturally normal things a child of 4 goes through he had been stuck on and hasn't moved past. The biggest one is"just because you want something doesn't mean you should get it" he has never gotten this so he steals a lot! It is difficult to deal with and not get mad but as a parent it is just a Necessity, that being said what happened was bub got up early and stole 7 Mt.dews. Adam got mad and woke me up yelling at him. The only thing I can count on husband to do is get my kids up for school in the morning and I am not going to take it over too and not expect any help from him which is what he is wanting but how many mornings like this can I really expect my son to endure before enough is enough? So I woke up grounded my son and got him ready for school and then went back to bed, but the entire time Adam was saying under his breath how he was done with my son and wants nothing more to do with my son. Yes bub broke the rules but no parent step or natural should ever call a child names or cuss them out! I was already upset but now I'm just mad. He seems to not have any compassion left. I am losing the man I love long before his disease takes him from me. And id all of that wasn't enough I am also trying to help my brother with his delusions because my mother wanna nothing to do with it but give him money. I am spent! It is so hard to try to be everything that everyone needs when I am forgotten in the background. I am having trouble sleeping and my shoulder is hurting all the time, I don't know what to do.
Welcome to the forum Made'Lisa. We all hope that we can be supportive and helpful in answeringquestions that you have or at least make a suggestion that would point you in the right direction. Although none of us are personally familiar with your situation with both Adam and Bub we do understand many of the care giver problems and know the range of feelings you go through. Whether it is frustration with the spouse and son or sometimes with the doctors and the care the "patients" are getting. I think we all have had anger aimed in many directions. A quick simple example. I was doing the laundry and Leslie wanted to wash a blanket that the cats lay on, well there wasn't enough room in the washer for it. I told her I would do it in another load. She was upset with me and told me it was a big washer and it should fit. I didn't say anything but I got mad. After a minute as was back to normal but I just couldn't understand why she acted that way. Well I think I figured it out. We have to see the Oncologist tomorrow because he called and said her bone cancer has spread "a little" and I know I really scared to hear what he has to say and I'm sure it REALLY has Leslie on edge. As a care giver like a parent you have to pick your fights. If your spouse isn't following doctors orders, well, that is definitely something you have to put your foot down about and if your spouse isn't treating your children properly that is another issue that has to be discussed and resolved. I hope some of this makes sense. Again welcome aboard.
Kathi the situation with the lake house has to be totally frustrating. It sounds like the husband isn't very responsible and maybe some stronger steps have to be taken. I personally would be considered a "softy" and maybe go too far to help people but there is a fine line from being helpful (which is where I see you) and being an enabler. I would start talking to your niece and her parents about the situation. I hope I haven't overstepped any bounds with this. You and Dennis are always in my thoughts.
Michelle it breaks my heart that you have to get find another home for the dog. I'm glad the fistula operation went well and I'll be praying that Soren can put the weight back on. Good luck with the apartment hunt.
Kim I too picture your memory gardens. Each time it is different, like one time there will be a simple stone bench that enhances everything around it. Another time it will be a wood bench with special carvings that depict happy moments in your life. I do hope things have settled down a bit and you are more at ease taking on this stage of your life.
I appreciate your comments about my niece and her family. Dennis and I talked this over last night and we agree that we are enabling him. We've decided to meet with them face-to-face soon and let them know that we need the place back by June 1st (or May 1st, we haven't decided). That gives them 3 months to find another place to live and to know that we're serious. I do not wish to involve my sister (niece's mother) since we're all adults and that would just be manipulative. I'll explain that I may retire as soon as Sept. and we need the place to be ready to live in. Simple to say but it will be hard to do when I'm looking into that baby's eyes. Oh, what a tangled web we weave...
Kathi, I understand how difficult it is to dish out tough love. I'm sure the baby melts your heart. Good luck.
Leslie update,we went to the Oncologists this morning and the bone cancer has grown "a little" bit. It has involved one lymph node. The doctor changed both of the oral meds that Leslie takes daily and will restart a monthly injection that was put on hold because of her heart surgery. We were definitely worried when we went into the office and after the explaination we felt MUCH BETTER. So everything is good unless the new meds cause some bad side effects. I quess we will find out in the next month or so.
Walt, I've been very worried about Leslie's test results, too. I'm glad to hear that you're not as worried as you were before seeing the doctor. I hope the new medications will not be too hard on her. You are both walking on such a sharp edge. I don't know how you do it.
Dennis was crabbing at me when I got home on Friday. I soon found out if was because I had hockey tickets and he was too sick to go and couldn't convince Emily to go in his place. I guess he thought I'd be upset but I wasn't, of course. I understand. It's funny that he still does that after all these years of sickness. I can tell by looking at him how he feels. He can't hide it from me.
I'm missing you, Michelle, Kim, and Made'Lisa. Whare are you?
Like Kathi says, you can recognize how your spouse is doing even if it isn't done verbably. The way they hold their head or the slightly different tone in their voice are ways we know how they feel. The lack of concentration is a big give away. Over the years I've learned to look for all the different signs that would indicate how Leslie is truly feeling. Sometimes they say one thing but you can tell that isn't exactly how they feel. I guess knowing and loving your spouse is a very good gift to a care giver.
Yes, this is Michelle again, I hope everyone remembers me :-).
Kathi: I got happy when I read your words "I may be retiring soon....." I can tell a lot of thought has been going into your future plans and you are voicing your possibilities and even planning on projects with the lake house. Love it! I always look forward to what you have going on and when the final decision will be made about what you want and incorporating this into your life, plans and dreams. I am sorry that you have to be the person who dishes out the "tough love" as Walt also puts it on your neice. I am sure that is not easy for you with the baby involved. Maybe this will force your neice's hubby to start thinking about his family now that there is a deadline and maybe get a job to support them also. If you had the conversation already I hope it went smoothly and if it is still in the future, lots of energy to make it a positive and supportive conversation. It is your house, I can understand how you want to get the projects done and ready for you and Dennis. I hope Dennis is doing good and I nodded in acknowledgement about the hockey tickets and the underlying issue.
Walt: I read your (and Kathi's posts) and so wanted to write, but time is so elusive for me and I didn't want to just send a quick note that seemed superficial or nonchalant. I was very happy to hear you and Leslie both being fine with the Oncologist's meeting and that was a relief to read. I hope the meds are easy on her and I hope she is feeling and doing good. Please keep us posted. Am I understanding the situation right that she has been good and stable for quite a while now? How are you doing Walt? Is everything OK with you? Do you get out on your own sometimes? Do you need that? What is the status on your projects also and of course, are the kitties doing good?
I am in the midst of several weeks with so many things to do everyday, I really hope it lightens up a bit next week. I can feel that I am starting to have a struggle managing it all; I am sleeping bad and wake up with a headache because I clinch my teeth in my sleep. I sleep fitfully and I really hope this passes. I am starting to feel the pressures of having a cronically ill and blind husband. The blindness kind of knocks it all out of the park and not in a good way. I forget constantly that I cannot leave anything (task-wise) for him to do; be it laundry, booking appointments, new time, booking them to pick him up and deliver him, telephone calls, setting the table for company, cleaning, anything. I cannot believe how much we all take sight, mobility and doing anything for granted. You have no idea how big it is until it is not there. I had no idea, but it is my daily life now. Everything is on me, and I mean everything. I am not very good at stopping up, I keep going and going and going. I have to get better at this soon. And yes, you both were right; this selling the apartment is a huge project already and I am alone with it, the realtor, the pics, the cleaning, the documents (just finding them!), everything. WOW! The dog issue is just terrible. Just knowing that next Friday is her last day with us breaks my heart. We love that dog so much. I feel like I am failing her, we are her third family and it took so long to gain her trust and she is such a good dog. I cry every night in bed over this, literally bawl. It physically hurts my chest to think about this in detail. I do not know how I am going to get through the day. Oh boy, never dreamt this could happen. I feel like I have to make all the decisions also because Søren is ill and does not have the energy or desire or interest to do anything. So to make a very long story short, I am feeling the pressure. Plus being so booked with tasks that cannot wait is making me feel a little older than my real age. I worry to much about our financial situation, but I am doing what I can because now we are moving, that should help in the future when we get moved. I always dreamt of growing old with my husband and travelling and being financially secure and ok, now I do not have any idea what the future holds for me/us/anything.
Ugh, the sun is shining here in Copenhagen, it is almost the end of my work day and cool and clear outside. In a couple of hours I will get on my bike and get some fresh air and bike home.
I wish you all a good day and my thoughts are with you.
Michelle I haven't written in a couple of days because everytime I read your post my eyes fill with tears and I can't type. You are so overwhelmed with so many different things all at once. Selling the house is a major task by itself and can bring anyone to their knees with no other problems going on. Soren's condition would stop most people in their tracks but you have provided for him and guided him all this time and I know you will continue. The dog issue seems to be the biggest imediate heart breaking situation. The majority of cats that Leslie and I have had over the years have just showed up at the door looking for something to eat. These were not ferel cats, but cats that had a home at one time and we can only summise that people have let them out in the woods near our home. There are at least three other ones roaming the neighborhood at this time that some of the people on the street tend to. It is so difficult to give up an animal of any kind, but you are doing what is right for the dog by giving to the organization that can find him another nice, kind and friendly home. This seemed to make sense when I started writing and I guess what I am trying to say is that you are doing the BEST thing for the dog even if it so difficult for you. I applaud you for being so selfless.
Aw, Michelle, it's so sad that you're giving up your dog. Walt's right. You're doing the loving thing for the dog. I'm sure he knows he's loved. I wish I could make you slow down or do some of the many tasks for you. You're doing too much. I worry about finanaces all the time, too. We have moved (downsized) twice so far and will do so again when I retire. I can say that every move was a good one, financially, and that any house with us in it together is a good house. A little financial breathing room goes a long way.
Good news on the lake home! My niece's husband got a job! A good job with benefits and everything. Dennis and I drove the 90 miles to the lake home this weekend to meet with the contractor who is anxious to begin the interior work. So we've had the talk with my niece and nephew. They will be out by May 1st. I don't feel the guilt I evpected to feel since he is now gainfully employed! Someone is watching over them.
I have not seen the lake home since the work began last fall. It has all new siding, roof, and windows with an additional 2 windows and a sliding glass door on the lake side (in the kitchen) that were not there before. It's beautiful. So much brighter - and it doesn't look like the shack that it is any longer! I'm excited about it, despite the cost. On the interior, the contractor will be vaulting the ceilings and adding a sleeping loft over the 2 bedrooms (with a nice dormer overlooking the lake). Dennis and I will redo the kitchen ourselves. We've done several kitchens in the past and there's not the usual urgency since we don't yet live there. It's hard to describe how this makes me feel. Dennis was really excited to see the place and he looks so calm and happy there. Once the ice is out (lake is still frozen), he'll be out in the boat on every good day he has. Melts my heart.
I NEED HELP. IM 33, FULL TIME CAREGIVER FOR MY FIANCE
Hi,
I'm glad i found this forum. Our life was very good, we just got engaged and got our new place, until 3 days before Christmas in 2013 when he got hit by a car and our life went to hell forever. He almost died. His injury was brutal. The doctor asked me to remove life support, obviously I said no. Although he has progress a lot ( he can eat and talk, he doesnt have tubes or anything anymore), he was in therapy and then he was discharge to a nursing home. Worst place in the world. I fight so hard for him and took him home with me. That was 15 months ago. I been his sole caregiver since then, although before I was always on charge of the paperwork, etc. His family sucks. His mother doesnt help at all , she is like another child so I dont like to have her around, his sister lives in France and she barely contact us. His half brothers didnt even visit him. We live in Canada, I moved here by myself 6 years ago looking for a better future, and right now I'm stuck in a shitty situation, because I dont even get benefits from the government but I have to figure out every month how to cover all the expenses, food, etc ( he gets a little help from the government but obviously its not enough). I have 2 careers and I'm still work from home, but its getting harder and harder to keep motivated, and sadly I'm very angry with him and I been drinking this last couple months, still I do what I have to do, I take him to therapy ( well im his physical therapist anyways), I cook, clean, do all his bathing and bathroom stuff, paperwork, doctors, lawyers, like EVERYTHING. He is a sweatheart and we have a lot of affection, but I'm young and i miss having passion, a regular sex life, getting flowers and all that stuff, he was so perfect and I cannot leave him, but the situation is getting harder and harder and the truth I'm not being as good anymore cause I'm like one step closer to burnout. I know people recommend therapy and all that, I tried some but was such a waste of time, basically me bitching to a lady that obviously could care less about my problems and even to do that I HAVE TO plan everything, who will come to watch him while I go, etc, besides its not free. At some point even consider having a open relationship and talk with him, he agreed but reality is that I dont even think I can do it. I feel like im stuck in my memories. During the day I'm fine but in the nightime I just wanna sit and have a drink, and cry thinking about how good was my life 2 years ago. This is not a healthy way to live life and I know, but I cannot let him go and die slowly in a dirty nursing home, but on th other hand im so frustrated.
Thanks for reading, I usually dont vent ( I ride my bicycle, that helps me a lot), but sadly before the accident, I have my own issues that got better when i was with him, but lately my eating disorders are back and also my drinking. Its so hard to deal with everything all by myself, and right now on top of everything I have to fix my visa paperwork, its just like the problems never seen to end.
Sometimes I wish this was a nightmare and I can wake up and everything will be fine again.
Welcome to the forum. I hope you find some comfort here.
You are so young to have this happen to you. It makes me cry. Clearly you love your husband/fiance very much but I can understand that this wasn't the life you two dreamed of. My life was similarly turned upside down but we were not so young and not so early in the relationship. It may be difficult to see now, but there are great rewards in staying with the one you love, whatever his or her condition. You must know that since you made that choice once already. You're facing some unbelievable challenges - yours and his. I don't know but I don't think you can go on like this.
Is there care available for him during the day? Could you get nursing help (not nursing home)? Then you could get a job or do something that fulfills some of your needs. See friends once in a while. I don't know Canada's health care system but it seems like there should be some home care possible. You need a break.
Of course you know that drinking doesn't help. You'll have to deal with that and your eating disorder. I was married to an alcoholic in a past life and spent a lot of time in Al-Anon. It was extremely helpful and brought some gratitude back into my life. I know that AA helps people in much the same way. And they DO NOT JUDGE! No noe knows where you've been but you.
I believe that if you learn to take care of yourself, you'll find joy in your life again and be much more able to help your husband/fiance. My heart goes out to you. Here's a big electronic hug!
Hello all. I have been reading the post and they touch my heart deeply. I have been a caregiver to my husband of 46+ years for the last 19 years. It started when my hubby had a massive stroke 19 years ago. It has gotten much worst since 2006 and now he is bedridden. I feed, bath, cloth, medicate and diaper change daily. My hubby has been on hospice twice and is now off because they claim he is stable. I have no help. We have no family in our state and very little support from anyone else. The feeling of isolation is overwhelming somedays. The need to cry and just sit in a corner some place and get it all out takes over. I have had people to tell me that the day is too pretty for me to cry. They have not walked in our shoes so far. Getting out and just doing nothing is almost unheard of. I sit and starr at the four walls mostly in my kitchen while trying to watch tv. The feeling of isolation is one of the hardest areas to get thru as a caregiver. People will ask me if they can pick up stuff from the store for me but never think to ask to sit with my hubby so I can go to the store for myself. Some days I look at my hubby and I have to ask God to please help me not to hate him. My life has been taken over by his need for care. I have to remember that he courld be feeling an overwhelming sense of helplessness. So much has been taken away from him. He use to be a very active man even after the initial stroke. He would help others and could barely walk himself. But now with one leg amputated and most of his muscle mass gone, it's a completely different store. He chokes very often when eating. He has been tested and the test come back negative for any swallowing problems. I often walk away from him when this is happening because it is hard to see. He is all I have and he depends on me so much but it also strips so much away.
Had some problem logging on, but it is straightened out now. Let me say welcome to our new forum members Caregiver33 and zakiya1 we hope that we can be of some help to you along the tough road of being a caregiver. Please don't hesitate rant or vent as you write here.
Kathi that is such great news about the lake house. It is amazing how SOME things work out for the best. I'm sure you and Dennis will spend many wonderful times there. Good luck with the kitchen. We almost completely redesigned ours by closing off a window and a door to add much more cabinet space and counter space.
Caregiver33 it is so difficult to become a caregiver at a young age. You covered a lot of things that change in your life when you have devote so much time and energy into doing all those things required of you now that you are a caregiver. Every aspect of your life changes in some way. Unexpected things that come up at a moments notice. Today I had to take Leslie to the Oncologists because she developed a sore in her mouth because of new medication. I'm retired so working wasn't a concerned, I just had to stop what I was in the middle of and take her. This was nothing major but it just one of those (many) little things that keep you so busy and concerned. They told what medication to use on her mouth and we were on our way. The big things that you mention from all the personal care to doctor visits and the everyday paperwork all mount up into a huge pile. The lack of family support is anther vital issue when you can get a short break just to relax for a few minutes or do something for yourself. Like Kathi said, the alcohol will present many more problems than it will solve. My prayers are with you.
Zakiya1 I am sorry for your situation and wish that you had family or friends that could lend a hand. It seems to me that everyone on this forum is in the boat when it comes to family and friends helping out. I think that might be one reason we all looked for a forum that had people in like circumstances. There are so many parallels even though each medical problem is different.
I have never opened up to "strangers" as I do on this forum and I now feel that we are friends that will listen and give direction or if we have gone through a similar situation offer advice to help you along the way.
So now we have a couple of bicycle riders and a couple of boaters on the forum. For me this is a long entry, so I'll say bye for now. Please be safe.
Walt, I'm so glad to hear from you again! I hope Leslie's mouth sores improve quickly and that's the worst of the side effects.
zakiya1, 19 years! That's a record on this forum, I think. And you're still very young. Your devotion to your husband is something else. You sound overwhelmed. You also sound lonely and isolated. We all feel that way sometimes - often, maybe. I'm sorry you're suffering. I hope you find some comfort here. Is your husband still able to communicate with you?
I really don't have much news. The kids will be out of the lake home on May 1st so the contractor will start then and we'll have some lake time before Emily (our daughter) and I go to Europe in June. Meanwhile we have her graduation from college! So proud of her. She'll have a BS in Linguistics with a minor in Math. Not sure what one does with that but she'll figure it out. We will all be very busy once Spring arrives and we're all looking at major life changes. It should be interesting.
Michelle, are you still planning the trip to California? When does dialysis begin?
Yes, it's been a total of 19 years since all of this stuff began. He has been totally disabled for the last 6 years. Yes, I am tired, isolated and lonel, but God gets me thru it each and every day. I have my house up for sale and hope to make a transition to Florida. Our children and grands are in Florida. I'm hoping I'm making the right decision to move. It takes so much time to organize every thing especially when you are trying to do it alone. But God. Yes, my husband communicate a little. It is very hard to understand him most of the time but he tries very hard.
I hope all is doing better. May God bless each and every one as you go thru your different struggles, challenges and all that brings you joy.
What a lonely day this day was. Trying to find joy in something. Feeling like crying most of the day. Need to get it out tonight. Spent most of the day when free looking thru Macy's website. Looking at the same pages over and over and knowing full well I was not purchasing anything. I guess I was hoping that the pages would change. Thinking, it's Palm Sunday and Easter is next Sunday. Families will be having dinner and gathering together. What will I do. The same thing I have been doing for many years now; changing diapers, feeding and giving medication. Very little else. Tears running down my face as I write these words. Not a happy day. I know this moment will pass but for now it is very real and the pain of my situation is very real. I will let my tears flow until it lifts and things don't look so bad. This is a good place to vent and share. I know that there are many in my same situation and some may even be in a worst situation.
zakiya1 I'm sorry you are having such a blue day. Do you have anything (hobbies) that you use to take your mind off of your situation. Some on here listen to music to bring some joy into their life. Others use their mind to design gardens and then follow up by doing that task. Others might draw or paint to pass some of the time. I personally do mechanical things working on cars and boats. There are many times I just watch Leslie to see if she shows any signs of discomfort and if she does try to gently urge her into a better position or do some thing to busy her mind. You have an extremely intense caregiver position with all the constant care you are required to give. I'm glad you found this forum so you can express your feelings. This helps us all to understand someone else's situation.
Kathi I'm glad the lake house problem is working out.
Leslie's mouth sore is healing and I've been spending a lot of time at a neighbors house helping him get ready for a move this coming weekend down to Port Charlotte Florida.
Hello Friends (I can see two new friends have logged on - welcome Zakiya1 and Caregiver33),
One of the many wonderful things about this forum is that people in the same cargiving situation can come here, be open, vent, cry, share, get inspiration and also of great importance realize that there are others out there that understand and have had similar experiences. This forum is a wonderful "lifeline" for me and I am so grateful for those who are here, have been here and for the new that come. Lukily also is that we have our ups and downs at different times and when we are down there will be others who having a more stable situation at that time and can offer the energy, understanding and empathy that we need and we can do the same at another time.
Hello Caregiver33 - reading both you and Zakiya1's post really hit home, I could literally feel your pain and despair. I honestly think that being a caregiver is one of the most difficult life situations we can experience. I am sorry for the pain and the immense burden you are subjected to. Family or for many the lack of, is for many here, a big disappointment. I am in a similar situation. It is also hard to ask for help and support from those who should be closest, you think you could expect it or that it would be there more than it is, but that is often not the case. I am getting much better at accepting that this is the way it is and work around it and get better at asking others from help. I have a very very very long way to go, but I am getting better. I understand your anger, resentment, helplessness, despair, the wish that everyhing would be back to normal, the loss of intimacy and remembering how things were and how it would be so nice to have that again. It is such a long process and it has just as much to do with you as it does your relationship to your husband.
I am going to say this and sound like I am putting my nose in where it does not belong - but please don't drink. You deserve better and it does not help or serve you. It is not a viable solution to anything. Nothing else is treating you well in this situation, you letting yourself drink though is you making a decision not to treat yourself how you should be treated. You need to be strong (and by this I mean healthy and in your right mind) for first of all YOU and then your husband. Sorry if I sound like a nagging mom, but I have never ever heard of this ever helping in any situation. I do understand your eating too much, I do that too, and I have to work on that big time. I comfort eat. It makes me feel full and strong and that is not good, I eat too much. Thankfully I am active and in good health, but I do weigh way too much, so I understand that situation.
I cry many nights, and I mean many. It is like this is the time where I can finally slow down and relax and then the whole weight of everything is too much and I have to let it out. I am so tired of it, I wish it would stop, but I also realize that I have to let it out and not keep it pent up, I do believe that it is unhealthy to let things go inward.
I think we all know how important breaks are for all of us and how we have to figure out, albeit difficult, how to work it out, as impossible as it seems. People would tell me all the time how I needed to take a break and I would get so angry inside because I did not know how to make that happen. It seemed impossible. You have to spend that extra time (that you do not have, I know), how to figure it out and start. I am so not there yet and I have been going on several years now, But I have figured out how to do it every once in a while and it makes a big difference. I hope you can find a way. Do not get discouraged that it takes a long time, I am only about 10% of the way, but I know know that at some point my efforts will work out.
Zakiya1: A lot of what I wrote was also to you above. I also wanted to mention that I do not think anyone here on this forum would not disagree with how big the subject of ISOLATION is, or the feeling of it. I think it is also so big because we never imagined how big it is and the form it takes, including ourselves. It is also something that we cannot even really explain to our closest friends or family. You have to have experienced it before you can fully express it or understand it. I have good friends around me, and I talk very open and freely about it, but I can clearly see (and hear by their comments, ideas and suggestions) that they cannot really grasp it. They will say things that they do not mean in the way I perceive them, but it shows that they do not really get the situation. And I cannot blame them, would I in the same situation without having experienced this? But it is hard and the isolation is daunting. I also think some people do want to help and do not know how to vocalize this or ask to help. It is also hard (at least for me it is) to ask for help. I wish I was better. I try to learn to vocalize how it would help. So they can stay with Soren (my husband) for a while so I can get out to do tasks and breathe. Have you thought about vocalizing what you need (if this is a possibility) so you can explain how it would be so you can get out? Then at least they can say no (or yes) if they do not feel comfortable about it, but at least both sides have the opportunity to say something. You might get a surprise every once in a while and whatever helps you is good.
One thing is for sure, welcome here and feel free to be open with us. Walt and Kathi are wonderful and I look forward to hearing what is going on with them every time. They give me inspiration and ideas and support, I am so happy and grateful for this.
Walt and Kathi, I have thought so much about you both and Leslie and Dennis too. I hope you all had a nice weekend and things are still going in a good and forward manner. Walt and Kathi, thank you so much for your kind and encouraging words. Is Leslie doing good now and the sores gone? Has the lake become unfrozen so Dennis can get out on the lake and be happy? So happy to hear that the house is back in your hands by May and that it is such great shape and it looks good with a lot done. Congrats on the neice's husband getting a job and also even more with Emily's upcoming graduation! Proud Mom and Dad, huh?
Bailey the dog ended up going directly to a wonderful family in a small town with another dog and is so happy in her new digs. It was a horrible week but the way things ended up are fantastic. This family heard about our situation and contacted us, they have been looking for a smaller dog (than their Golden Retreiver) who could be a companion for their dog. They met, and it was buddy-love at first sight, The dogs frolicked and played and ran around, they are now instant best friends. It was so sad, but we know she is in the best place and getting more than we could give her. The lady goes to dog training 3 times a week and an avid dog trainer, so it could not be better. So our apartment is quieter now, but we are happy with the decision. Takes a huge weight off my shoulders and conscience. So, now on to bigger tasks, finding a new place to live and getting things in order.
I am doing fine enough, not as sad as the past couple of weeks. Blind School next week and that will be interesting.
I am at work and I ended up writing more that I expected, but I have not been here for a bit. I send my hellos, hugs and wishes for a good week for all. Take care and please excuse all the typos, I do not have time to go through this, have to get started on Monday's tasks.
I am always saddened when I read the problems everyone is going through and I am always gladdened something good happens, like going to a hockey game or graduation, but I sat here with tears (of joy) rolling down my cheeks when I read about Bailey going directly to a good home.
Me, too! Goosebumps and tears about your dog. Animals are so precious to us. I'm so glad she found a happy home with a friendly sibling dog. Thinkgs just couldn't be better for her. I'm so glad.
I guess we've been busy. No posts for some time now.
Zakiya1, I've been thinking about you lately. Your loneliness is palpable. I remember what it was like when I was younger and slowly realized that my life was not turning out at all the way I expected. It is such a huge disappointment. I remember lots of tears and resentments. I had to dump that resentment tank (and I've had to dump a few more full ones since). It kills me to live with that much pain - it sucks the life and energy out of me. My situation was no one's fault and there is nothing to resent. Life just is. You want what you want and you get what you get. It's what you do with it that matters.
I was in Al-Anon (for friends and family of Alcoholics) when I dumped the first tank. It involved, for me, about four months of writing down every resentment I had against everyone. It was a powerful experience and brought a lot of anger and tears. Then I read it all to a neutral party who was willing to give me an ear (no help or advice offered). It changed my life. Brought a very new perspective. Maybe instead of browsing Macy's for a hour, you could write for an hour and start getting it all out.
I spent Sunday with my extended family. Dennis was able to attend and he was "on". It was a great day.
On Saturday, I started looking at double-wides in Florida for the winter half of our retirement years. I always said that I would never live in a trailer and that I would never live in a shack in the middle of the woods. Hah! Shows you what I know. I never thought I'd have a totally disabled husband 4 years after our child was born, either. I never thought I'd be the sole support of our family and fund our retirement. But that's what happened, and, you know what? I'm looking forward to moving to my shack and my double-wide. I can't think of anything better, in fact!
I hope everyone is coping as best they can in their own situation. The only dissappointment here is that when we visited the Oncologist yesterday, he told us he was retiring in July. He has been treating Leslie for 14 years has been helpful in every way and has been up front and honest about any change in Leslie's health. The doctors that will be replacing him are highly recommended. It just feels like we are losing a friend as well as a very good doctor. Leslie is doing ok and started back on her monthly chemo shots that were suspended because of her heart operation.
Michelle, I hope the blind school is teaching you things that will make your life easier.
Kathi, when my neighbor was looking for a place in Florida, he found that at some of the over 55 places only allowed visitors for a short time. Something to keep in mind if your daughter wanted to stay with you for any extended time. There are a lot of places down there and my neighbor who has only been down there for a couple of days is already enjoying the sunshine and warm days.
zakiya1 and Caregiver33 I am think of the two of you too and you are in my prayers.
Kathi and Walt, so nice to see your posts. I have been so wanting to post but time has been so elusive for several weeks now. I got a small breather right now and I must get something out to you both, I have wanted to say HI! and I hope you both are doing good.
Walt, I am sorry to hear that your oncologist will be retiring in July. That must be hard after 14 years, that is a really long time, you all know each other and the trust is so cemented, and the communication between you all is so well-known. I hope Leslie's chemo shots are not too problematic. I do not know much about this, is it painful for her and what are the side effects associated with shots? How long does she have to take them and how often does she have to go in to get them? I wish her strength and good coping with this. I hope you are doing ok. Has Spring arrived in your neck of the woods and does this mean that you will be starting on an array of projects? Have you both been out on the water as of yet?
Kathi, your mail was so contagious! In a good way! :-) You are on a roll, girl! I so enjoyed your enthusiasm and joy at doing what was probably at some point farthest from your mind.... he he. We all always get so set in our ways and what we think we want, need etc. I look forward to reading more about what you find on your Florida searching. I have a feeling it is not really a shack in the woods :-) but I so wish both you and Dennis much happiness on what you find and the "coming of" of your future plans. What you wrote also gave me hope and positivity. I know it comes from experience and time and I hope I get there too. I worry so much about the finances and what will become of it all and me and us, bla bla bla. People always tell me to loosen up and it will all work out in the end, but that does not give me much comfort. So I will keep your stories/experiences at hand and remind myself that it can be done.
We got back last night from the blind course over several days. It was really good and we were 10 couples all in the same position and it was really interesting to "see myself" in many of the other spouses; I am not used to being around anyone else with a handicapped husband (blind that is). So we all got a lot of information and did group things together along with a lot of educating. It was really good, but we were all so tired every evening and I am glad it was only 3 days. Soren and I were the youngest pair by about 15 years, so that was interesting. No one else was chronically ill like Soren - I had hoped to meet someone "in the same boat" as diabetes late stage complications is not the rarest of conditions, but no one this time. We need time to process everything we learned, but it was really good - just learning how to communicate and walk with a sight-impaired person was very useful.
On Sunday we are going to look at an apartment that might fit our needs, we will have to take a loan and that was not my plan at all, but the prices are so expensive here that we have to make adjustments, and anyway we are just looking. It is about 15 minutes further out of downtown, but that will be OK, I guess. Our dog is doing great with the other family (to be honest, it was such a good match, I don't think she ever looked back :-) ) - we miss her dearly but know it was a good thing and so wonderful for her.
I am going back to work on Monday, back to the daily grind, going to be quite crazy with 11 days of e-mails (work mails) to do, so that will take some days to get back on track and in the groove again. I will be going to Hamburg, Germany with a friend, Annette, on April 22 and for 3 days. I need some time off, just to be myself. I will be sending a mail to friends to see if a person can stop by for an hour or so every day just to check on Soren.
I wish you both a great weekend, and also to anyone else that might be here. Take care and you are in my thoughts.
My husband passed this morning. I was by his side. Had the hospital call his sons wife. I just couldnt do it and they wouldnt drop the issue. I cried the whole way driving home. I probably shouldnt have been driving at all but all I have is me now. I stopped at a church and a member followed me home. He came back 30 minutes later with a priest to pray with me. They'll check on me over the next few days. They offered to help with the arrangements and the priest offered to donate his time for the interment. I spent the rest of the day very ill, quiet, and alone with my kitties.
Walt I think she choose a nice color. I hope the project goes smoothly for you.
Michelle I hope things will be easier to manage after the class next month. I do understand being in a rut. Thats probably why I got involved in so many things. on the rougher days i searched cute animal pictures on pinterest or inspirational quotes when I lacked energy.
Im so tired now. I need to rest. I have so much to do tomorrow and so little strength.
Kim, I am SO SORRY for your loss. I am happy that you made it home safely. Though we have never met other than this forum I am typing this with tears in my eyes. It seems as though we have become an extended family by putting our feeling in print with each other. Be safe and you are in my prayers.
Walt
Kim,
I cannot even begin to express how sorry I also am for your loss. Nothing I can write right now is adequate and I just want you to know that you are in my thoughts and prayers also.
I can only agree 100% with everything Walt writes above. From everything you have written I do know one thing; your husband was so very lucky to have you for a wife and by his side and I know he must have felt loved and safe with you. I am crying as I write this and I send you much energy and light. I hope you get some sleep and we are here when you want. Know we are here when we you need your "extended internet" family.
Be safe also
Michelle
Thank you for your thoughts and prayers. Some of the arrangements are complete. I can only do a little bit at a time before I need to rest. Everything will be very simple. I haven't heard from his children so it will be something special for just the two of us. Yesterday a pen pal called. I only met her one time with my husband last year and once after he got sick but we were active on a forum for 8 years or so. She may drive down on Friday and spend a few hours with me. She has a heart of gold and is so thoughtful. The only other call has been from the church. I was able to keep a little soup down last night. This morning I went to church. I was warmly welcomed by the member that followed me home and brought the priest to me. I'll try and go each week. Today was rough though. Another melt down. It's difficult enough that it's Valentine's day. The Priest reminded us it is world marriage day. Lots of couples. Me alone. There came the tears. I haven't been to church since before I was married. Things have changed alot. I was surprized to see technology such as monitors that would display the verses to the songs and tell you when and what to recite.
It's the first year Pantone has chosen 2 colors of the year. This year the colors of the year are Rose Quartz which symbolizes compassion and composure. The second color is Serenity which brings feelings of respite and relaxation even during turbulent times.The Priest suggested I say the prayer for Divine Mercy. I pray it on my rosary each morning and night. I see these colors everywhere from the image of the Divine mercy, to the start of the sunset where the sky is blue and pink, remembering my husbands blue eyes, and our Azalias blooms. Coincidence? I see it as God's promise fulfilled and he is in Heaven.
I need to rest again. Maybe later I'll go sit by the waterfall. There's a large manmade one at a state park very close by. I need to get myself together for tomorrow. I have to visit some cemetaries to select our final resting place and the van started sounding funny so I need to get that checked out. Work has been great. They are asking what they can do to help but nothing comes to mind other than pray and allow me the time to heal. I'm thinking about trying to return next week. I need to be able to eat, keep it down, and stand on my feet for a 10-12 hour shift so we'll see how it goes.
I hope you all are having a special day with your Valentines. All the hard work being a caregiver is for true love. Enjoy and treasure your time together.
Kim, I am glad that some of the arrangements have already been taken care of. I hope the whole process goes smoothly. It is unbelievable that you haven't heard from his kids. I just don't understand people. They can be extremely hurtful by saying things and they can be just as hurtful by saying nothing.
I don't know if it would be impossible to do or soothing with the memories if you listened to Andrea Boccelli.
Kim and Michelle you are in my prayers.
Walt
Kim
Thank you for writing us here on the forum, it was very nice to hear from you and I did not expect you to have time/desire to post anything, but thank you. Thank you for thinking of us. I have not had the desire to write anything lately. I cannot tell you how many times I have been thinking of you and hoping you are coping OK and able to give yourself some rest and reflection. It seems like you are doing that. Your first mail brought everything immediately up and front and shook me more than I imagined such a mail would. I so wanted to do something for you, to help, to be there, to assist you with anything, all I could do was write. And send you prayers and energy.
I am sorry for the lack of response from his family. Maybe if you are at peace with that, it does not matter too much to you or gives some relief of not having to deal with them and being able to concentrate on you and the upcoming arrangements. I also think that the Andrea Boccelli music detail seemed very nice too. Anything that was a source of happiness or a loving memory you both had with each other. I also hope you find a space at the cemetary that you like and feel good about it. I hope your pen pal makes it down to you soon and you have some nice hours together. It is nice to have someone that cares to be with and have a good talk with, and after 8 years you must know each other quite well.
I am happy to read that you find beauty in nature and sunsets and certain things bring a fond memory or reflection. I too get so much out of being outside and seeing things in nature with my eyes, ears and senses. I am able to be in a different here and now, relax, reflect and gather energy. I wish you many beautiful sunsets, sunrises and peace. I am thinking about you these upcoming days and you are in my prayers. We are here.
Walt,
thank you for your note above. I hope you and Leslie are doing fine and things are OK in your neck of the woods. I apologize for not writing so much. I have been thinking of you and hope you are OK. Do you remember when Kathi was supposed to return?
Everyone take care.
Michelle
Kim, I pray that you are coping alright with all the arrangements and with the family. Please try to get some rest when you can. The priest and the church sound very helpful.
Michelle, I hope you are doing okay and that the weather hasn't been too severe. We are going through a cold snap with single digit temperatures and wind chills below zero. I don't think it is nearly as cold as Kathi gets in her area. I thought Kathi would be home by now and I pray that everything went smoothly and everyone involved enjoyed themselves.
Walt
Hello my friends,
I've been home for a week tomorrow but sick and hiding out (just a cold). Sometimes denial takes over and I want to pretend that we'll retire in Florida until we're in our nineties, happy and healthy. I'm back to reality now. Sorry.
Kim, I'm so sorry for your loss. I'm glad you were there for him at the end. it sounds like you had a long and happy marriage with him. You can hang on to that. Not everyone gets that gift from life. Don't know what to say. Take care of yourself. I'm glad you found the church. They sound like extraordinarily kind people. I pray you find some peace.
Michelle, I can relate to being in the kind of slump you're talking about. I may be in one now. Soren's suffering really touched me. I didn't realize all that he's been through already. Loss after loss. You've held up so well. When does he begin dialysis? I'm so hoping that will help him feel less sick,
Walt, the color selection process has brought Leslie to life for me. I can relate to her. The colors I live with are terribly important, I also learned to drive the boat so that I can drag people around on skis, tubes, and wake boards. The boat is my sanctuary in the summer. We don't get the dock out until Mother's Day weekend around here but it's only a few months away! Once a year, I host a Ladies Weekend at our lake home. Various old and current friends show up every year. Some of them I would never see otherwise. I'm looking forward to hosting one again this summer. I haven't for the past couple of years because we were renting out the place. There will definitely be boat adventures!
Florida was glorious. Cold-ish (60s) but mostly sunny. We were visiting dear friends and that filled my heart. We did have one beach afternoon which Dennis loved. He had a rough time at the beginning. The first travel day did him in. The security people asked if he was OK to fly and brought people over to have a look at him. He was shocked. I was a little surprised, too I knew he was overly tired and needed to sit down immediately but he didn't look really bad. I know what really bad looks like. Our friends in Florida were kind but I could tell they were also very surprised by the way he looks. I guess I just don't see it. He spent the first couple of days at their house in bed and very sick. But then he got better and we all had a great time. Lesson learned: either pay the double fare (yes, twice as much) to fly out of our home town, or, if we again make the 3 hour drive to the Minneapolis airport, we should do it the night before and stay in a hotel near the airport. The driving and flying was way too much for one day.
All of this disturbed me and put me into my hiding place (emotionally). I had a dream when I was in Florida that I was at work and simply walked upstairs to the boss and said, "I'm retired now." and left the building. Then I went home and fell into a panic and sobbed and tried to take it back. It was a nightmare. All of my fears came tumbling out. And, guess what, they're financial! That's not a trivial matter, for sure, but at least it's just one thing to deal with. I know for certain now that I need to retire asap to be with Dennis at the lake and in Florida full time. I'll be 62 in April so it's possible but it won't be easy for me. I need to start working out a budget so that I'll feel comfortable that we can live on what we'll have. Then I'll be fine ---- maybe.
Kim, I'm so sorry you're suffering. I wish I could be there for you. You've been in my thoughts since we met but especially during this last crisis.
Kathi
Kim, I'm glad that you don't have to make that long trip to the hospital. I was worried that there were times that you were really tied from all the driving and the situation and that you might fall asleep. I truly was concerned.
Kathi, I'm sorry it was so rough on Dennis the first day of the trip and that it took awhile to bounce back.
Michelle, I wish you didn't have to ride your bike to work in the bad weather.
I am just so happy to see all the dedication that each one of you have put into your marriages. If there were more people in this world like the three of you it would be a much better place to live in. You are in my thoughts and prayers.
Walt
Kathi I'm glad you had a good trip.
Michelle I hope he is feeling a bit better today.
Walt the trips to the hospital were rough. Many nights I had to stop halfway through just to shut my eyes for a bit or get out and walk around. Unfortunatly it was the only option I had. I couldn't afford to miss too much time from work. I needed the insurance and the income.
It's not getting any easier. Each day is harder to find the motivation and strength I need to make it through the day. The older daughter called and left a message. I couldn't pick up the phone. She wants me to reach out to them and invited to take me out of town for a couple of days. A message was left from his exbrother in law he "just found out" on Sunday. The youngest daughter texted a happy Valentines wish for me and her father. I haven't heard from her in weeks. I was told by the hospital that the daughter in law would take care of the notifications. I guess not. I asked the youngest daughter to call her sister. Right now I'm sick. Keeping food down is an issue, all sounds/noise are upsetting I had to unplug the phone and put the cell on silence. I feel as if a big block is on my chest making it hard to breathe most of the time occasionally accompianied by pain. Sleep...LOL. I toss and turn and get a couple hours here and there. A Dr will just give me pills. I'm rather health conscious so I tend to avoid meds. He perscribed some at the last visit but they can be addicting. I never took them. I really dont need another problem. I had my heart checked at the beginning and all was fine. It's just anxiety and stress. Quiet on a computer I can "talk" but in person is still a problem. The sounds, the stress, having to pay close attention to listen, deciding how to respond and trying to maintain composure is more than I can do right now.
I did find a cemetary. What a hard decision that was. The first one I had to leave. I got sick. The one I selected is on the way to work so I could visit often. I was wiped out at the end of the day. I am trying to accomplish one thing each day but no matter the task it seems daunting. Any decision is overwhelming including what to wear each day. I spoke with our attorney's assistant today. It seems everything is in order. A number of years ago we set up all of our documents including a revocable living trust. There's no probate or anything to settle. All debts in his name I am not legally obligated to pay although I'll get ugly letters trying to get me to assume the obligation if I don't. All assets are in the trust so there isn't an "estate" that can be gone after by creditors.
I'll have to return to work next week. I'm not sure how. I work in a restaurant. Vomiting is more than frowned upon its a violation of health code. How can I smile and talk to people? The decisions I have to make are endless (Im a supervisor). I don't think FMLA covers grief. One step at a time......
Kim, my heart goes out to you. You're right to take only one step at a time. It sounds like your body is going to enforce that rule for you. Can you try not to think about work? Next week is more than twice as long as you've had so far and maybe you'll be better. If not, then so be it. You just stay home and take care of yourself.
You know, I don't know much about your husband, not even his name. Can you tell us something about him? What was he like? Clearly you loved him a great deal.
Bless you, Kim.
Kathi
Sometimes going back to work is helpful. That said I will say it is not necessarily true for everyone. Some people immerse themselves in work after the loss of a loved one and others don't. If the workers that you supervise understand the situation, most if not all will understand that you are not yourself at this time. If it is the public you are dealing with they will be unaware of what you are going through and sometimes that makes it easier to just put on a smile and get through the hardest of times.
Kim, you sound like you are taking all the right steps and talking to all the right people to guide you along. I hope that a more restful sleep will be with you soon.
Kathi and Michelle you are in my prayers too.
Walt
Hello friends
There was so much to read and catch up on, and we are riding the highs and lows. Life is so full of these, but I feel that our lives, being caregivers make it all so present and something we have to deal with all the time whether we like it or not. And all of them are necessary to progress and get through, grow, learn and finally appreciate. All my words sound lofty and superficial, also because I am writing what I know to be true, I am just so not there yet, so I am not trying to be a Ms. Smarty-pants here, maybe just writing out loud to myself also. Trying to convince myself also.....
Kim, you are doing such a good job. I cannot even begin to imagine what you are going through and where the strength comes from inside. There are so many things to deal with and just the magnitude of people and tasks must be so overwhelming. Plus taking in the fact that you are probably starting to absorb and take in all that has happened the past years and all leading up to this time in your life and now being you. It is so much to take in and deal with, please remember to take time off and shut the door, close everything out and just be and breathe. Even if it ends up making you cry because the feelings, emotions and amount of it all is overwhelming. I hope you can keep more down soon or find some foods that agree with you more. Food is so important to keep your body running, it needs it so much, especially now. I agree, that try not to think about work even if it seems like a huge thing right now. Take your days one day at a time if possible. I agree with Walt, maybe work will also (albeit difficult) make a space to think of other things, I don't know, we are all different and have different needs. I also think I could have one opinion now and then if I were in your situation I might think totally different than I do now. So maybe I am just blabbing again. I can so resonate with being worn out just being with noise and people and decisions. I hope you get some good quality time in with the kitties on your chest, heartbeat to heartbeat, and be with them and sleep. I wish you better sleep, food that stays in you, energy and taking it one step at a time that will not be so daunting. I am also glad you found a cemetary you liked and was able to find a place that you liked and on the way to/from work. Kim, you are in my thoughts and prayers. I too wondered like Kathi about your husband. If/when you get the time, you can tell us a little more about him, if you feel OK with that.
Walt, how are you doing? How is Leslie doing? What have you been up to the past week? It is funny how we all are connected in a way through this forum. I thought about you the other day and wondered when you would start painting the bathroom and what you guys were having for dinner, if you were making food that night. I thank you for your kind words above, that made me feel very happy. I hope you both are doing well, the kitties are doing good and everything is moving forward in a nice manner. I am still considering about getting one of those Cardio Striders one day, if Soren ever gets some strength back.
Kathi, so glad you are back too! I thought about you alot and wondered how the trip went; seems like there were some things that were really hard (Dennis dealing with a long and hard trip and first day) and will be different next time ( maybe staying at a hotel at the airport the night before etc) but it did you both really good and was worth it and Dennis having a spectacular beach afternoon and being with friends that made you happy. I must say, I like the part about the dream of quitting..... hmmmm..... a sign of things to come soon? Have you given it more thought or had the time to do some number crunching? I look forward to hearing about what you end up deciding on this issue. I hope you are feeling better after coming back from the trip. I understand about "going into hiding" - I do it also. It is necessary for me to pull back and be with whatever is going on within me/around me. It is a very long process and probably something I will have to work on my entire life.
Soren will be operated on to get the fistula in his arm for dialysis on Feb 25, then if no infection, a 4 week healing time. Seems so long, but I think they wait until the last minute before dialysis. I am struggling right now because he is so tired and sick a lot, he has lost so much weight and his energy level so low that he does not even seem like the same husband I married. He has no energy to deal with us, me, our future, thoughts, etc etc. I have to accept this right now, I cannot change it and I cannot force him to be how I want. But sometimes I worry if he will ever be slightly the same man I married.... The blindness has taken a toll of course too, such a big thing to have to deal with.
We are now in the beginning phase of getting a smaller place (downsizing). It might take a while, but we are started and we found a realtor we want to work with. I wish the perfect place would appear in a couple of months so we could get moved before dialysis. Not that Soren can help me move, but it would be one less thing that has to be dealt with.
I have to get back to work.
I wish you all a wonderful day and my best to all of you, take care
Michelle
I was/am so focused on all the tasks/care that needed to be done that thoughts of stepping back were beyond me. To a certain extent they still are. My husband was everything to me. We were rarely apart and had fun doing even simple chores. I was pretty good at couponing and he always came to the store shopping with me. His job was to drive around and get the coupons in the machines on the shelves while I worked through the shopping list. Often I'd have to check the basket because items would somehow "fall in" when I wasn't looking. He used to say he had to come with me to be the "get away driver" because I was saving so much. We were fairly active. We loved to travel usually to Gatlinburg and the Smokey Mountains. We also spent alot of time at Colonial Williamsburg. Our favorite trips were to scenic or historic places. We did day trips locally to the theme parks, zoos,St Auguatine, museums etc. There's lots to do in Fl and were centrally located. He looked forward to planning our monthly "Fun Calander" when I receive my work schedule. We were always somewhere on my days off. One day a month was to the humane society to play with all the cats and drop off donations I picked up couponing to the pet food bank.
He was thoughtful and always worried about me. He watched to ensure I ate enough, got home on time (I commute), at the slightest sniffle he'd insist I go to the Dr. That took some doing as I rarely go to Drs. In all our years a holiday or special occacion was always celebrated with something or somewhere special. In the hospital if I stepped out to use the rest room he would keep asking the nurses "where's my wife". He loved me and I him.
He was physically active as well. He was a powerlifter and worked out daily up until the last year. He did security work (was stage security for the Rolling Stones on tour), large clubs (Lynard Skinner and band were thrown out). He was a construction supervisor on some of the busiest bridges and well known buildings. His work will live on. He was always able to make me laugh. He was someone that if you met him once you would remember him forever. When he started talking...anywhere...others would begin to come by to join the conversation. He was that much fun to talk with. He had a knack for finding himself in comical situations ie a lady got into our van and sat with him while I was in a store. She was chatting away then noticed me and realized her friends van, the one she thought she was in, was 2 spaces over with her friend doubled over in laughter. I came out of a store in the mall to observe a young 20ish girl dancing in front of him. Yup. In the mall. In her thick accecnt she says "oh you must be zee wife". She worked at one of the push cart stands. People were drawn to him.
He always spoke of me with pride. He wasn't afraid to put his foot down here and there though. He loved our kitties dearly. He had asked me to pick up some food. I didn't remember. They had at least a weeks worth but that was calling it too close for comfort for "the boys". That night we went to a show, Sarah Brightman. We always dress to see her. He hated to get dressed up but did it for me. Comming home he stopped at Walmart and bid me to go get cat food "just in case". So there I was shopping in a full length evening gown in Walmart. I didn't blend. It was sure easy to find someone to help me find that isle though.
I'm just lost right now. I force myself out of the house to get one thing done each day and I return totally exhausted. Wednesday I took the van in to be checked. I sat in the dealership crying for an hour. I did call my pen pal who talked to me until it was ready. Yesterday I went to the Dr. yesterday. He signed the paperwork for me to be on leave until the 15th and wants me to try some pills. I couldn't stop crying. I see him again next week. I don't want to take pills and I really just need to be able to eat, not be so tired, and stop crying to be able to go back to work. I can't imagine a customer wanting to address a concern with a supervisor thats crying. I ended up sleeping in a recliner last night. I put the sheets in the wash and didnt have the energy to make the bed. Hopefully I can get past this stage by the end of next week. I was able to keep down a green juice smoothie yesterday so thats a start. Today I think I'll try and put away all the stuff from the hospital away. Each one sent me home with everything that was in the room as they can't use it for another patient. I still havent unpacked my suitcase. I keep hoping its a mistake, a bad dream and that I just need to load the car and get back to him. I guess that sounds silly. To get out of the house there's a park across the street known for it's Azailias. It has a beautiful spring and a waterfall. I may try and go there today. The suns out and there isn't a cloud in the sky.
So how are you all spending your day today? What hobbies does your spouse have and do you share an interest in them too?
i love this post. My husband and had been trying to find activities we could do together before the accident. He even bought a Honda gold wing for longer trips. So I would be more comfortable. i was toying withe the idea of getting my own. Things change. It is one more thing to grieve. But if we open our minds I'm sure we can come up with activities we can do together. It just takes extra planning. This could help Made'Lisa also because everyone in her family has a different need. Without judgement I would say dad could be helped by antidepressants. Depression often shows its self as grumpiness. My husband and I are both going to get individual and family counseling. One more appointment, I know. But without the disease would the behavior be acceptable? That's the question I ask myself.
I want to thank everyone on this forum for opening up. Whether it is about your feelings for your spouse or the problems you are going through or even about your pets and the things you like to do. Like right now I'm not sure if I'll get through writing this because my large white 22 pound cat decided he wanted to be on the computer desk with me tonight. So if he does change things by touching the screen too much or stepping on the keyboard I'll try to continue.
Kim, when you said that you slept on the recliner because you washed the sheets and didn't have the energ to make the bed I thought about the times when I just laid on the bed (not uncovering it) so I wouldn't have to make it in the morning. Those are the days that you know that you are totally exhusted, both physically and mentally. Luckily I too had cats that gave me comfort and didn't make TOO MANY demands.
Michelle, when you talk about the demands of Soren going blind and the kidney problems, it makes me feel somewhat helpless because I can't come over and help you out. It does make glad that you are willing to put your feelings in writing. I hope you know that all this information about medications and doctors and your feelings helps everyone that reads this forum.
Kathi, you, like Kim and Michelle, are so devoted to your husband that I'm proud to be able to read what you all write and know that the world isn't made up only of the people that you see on the news. The world really is made up of millions of GOOD people that care and work hard everyday. I think this forum shows that everytime I read it.
Leslie and I are doing well. She did pick out the color for the bathroom. Now the only thing holding me up is finding carpet that we want for it. Most of the spakling is done, I bought new baseboard trim and it is cut and painted. I know what new toilet she wants. Please don't get the wrong idea, Leslie and I both make the decisions about color and all, I just like it when she picks it out and feels good about it. So things are going good.
Besides boating, Leslie and I enjoy geocaching. People hide things in the woods (different parks and neat locations) and post the GPS coordinates at geocaching.com. Then you go out and find these hidden "treasures" sign a log book and say you found it in your profile on the site. It has taken Leslie and me too many interesting locations and parks, many that we didn't even know that they existed. Some people uses there smart phones instead of a hand held GPS, but my phone isn't that smart.
So that's a little more about Leslie and me.
You are all in my prayers.
Walt
Walt 22 pounds is alot of cat to love. Thats great that the two of you share such a fun hobby. I'm glad she found a color she likes.
MichelleI hope the surgery goes smoothly. I can relate when you said you wonder if he'll be the same man you married and how stressful it is when their condition has changed so much. Its quite a bit to handle. Quite honestly I don't know how I did it. I think between caring for him and all the research to learn plus work at that point I just didn't recognize how much had really changed. I knew it but just couldn't process it if that makes sense. It hadn't hit home. Early on in my husbands illness when he was unable to communicate. The Drs, God, and my husbands will brought him back to me for a bit. Even when we didn't think he could hear us I kept talking to him telling him how much I loved him, how proud I was of him and why, shared that things may be different but there is still a future and good times to look forward to. He thanked me for telling him I was proud of him. He was a strong man and to be at the point where he was was difficult for him. It boosted his morale and made him smile. I think you are doing great job balancing everything on your full plate.
Kathi - I hope the numbers work out for you. Working and being a caregiver is rough.
It was another difficult set of days. A social worker from my insurance company called. I was a mess. She said to get out every day around people. I do leave the house for a bit each day. I probably shouldn't have left yesterday. The funeral director brought the death certificates. I don't know if there is anymore of my heart to tear out. It's in shreds. I had to rest for a few hours but then forced myself to the park. Wouldn't you know they had a wedding celebration going on. It just wasn't my day. I got as far away from the sounds as I could. Later that night I walked around a grocery store and then to see what red box had for movies. I blacked out in the grocery store. Not completly I just went cold and then couldn't see. I sat down in the isle until the feeling passed then went outside to sit for a bit. I picked up 2 movies Everest and A Walk to Remember. I guess I just pushed myself too much. Today in church however the same thing. We were standing and we were greeting our neighbor before communion and my arms, legs and face went cold, it was hard to breathe and everything went black. I sat down. I could still hear people asking me if I was ok. It passed but I still felt funny afterwards. I met the church member after the service that calls to check on me and headed over to meet some of the other members. Nice people. I couldn't stay long. I was very tired and still didn't feel well. I felt better after a resting a couple hours at home. I guess I'll be calling the Dr in the morning. On a positive I did talk to a couple of people briefly without crying & kept some food down but boy did my tummy rebel. I was uncomfortable for hours. Hopefully tomorrow will be a better day.
Hello to you all.
Walt, thank you for your posts and wonderful words, they go a long long way. More than you know. You know how to write the right things in a very nice way. It was also great reading about you and Leslie. And your 22 lb cat. he he I have never heard of that geocaching - sounds so interesting and also a good excuse to get out and see some wonderful places. I also really enjoyed reading about your husband and all that he was and did and how much he meant to you. He sounds like you hit the jackpot on your love and finding each other. He sounded like he treated you as good as you treated him. Loved the making you pick up kitty food "just in case..." and having loads of kitty food... And Kim, so amazing that you could go to the humane society and not leave with at least 20 cats and dogs, I would! So nice to read all your posts and thank you Kim for still sharing and being with us here on the forum even though I can read and understand that your days are still full of struggle and just getting by and I am sure you are still busy to the hilt getting things arranged. I really hope that your blackouts do NOT continue, that is a bit worrying and I really hope nothing like that happens when you are in your car or a place where you can hurt yourself if you fall over. Glad to hear you have kept a little food down, your body is probably in desperate need of it. Please take care of yourself Kim as best as you can of course...
It was so nice to read your posts about your spouses and thank you for your honesty and openness.
My husband has always been my best friend. We have and still can after 18 years talk and talk and talk and never tire of each other. I was first attracted to his intellect and his caring soul. He is a very sweet and kind man and he sees the good in everyone where I can be a bit more wait until I get to know people. He treats everyone with love and respect and is rarely ever in a bad mood. I can always make him laugh and having a big sense of humor is a big plus with me. We both have a major love for travleing and have been to 18 countries together. We have been to many places all around Europe and we also did a coast-to-coast across America trip for 2 months and that was fantastic! We had planned on doing another across America trip soon, but that is not so easy now. I think and plan for us to fly to California next summer to visit my family in Northern California. The dialysis place is a 10 min car drive from their house so it could not be easier. I hope we get this trip off the ground.
We do not have kids and we have a dog, which we have decided to find another family for. It has been heartbreaking having to make this decision. But we live in an apartment complex and the dog has to be walked several times a day and Soren can no longer do this. She is a young dog and deserves a more active life, the one she had when we first got her. Soren got sick and had a bypass (thus the start of this whole timeline) 2 months after we got her. It would have still been possible to keep her if Soren could see. But he admitted to me this weekend that he cannot see enough and is scared of falling down out on the street.She does not get the stimulation and exercise she deserves. She is our baby-dog. We are having to make so many decisions that we do not want to make.
Soren is a film and classical composer. He lives and breathes music. It is a big change for him now that he cannot see. After the dialysis starts hopefully he will get some energy back to get back to work. We both love music and have been to many concerts together, mostly classical concerts together. We love to travel as mentioned and we love to have friends over for dinners and fun evenings full of all sorts of converstations and sometimes board games and good food. I love to cook (not as of the past many months) but often invited friends over for a 5 or 6 course dinner- the works. We both read a lot and have a big movie passion. Which is a good match, him being a film composer and me a film afficionada. We love being in cities exploring and we also both love being in nature and seeing the sights.
I wish you all a good OK to start of the week this Monday, I have to finish up at work so I can get home before the real estate agent comes with papers to sign.
take care all of you
Michelle
Walt, I could really relate to what you said about there being lots of GOOD and caring people in the world. The news is often too much for Dennis (and me, for that matter). There's not enough reporting about the good stuff - like there's no room for it. Almost all of the people I know are hard-working, good people. Few are as kind and devoted as you three, that's for sure.
Kim, thank you so much for sharing about your husband. You're a very good writer. I feel almost like I knew him. I think it's great the way you planned your time off and made sure you spent time together doing fun and interesting things. There's a lesson in that for me. I'm bowled over that he did security for the Stones and knew Lynyrd Skynyrd (even if it was just to throw them out)! Dennis and I love rock music. Our daughter is a rocker, too. She's a good guitarist and loves to play Skynyrd. She also plays viola in the college orchestra and I play classicial piano (not well) so we love classical music, too. Dennis was a medal-winning disco dancer in his day. He is an amazing dancer still (although break dancing is out these days unless he really wants to break something). I hate disco music but I'll endure it for his sake. He will still get up and dance even though sometimes he doesn't make it all the way through a song. Everyone in my family looks forward to Dennis' dancing at family weddings, etc. It's his thing.
It's funny how men can be so elegant and easy when they're into their thing. I'm sure Soren is a sght to behold when his compositions are coming together. And, Kim, it shounds like your husband came into his own whenever he had an audience. Walt, I picture you fishing or working on something. You'd be very meticulous and exacting, I think, and make the work look easy. Maybe it's because men can focus so thoroughly. That same trait is annoying sometimes, too, as I'm sure you all know.
Michelle, I was sorry to hear that Soren has to wait another month plus before his dialysis can begin. Yikes, it's been a long haul. I'm glad to hear that you're still planning your trip to California. That will give you both something to look forward to.
Dennis and I are planning to retire at our lake home (former shack-on-the-lake) so we spent a lot of the weekend talking out how we'll fix it up and what we'll do up there in the north woods every summer. It make us both very happy just to think about it. We've already replaced the roof, windows and siding. The next move will be to vault the ceiling on the interior and add a loft above the 2 bedrooms so that we can host more guests! You guys are really helping me get into this with enthusiasm instead of fear (about money, about being stuck alone in the woods when he's gone...). He loves the place and the boat so much. I love it, too. If I try to plan for "when he's gone", I am immobilized. So I'm giving that up. I cannot know what that will be like.
Kim, thanks so much for sharing with us. Despite your sorrow and your feelings that you can't go on, I can see your spirit alight in you, searching for what's next. Your strength is an inspiration to me.
Kathi
Hi All,
As you all talk about you spouses and yourselves it gives me a better understanding who each of you are and how dedicated and loving you all are. Leslie and I don't have a large circle of friends. We have many aquaintances but not many really close friends. I cherish the ones we do have and probably regret the the circle isn't a little bigger. So what happens is that some of the visits are somewhat superficial and some are from the heart. They are all nice but there seems to be a different level of communication. With the friends you can open up your feelings and not be judged. It isn't as deep with aquaintances. I have no idea where I am going with this, but It is what is coming out as I type. I'm not being critical I'm just putting down my feeling.
Prayers to all.
Walt
WaltK, I truly understand your feelings here. I am in the same boat. We have very few friends, if any. And yes the ones that visit are not there because they truly want to be there. Most of them for me are people that are visiting because they want to please or impress some one else. That can really hurt when you think about it. My hubby has one close friend. He is elderly and not in good health. I found that those I thought were my friends, were really not. The more time I had to spend with my hubby, the less time they had for me. The less I could give them, regarding time and talent, the less they had for me. Accepting the truth about relationships can really hurt.
Blessings.
Hello All
I have been waiting for time to write to you all and check in. I am running and running everyday and can hardly keep up. I have no idea what the heck is going on, but time has not been on my side. I apologize for my absence. I have been thinking of you all and sending you all good thoughts. Next week will be no better, but after that I think I am going to scale back on extra activities. I can feel I need a bit more time to relax when I get home. I have arranged for friends to come over and forget that Soren of course cannot help so I end up cleaning and buying food and arranging etc. I need to be a bit more realistic about time limits etc. I am doing fine enough, I have been crying alot but for me right now it just has to get out of my system, so I do not worry too much about it.
We have had two meetings with the real estate man and now we signed the papers for him to help us find a new apartment and sell our apartment. Next week the photographer will come to take pics. Gotta clean up and make presentable. Then we have a couple more meetings with the Blind Society and then psychologist meetings, that will be that week - oh yeah, then a full time job mixed in there for the heck of it :-).
Soren is in the hospital for his operation tomorrow morning, he stays the night tonight and they scan his arm and keep him under observation til tomorrow. After this, 4-5 weeks, then we are ready for when the doctor says "Time for dialysis". He has lost 16 lbs in 3 weeks, so I am a bit worried, he is so skinny. He loses weight and I gain weight, but of course it is more important that he gain some weight back.
For some reason when I look up at the previous posting it is not Walt's and Kathi's before that, it is from KarenS. Which is fine, but I cannot see what you wrote last (I usually scoll up and down so I can comment). I just remember that I really liked Walt's post and understood exactly what you wrote there. Funny, because I am a foreigner I have no family backbone here, which has been hard. So many of my friends are really close and like family for me. Unfortunately I have no contact with my biological father and biological mother. There are two sides to every story; mine is that I wanted them to be more engaged in my life even though I lived so far away; to keep in contact me and ask about my life. For some reason I kind of just disappeared when I moved to Denmark, it was difficult for them to feel close to me and stay engaged. Which broke my heart and I became very hurt by it. I confronted them about it and it did not end good; I told them I needed a break then because I obviously wanted more than they could give. I have never asked for money or even visits from them here in Copenhagen, just be engaged in their daughter. It was not possible. So I have not talked with them in 10 years, which breaks my heart because I so want a loving family and feel I have a family backbone. Not in this life. So my good friends are my family.
Kim, I have thought about you so many times each day. I hope you are doing OK and getting by, I hope you are eating and being able to sleep and have a bit of time for yourself. Kathi, how are your plans coming along? I get so swept up in your future plans at the lake, sounds like such a good thing and wonderful. I am glad we can help you feel the wonderfulness that this possible decision you might soon make will do for you both.
Take care each one of you, know you all are in my thoughts and prayers even though I am kind of a chicken without a head right now.
Michelle
Walt I can relate to the small circle of friends. True friends that will be with you through thick and thin are a rare treasure. My husband had a couple close friends years ago but as they moved away they lost touch. The last one is still the second contact for our living will. The closest friend I have is probably my pen pal. She's done more for me that anyone else. She gets it. She has a special needs child and an angel before and after her. When I redo my estate documents I'm considering leaving something for her daughter. I'm glad we got all the documents done way back when but we should have reviewed them sooner. Had we had an irrevocable trust vs a revocable trust I would not have had to worry about scrambling to try and create a qualified income trust to protect or assets from Medicaid. If he would have had to go into a nursing home it would have wiped us out. Medicaid uses a 5 year look back so unless one is very wealthy or has long term care insurance planning is important and can help reduce some of the things to worry about.
Kathi so he's a fine dancer. Something I never learned to do. We took classes but my husband didn't like it when the teacher wanted us to switch partners. He didn't like some of the people in the class so that was the end of classes. I still enjoy music though. He liked Steely Dan. I listen to many different things from the 80's rock bands Van Halen was a favorite I went to the after party after one of shows Fair Warning tour I think. I knew most of the security guards at one of stadiums so they kept me in the pit with them stage side to keep me safe. I missed them when I went to other stadiums. I learned the hard way that tear gas makes your mascara run and a high pressure hose results in a bad hair day. Nowadays I mostly listen to classical, classical crossover, mountain music ie Appalachian. One of you mentioned a Viola. Love that instrument in particular the Viola da Gamba. I'm not as informed as to all the differences but I just love the way it sounds. Unfortunately it's rare for me to come across it being played so it's a real treat when I do. It sounds as if things are well on their way for your new home. That's exciting!
Michelle How is Soren doing so far after the procedure? Not having your family with you was probably hard today. Does he have family and are you close to them at all? Since you are saying you miss your family I hope you are able to find a way to rebuild that relationship if that is what you want. In my case it's a closed door. I'm bigger now and with a few years under my belt I won't have the same issues but when I left as it was a life safety issue. It's been 32 years. I enjoy cooking as well. Food is actually my lively hood but it's much different than what I do at home. I went all out on the holiday's making everything from scratch with tons of leftovers for freezer meals as he usually requested a crown pork roast. Mind you it's just me and him and I'm vegan LOL. When I cooked I'd always have to watch things closely or bits and pieces would go missing. He said it was the cats. Hmmmm. What types of food you enjoy and Soren enjoy preparing?
I doing better with eating. Still not eating enough and still weak. We were expecting some severe weather with turned out to be just rain so I stayed home the last few days. Yesterday I had the AC serviced. It was 6 months over due. He seems to thinks it's on it's last legs. *sigh* and then the commercial starts it you factor in the anticipated soon need repairs, energy efficiency it will cost X but if you'd like a quote you may "save" money by installing a new unit. Ugggg. I did do some work outside. I cleaned the gutters and some weeding before the storm. I decided to build a memory garden. It will probably be several as I have a larger yard. The first one has a bench swing with an arbor a light pole and a beautiful mature azalea bush and 2 tall cedar trees. I'm looking for a vine to grow on the arbor. It had wisteria but that died. I may do confederate jasmine as we love the scent or a variety of clementas and both have a later blooming time than the azaleas. I'm leaning towards plants that will draw butterflies. I'll fill in with more flowers to have something always in bloom, a marker and figurines. Today I went to the berry farm and picked up 3 black berry and 3 blueberry bushes that will be incorporated as well. We loved going berry picking and there are several butterfly gardens we enjoyed visiting. I have another Dr appointment in the morning. I'm having trouble sleeping. I get to sleep and then the nightmares come. I woke up kicking in the middle of the night and scared to death. There's no getting back to sleep after that. I've tried warm soy milk, chamomile tea, reading for a bit, leaving the light on, so far nothing is working. I'm trying to find a solution without pills. I dislike taking medicines. I'm sure the Dr will admonish me for not taking the meds he prescribed last week.
I hope none of you were impacted by the storm and that your day is going well. I'm keeping you all in my prayers.
Hi All
I'm sorry to hear that for some of you your parents aren't participating in your lives. My sons live 3000 miles away and I probably don't interact as much as I should with them, but for me it is just a case where they moved to California and I stayed in New Jersey. I was always close to my parents and Leslie's parents which made things easier. My boys know that they can call on me at any time if they need something. They also know that I love and miss them.
Michelle, I hope everything went well with the surgery on his arm.
Kim, The memory garden(s) sound wonderful. I'm sure that everything you incorporate in them will indeed be there to bring back good memories.
Kathi, the lake project sounds like a pretty large thing to do. It does sound thrilling. Designing how you want the house to look both inside and outside sounds very satisfying.
Leslie and I went to the Oncologist yesterday (just for a blood test) to make sure she can resume one of her meds and today she went in for a PET Scan to check to see if the bone cancer is spreading or staying the same.
You ladies know that I'm not a person who writes a lot. So I will wish you well and continue to pray for you.
Walt
Hi all, my name is Made'Lisa and my husband has ALS. He is kind of a special case for ALS since he was diagnosed at the age of 7 and now he is 33. He has very limited use of his arms and legs so he is wheelchair bound but hasn't lost any other muscle mass. This is a good thing. Almost 8 years ago he moved in with me and my 2 children, my son is an 11yr. old who is autistic and mentally half the age he actually is and a 12 yr. old daughter who is perfectly normal other than being a teen in training :), and he was an outgoing pleasant person. he had plenty of patience for my son, he was loving, and loved being outdoors fishing or camping. Now he refuses to leave the apartment most days and spends all day either sleeping or yelling at my son. Don't get me wrong my son does need the constant repeating but not the yelling or the holding grudges against him, just to clarify. I love my son so I normally try to deal with him all on my own so my husband, Adam doesn't have to. Adam doesn't seem to be able to see any other point of view but his, I knew his point of view would always be more known than others here but not none at all for anyone else. I am not even sure everything i wanted to say is coming out right but I am just frustrated. The four of us in this house makes for an odd life and since he makes no decisions so it all falls to me, i have managed to distance myself from everyone outside our house due to either people not understanding or just tired of the drama that these diseases create. we sleep in the living room because it is a 2 bedroom and the kids need the rooms and since he chose to sleep in a recliner that can stand him up, I gave up my bed and sleep on the couch so there is no husband and wife anything. Most days it feels like I am caring for a friend and not a spouse. I feel stretched too thin, lonely, and taken for granted. What can I do to help that without not being there for my son or adam? Adam gets 3 hours everyday with an aide but I have to use that time to take my son to his appointments and therapy and tutoring.
Hello to you all,
I wish you all a nice day. My writing will be sporatic these couple of weeks. It has been a bit crazy the past couple of weeks and the next few are totally hectic with so many things to be done, appointments and agreements etc etc. My time is not enough for 24 hours, but that is just the way it is sometimes, it will slow down again in the future. Right now I just have to keep my head above water. I have thought about all of you so many times the past week. I missed not posting anything and reading posts, I wondered what was going on in your lives and how you all are doing.
Walt, I so enjoy your posts, always have and always will. I have been so appreciative about the way you write to us and what you say. I feel so appreciative because you comment on how hard we work and that it does make a difference. I need to hear that sometimes and feel it - from a 3rd party. And you always write it just the right way. Thank you for that. It is funny, we all have met here and we are friends/supporters to each other in a totally different way than the majority of the people are. But we do not know what each other looks like and how the surroundings in each others lives are. I don't know about you all, but I must have a good imagination, because I have these pictures of what you all (and your spouses) look like in my head; but I also know that the chance of that being similar to reality is impossible. I will not go into more detail because it is ridiculous and irrelevant totally but it is funny how my mind does that.Kim: for some reason your husband looked like Gregory Peck (with a liking for rock music) in my mind. Must be the lovingly way you described him and in my head he became the picture of this handsome gentleman I adored since I was young. Everyone else do not resemble any specific actor/actress, but he dig. Anyway, I got off track there, but I am in a whimsical mood today and nothing gets left unturned. Walt, I hope you and Leslie get back positive results on the various tests Leslie took recently. I hope you both are doing good and getting some miles on your Cardio Strider and maybe there has been some good weather to get out in? Let us know how your projects are coming along.
Kim; I have of course thought of you so often. I send you a specific prayer every day to give you strength and energy. How are you doing? What have you been doing lately? Have you been to the church to talk to anyone or have you talked to your pen pal? How are you coping? Are you back at work or when was it you were to start? Maybe it was the 15th of March, but I don't think you had that much time? Have some things been settled for you with the money issues? And importantly; have you started your memory garden? I thought that that was just a beautiful idea/thought and wonderful process for you also. And it will bloom in all it's love, glory and love that you give it. Sounds like a big project, but it also sounds like you know your flowers and shrubs and greenery. I look forward to hearing about what you decide and end up putting in. I hope you are getting more sleep and a better appetite, Kim. Re the family. I did not have an abusive family or something I had to get away from. My family just does not care, which baffles me beyond words. I miss terribly having a mother and a father and family as a unit, I do not miss them and do not wish to establish contact again. But I sorely miss having a family behind me, with me and for me as I would be for them. I look forward to hearing from you how you are doing.
Kathi; how are you and Dennis doing? How is Dennis doing these days? Has he gained weight? I so know abotu the weight thing. Soren lost 15 lbs in 3 weeks and I worry that he does not get enough nourishment. When I come to our postings I always look to see if there is anything from you and how your plans and retirement dreams and the looming wonderfulness of the Lake House (got pictures of that in my head too - trees and all! :-) ) Are you and Dennis still having good long talks about your dreams and wishes and what to do future-wise?
Made'Lisa: welcome to the forum. Will you please correct me if I have spelled your name incorrectly? I could feel your isolation and frustration. Most likely because I (as probably along with all the others) we have been there / are there/ have experienced many things similar. The four of us that have been writing the past many posts here have different stories/backgrounds and spouses with different issues, but we are in the same boat regarding being a caregiver and dealing with all the difficulties on many levels that this brings along with it. I do not even have children and it must be a whole other extra dimension to be taken into consideration at all times. I can imagine that you have literally no time for yourself. This is one of the main issues (for lack of a better word right now, my mind is blank) is how to cope yourself. We have written about this alot on previous postings (if you go back to read) and it is very hard. We help each other here also by listening and sharing. I was so stretched thin and over-emotional with the burden this is that I was so sad and desperate. Just writing and coming here has helped me personally so much and I am so grateful. I do not know if the burden becomes less per say. But I have a better mind set and having people "in the same boat / understanding" helps so much. I get so much inspiration from Walt, Kathi and Kim and this makes I can deal better with my situation. I hope we can listen to you too and you feel heard and maybe get some ideas from the others. It is very important to every once in a while give yourself a small break where you are alone so you can get your mind rested for a bit and gather your thoughts and emotions. I am quite sure you are on GO all the time and have no time; your mind and body are not used to rest or quiet. It sounds like a very hard situation, also living in a small place and not sharing a bed. Are you OK with him not making any decisions? Is there a way to get him out of the house or is that not possible? Can you get some help with your son, do you know where to look to see if there any resouces to help you? I look forward to seeing what the others write, many times people here have great insight into things or ideas and inspiration.
This became quite a long posting. I am getting by, it is hard but I am moving forward. We have signed the papers for the apartment to be sold in the future and the photographer will come on Thursday to take pics so it can come online. Soren's fistula operation went good this past Friday. So far no problems there. He is very thin and is sick several times a day. We have to give up our beloved dog on the 18th of March (latest if we don't find another family to take her) at the local dog pound, which breaks my heart. They have a no-kill policy and have promised to help with a suitable home. Soren cannot see enough to walk her nearly anymore, She deserves better than what we can give. Other than that just lots of appointments, and the Blind Society will visit again on Thursday to talk things over in more detail - the fist visit was the initial visit. Life just goes on.
I wish you all a good day. You are all in my thoughts
Michelle
Wow, so much happens when I get too busy for a few days. As always, your posts made my day.
Walt, I'm thinking about you and Leslie all the time since the PET scan. Waiting for results, even results that are expected to be good, must weigh you both down. I hope everything is fine and that she continues to improve.
Made'Lisa, so glad you've stopped by. Wow, you have a double burden with the caretaking of both your husband and your son. I hope we can be of some help to you. I have an autistic nephew I'm close to. He does not react well to yelling. I understand why you're concerned. You are going through a lot. It seems like your husband's personality has changed recently. Is this related to his illness? I do so wish we could fix this for you. You seem overwhelmed, and who wouldn't be in your situation? I think if you stick with this group, you'll find some relief. I hope so.
Kim, the memory garden plans made me tear up. What a great idea. And you're out of the house already - doing something creative. That's really good. Not sure I could do as well so soon after. Sometimes I wish we could exchange pictures on this forum because I'd love to see your garden(s) develop. On the other hand, I liked what Michelle said about using our imaginations. In my mind, your garden is beautiful and it smells delicious. Butterflies peep out now and then as you sit in it.
Michelle, you need a rest. My goodness you're busy! So glad that Soren's surgery went well. 4 to 5 weeks seems like a really long time to wait. He clearly NEEDS dialysis. I had no idea that the process took that long. Dennis' nephrologist has had him lifting hand weights for about a year now in preparation for a possible fistula. Evidently that's supposed to help. Sounds like Soren didn't have time for that.
Hearing about your less-than-ideal families makes me sad for you. I have been blessed with a large and very close family who are all within 60 miles of here. While they don't always "get it" and they occasionally say stupid things about Dennis' illness, we love them dearly and I feel like I couldn't even survive without them. But I agree with what you all say about close friends as well. I can tell them things that I can't tell my family. They don't judge and they don't repeat what they hear. Unfortunately, Dennis did not have such a close family. His parents are gone and he has little contact with his siblings (that's a good thing). My family adopted him many years ago. He's very close to my mother and to a couple of my brothers-in-law and to my brother. Thank God for them all.
Dennis is OK. He's lost a few pounds but we fully expect him to regain the weight. In other words, this last round of sickness seems routine and not the kind that will lay him flat for months. We are still making plans for the lake home. It's fun! I have to remind myself every day not to panic over money. I've been saving all my life for this. I don't know why it's so hard to let go.
My beloved niece and her husband and baby have been living in our lake home all winter. He lost his job last fall and they really needed a place to live - for the winter, they said. Well, he still doesn't have a job and they show no signs of moving out this spring as we expected. Personally, I don't think he wants a job. My niece works her tail off but doesn't make enough money to cover day care and a house (yes, the baby's in day care even though daddy doesn't have a job). That will put a damper on our plans for sure. We're debating how we feel about this situation and what we might do about it. We were so hoping to have a great summer there. The lake does amazing things for Dennis and we all love the family time it brings us. Also, we'd hoped to have the contractor do the vaulted ceiling and loft this spring but we can't very well do that while baby Celia is still in the house. Sigh. This is a tough one. Family has its down side too, I guess.
I hope you all have a great rest of the week. Talk to you soon!
Kathi
Welcome to the forum Made'Lisa. We all hope that we can be supportive and helpful in answeringquestions that you have or at least make a suggestion that would point you in the right direction. Although none of us are personally familiar with your situation with both Adam and Bub we do understand many of the care giver problems and know the range of feelings you go through. Whether it is frustration with the spouse and son or sometimes with the doctors and the care the "patients" are getting. I think we all have had anger aimed in many directions. A quick simple example. I was doing the laundry and Leslie wanted to wash a blanket that the cats lay on, well there wasn't enough room in the washer for it. I told her I would do it in another load. She was upset with me and told me it was a big washer and it should fit. I didn't say anything but I got mad. After a minute as was back to normal but I just couldn't understand why she acted that way. Well I think I figured it out. We have to see the Oncologist tomorrow because he called and said her bone cancer has spread "a little" and I know I really scared to hear what he has to say and I'm sure it REALLY has Leslie on edge. As a care giver like a parent you have to pick your fights. If your spouse isn't following doctors orders, well, that is definitely something you have to put your foot down about and if your spouse isn't treating your children properly that is another issue that has to be discussed and resolved. I hope some of this makes sense. Again welcome aboard.
Kathi the situation with the lake house has to be totally frustrating. It sounds like the husband isn't very responsible and maybe some stronger steps have to be taken. I personally would be considered a "softy" and maybe go too far to help people but there is a fine line from being helpful (which is where I see you) and being an enabler. I would start talking to your niece and her parents about the situation. I hope I haven't overstepped any bounds with this. You and Dennis are always in my thoughts.
Michelle it breaks my heart that you have to get find another home for the dog. I'm glad the fistula operation went well and I'll be praying that Soren can put the weight back on. Good luck with the apartment hunt.
Kim I too picture your memory gardens. Each time it is different, like one time there will be a simple stone bench that enhances everything around it. Another time it will be a wood bench with special carvings that depict happy moments in your life. I do hope things have settled down a bit and you are more at ease taking on this stage of your life.
Prayers to all.
Walt
Walt,
I appreciate your comments about my niece and her family. Dennis and I talked this over last night and we agree that we are enabling him. We've decided to meet with them face-to-face soon and let them know that we need the place back by June 1st (or May 1st, we haven't decided). That gives them 3 months to find another place to live and to know that we're serious. I do not wish to involve my sister (niece's mother) since we're all adults and that would just be manipulative. I'll explain that I may retire as soon as Sept. and we need the place to be ready to live in. Simple to say but it will be hard to do when I'm looking into that baby's eyes. Oh, what a tangled web we weave...
Kathi
Kathi, I understand how difficult it is to dish out tough love. I'm sure the baby melts your heart. Good luck.
Leslie update,we went to the Oncologists this morning and the bone cancer has grown "a little" bit. It has involved one lymph node. The doctor changed both of the oral meds that Leslie takes daily and will restart a monthly injection that was put on hold because of her heart surgery. We were definitely worried when we went into the office and after the explaination we felt MUCH BETTER. So everything is good unless the new meds cause some bad side effects. I quess we will find out in the next month or so.
Walt
Walt, I've been very worried about Leslie's test results, too. I'm glad to hear that you're not as worried as you were before seeing the doctor. I hope the new medications will not be too hard on her. You are both walking on such a sharp edge. I don't know how you do it.
Dennis was crabbing at me when I got home on Friday. I soon found out if was because I had hockey tickets and he was too sick to go and couldn't convince Emily to go in his place. I guess he thought I'd be upset but I wasn't, of course. I understand. It's funny that he still does that after all these years of sickness. I can tell by looking at him how he feels. He can't hide it from me.
I'm missing you, Michelle, Kim, and Made'Lisa. Whare are you?
Kathi
Hi all
Like Kathi says, you can recognize how your spouse is doing even if it isn't done verbably. The way they hold their head or the slightly different tone in their voice are ways we know how they feel. The lack of concentration is a big give away. Over the years I've learned to look for all the different signs that would indicate how Leslie is truly feeling. Sometimes they say one thing but you can tell that isn't exactly how they feel. I guess knowing and loving your spouse is a very good gift to a care giver.
You are all in my prayers.
Walt
Hi all
Yes, this is Michelle again, I hope everyone remembers me :-).
Kathi: I got happy when I read your words "I may be retiring soon....." I can tell a lot of thought has been going into your future plans and you are voicing your possibilities and even planning on projects with the lake house. Love it! I always look forward to what you have going on and when the final decision will be made about what you want and incorporating this into your life, plans and dreams. I am sorry that you have to be the person who dishes out the "tough love" as Walt also puts it on your neice. I am sure that is not easy for you with the baby involved. Maybe this will force your neice's hubby to start thinking about his family now that there is a deadline and maybe get a job to support them also. If you had the conversation already I hope it went smoothly and if it is still in the future, lots of energy to make it a positive and supportive conversation. It is your house, I can understand how you want to get the projects done and ready for you and Dennis. I hope Dennis is doing good and I nodded in acknowledgement about the hockey tickets and the underlying issue.
Walt: I read your (and Kathi's posts) and so wanted to write, but time is so elusive for me and I didn't want to just send a quick note that seemed superficial or nonchalant. I was very happy to hear you and Leslie both being fine with the Oncologist's meeting and that was a relief to read. I hope the meds are easy on her and I hope she is feeling and doing good. Please keep us posted. Am I understanding the situation right that she has been good and stable for quite a while now? How are you doing Walt? Is everything OK with you? Do you get out on your own sometimes? Do you need that? What is the status on your projects also and of course, are the kitties doing good?
I am in the midst of several weeks with so many things to do everyday, I really hope it lightens up a bit next week. I can feel that I am starting to have a struggle managing it all; I am sleeping bad and wake up with a headache because I clinch my teeth in my sleep. I sleep fitfully and I really hope this passes. I am starting to feel the pressures of having a cronically ill and blind husband. The blindness kind of knocks it all out of the park and not in a good way. I forget constantly that I cannot leave anything (task-wise) for him to do; be it laundry, booking appointments, new time, booking them to pick him up and deliver him, telephone calls, setting the table for company, cleaning, anything. I cannot believe how much we all take sight, mobility and doing anything for granted. You have no idea how big it is until it is not there. I had no idea, but it is my daily life now. Everything is on me, and I mean everything. I am not very good at stopping up, I keep going and going and going. I have to get better at this soon. And yes, you both were right; this selling the apartment is a huge project already and I am alone with it, the realtor, the pics, the cleaning, the documents (just finding them!), everything. WOW! The dog issue is just terrible. Just knowing that next Friday is her last day with us breaks my heart. We love that dog so much. I feel like I am failing her, we are her third family and it took so long to gain her trust and she is such a good dog. I cry every night in bed over this, literally bawl. It physically hurts my chest to think about this in detail. I do not know how I am going to get through the day. Oh boy, never dreamt this could happen. I feel like I have to make all the decisions also because Søren is ill and does not have the energy or desire or interest to do anything. So to make a very long story short, I am feeling the pressure. Plus being so booked with tasks that cannot wait is making me feel a little older than my real age. I worry to much about our financial situation, but I am doing what I can because now we are moving, that should help in the future when we get moved. I always dreamt of growing old with my husband and travelling and being financially secure and ok, now I do not have any idea what the future holds for me/us/anything.
Ugh, the sun is shining here in Copenhagen, it is almost the end of my work day and cool and clear outside. In a couple of hours I will get on my bike and get some fresh air and bike home.
I wish you all a good day and my thoughts are with you.
Michelle
Hi All
Michelle I haven't written in a couple of days because everytime I read your post my eyes fill with tears and I can't type. You are so overwhelmed with so many different things all at once. Selling the house is a major task by itself and can bring anyone to their knees with no other problems going on. Soren's condition would stop most people in their tracks but you have provided for him and guided him all this time and I know you will continue. The dog issue seems to be the biggest imediate heart breaking situation. The majority of cats that Leslie and I have had over the years have just showed up at the door looking for something to eat. These were not ferel cats, but cats that had a home at one time and we can only summise that people have let them out in the woods near our home. There are at least three other ones roaming the neighborhood at this time that some of the people on the street tend to. It is so difficult to give up an animal of any kind, but you are doing what is right for the dog by giving to the organization that can find him another nice, kind and friendly home. This seemed to make sense when I started writing and I guess what I am trying to say is that you are doing the BEST thing for the dog even if it so difficult for you. I applaud you for being so selfless.
My prayers to everyone.
Walt
Aw, Michelle, it's so sad that you're giving up your dog. Walt's right. You're doing the loving thing for the dog. I'm sure he knows he's loved. I wish I could make you slow down or do some of the many tasks for you. You're doing too much. I worry about finanaces all the time, too. We have moved (downsized) twice so far and will do so again when I retire. I can say that every move was a good one, financially, and that any house with us in it together is a good house. A little financial breathing room goes a long way.
Good news on the lake home! My niece's husband got a job! A good job with benefits and everything. Dennis and I drove the 90 miles to the lake home this weekend to meet with the contractor who is anxious to begin the interior work. So we've had the talk with my niece and nephew. They will be out by May 1st. I don't feel the guilt I evpected to feel since he is now gainfully employed! Someone is watching over them.
I have not seen the lake home since the work began last fall. It has all new siding, roof, and windows with an additional 2 windows and a sliding glass door on the lake side (in the kitchen) that were not there before. It's beautiful. So much brighter - and it doesn't look like the shack that it is any longer! I'm excited about it, despite the cost. On the interior, the contractor will be vaulting the ceilings and adding a sleeping loft over the 2 bedrooms (with a nice dormer overlooking the lake). Dennis and I will redo the kitchen ourselves. We've done several kitchens in the past and there's not the usual urgency since we don't yet live there. It's hard to describe how this makes me feel. Dennis was really excited to see the place and he looks so calm and happy there. Once the ice is out (lake is still frozen), he'll be out in the boat on every good day he has. Melts my heart.
Thinking of you all, always.
Kathi
Hi,
I'm glad i found this forum. Our life was very good, we just got engaged and got our new place, until 3 days before Christmas in 2013 when he got hit by a car and our life went to hell forever. He almost died. His injury was brutal. The doctor asked me to remove life support, obviously I said no. Although he has progress a lot ( he can eat and talk, he doesnt have tubes or anything anymore), he was in therapy and then he was discharge to a nursing home. Worst place in the world. I fight so hard for him and took him home with me. That was 15 months ago. I been his sole caregiver since then, although before I was always on charge of the paperwork, etc. His family sucks. His mother doesnt help at all , she is like another child so I dont like to have her around, his sister lives in France and she barely contact us. His half brothers didnt even visit him. We live in Canada, I moved here by myself 6 years ago looking for a better future, and right now I'm stuck in a shitty situation, because I dont even get benefits from the government but I have to figure out every month how to cover all the expenses, food, etc ( he gets a little help from the government but obviously its not enough). I have 2 careers and I'm still work from home, but its getting harder and harder to keep motivated, and sadly I'm very angry with him and I been drinking this last couple months, still I do what I have to do, I take him to therapy ( well im his physical therapist anyways), I cook, clean, do all his bathing and bathroom stuff, paperwork, doctors, lawyers, like EVERYTHING. He is a sweatheart and we have a lot of affection, but I'm young and i miss having passion, a regular sex life, getting flowers and all that stuff, he was so perfect and I cannot leave him, but the situation is getting harder and harder and the truth I'm not being as good anymore cause I'm like one step closer to burnout. I know people recommend therapy and all that, I tried some but was such a waste of time, basically me bitching to a lady that obviously could care less about my problems and even to do that I HAVE TO plan everything, who will come to watch him while I go, etc, besides its not free. At some point even consider having a open relationship and talk with him, he agreed but reality is that I dont even think I can do it. I feel like im stuck in my memories. During the day I'm fine but in the nightime I just wanna sit and have a drink, and cry thinking about how good was my life 2 years ago. This is not a healthy way to live life and I know, but I cannot let him go and die slowly in a dirty nursing home, but on th other hand im so frustrated.
Thanks for reading, I usually dont vent ( I ride my bicycle, that helps me a lot), but sadly before the accident, I have my own issues that got better when i was with him, but lately my eating disorders are back and also my drinking. Its so hard to deal with everything all by myself, and right now on top of everything I have to fix my visa paperwork, its just like the problems never seen to end.
Sometimes I wish this was a nightmare and I can wake up and everything will be fine again.
Welcome to the forum. I hope you find some comfort here.
You are so young to have this happen to you. It makes me cry. Clearly you love your husband/fiance very much but I can understand that this wasn't the life you two dreamed of. My life was similarly turned upside down but we were not so young and not so early in the relationship. It may be difficult to see now, but there are great rewards in staying with the one you love, whatever his or her condition. You must know that since you made that choice once already. You're facing some unbelievable challenges - yours and his. I don't know but I don't think you can go on like this.
Is there care available for him during the day? Could you get nursing help (not nursing home)? Then you could get a job or do something that fulfills some of your needs. See friends once in a while. I don't know Canada's health care system but it seems like there should be some home care possible. You need a break.
Of course you know that drinking doesn't help. You'll have to deal with that and your eating disorder. I was married to an alcoholic in a past life and spent a lot of time in Al-Anon. It was extremely helpful and brought some gratitude back into my life. I know that AA helps people in much the same way. And they DO NOT JUDGE! No noe knows where you've been but you.
I believe that if you learn to take care of yourself, you'll find joy in your life again and be much more able to help your husband/fiance. My heart goes out to you. Here's a big electronic hug!
Kathi
Hello all. I have been reading the post and they touch my heart deeply. I have been a caregiver to my husband of 46+ years for the last 19 years. It started when my hubby had a massive stroke 19 years ago. It has gotten much worst since 2006 and now he is bedridden. I feed, bath, cloth, medicate and diaper change daily. My hubby has been on hospice twice and is now off because they claim he is stable. I have no help. We have no family in our state and very little support from anyone else. The feeling of isolation is overwhelming somedays. The need to cry and just sit in a corner some place and get it all out takes over. I have had people to tell me that the day is too pretty for me to cry. They have not walked in our shoes so far. Getting out and just doing nothing is almost unheard of. I sit and starr at the four walls mostly in my kitchen while trying to watch tv. The feeling of isolation is one of the hardest areas to get thru as a caregiver. People will ask me if they can pick up stuff from the store for me but never think to ask to sit with my hubby so I can go to the store for myself. Some days I look at my hubby and I have to ask God to please help me not to hate him. My life has been taken over by his need for care. I have to remember that he courld be feeling an overwhelming sense of helplessness. So much has been taken away from him. He use to be a very active man even after the initial stroke. He would help others and could barely walk himself. But now with one leg amputated and most of his muscle mass gone, it's a completely different store. He chokes very often when eating. He has been tested and the test come back negative for any swallowing problems. I often walk away from him when this is happening because it is hard to see. He is all I have and he depends on me so much but it also strips so much away.
God bless all.
Hi All
Had some problem logging on, but it is straightened out now. Let me say welcome to our new forum members Caregiver33 and zakiya1 we hope that we can be of some help to you along the tough road of being a caregiver. Please don't hesitate rant or vent as you write here.
Kathi that is such great news about the lake house. It is amazing how SOME things work out for the best. I'm sure you and Dennis will spend many wonderful times there. Good luck with the kitchen. We almost completely redesigned ours by closing off a window and a door to add much more cabinet space and counter space.
Caregiver33 it is so difficult to become a caregiver at a young age. You covered a lot of things that change in your life when you have devote so much time and energy into doing all those things required of you now that you are a caregiver. Every aspect of your life changes in some way. Unexpected things that come up at a moments notice. Today I had to take Leslie to the Oncologists because she developed a sore in her mouth because of new medication. I'm retired so working wasn't a concerned, I just had to stop what I was in the middle of and take her. This was nothing major but it just one of those (many) little things that keep you so busy and concerned. They told what medication to use on her mouth and we were on our way. The big things that you mention from all the personal care to doctor visits and the everyday paperwork all mount up into a huge pile. The lack of family support is anther vital issue when you can get a short break just to relax for a few minutes or do something for yourself. Like Kathi said, the alcohol will present many more problems than it will solve. My prayers are with you.
Zakiya1 I am sorry for your situation and wish that you had family or friends that could lend a hand. It seems to me that everyone on this forum is in the boat when it comes to family and friends helping out. I think that might be one reason we all looked for a forum that had people in like circumstances. There are so many parallels even though each medical problem is different.
I have never opened up to "strangers" as I do on this forum and I now feel that we are friends that will listen and give direction or if we have gone through a similar situation offer advice to help you along the way.
So now we have a couple of bicycle riders and a couple of boaters on the forum. For me this is a long entry, so I'll say bye for now. Please be safe.
Walt
Walt, I'm so glad to hear from you again! I hope Leslie's mouth sores improve quickly and that's the worst of the side effects.
zakiya1, 19 years! That's a record on this forum, I think. And you're still very young. Your devotion to your husband is something else. You sound overwhelmed. You also sound lonely and isolated. We all feel that way sometimes - often, maybe. I'm sorry you're suffering. I hope you find some comfort here. Is your husband still able to communicate with you?
I really don't have much news. The kids will be out of the lake home on May 1st so the contractor will start then and we'll have some lake time before Emily (our daughter) and I go to Europe in June. Meanwhile we have her graduation from college! So proud of her. She'll have a BS in Linguistics with a minor in Math. Not sure what one does with that but she'll figure it out. We will all be very busy once Spring arrives and we're all looking at major life changes. It should be interesting.
Michelle, are you still planning the trip to California? When does dialysis begin?
Kathi
Yes, it's been a total of 19 years since all of this stuff began. He has been totally disabled for the last 6 years. Yes, I am tired, isolated and lonel, but God gets me thru it each and every day. I have my house up for sale and hope to make a transition to Florida. Our children and grands are in Florida. I'm hoping I'm making the right decision to move. It takes so much time to organize every thing especially when you are trying to do it alone. But God. Yes, my husband communicate a little. It is very hard to understand him most of the time but he tries very hard.
I hope all is doing better. May God bless each and every one as you go thru your different struggles, challenges and all that brings you joy.
Blessings.
What a lonely day this day was. Trying to find joy in something. Feeling like crying most of the day. Need to get it out tonight. Spent most of the day when free looking thru Macy's website. Looking at the same pages over and over and knowing full well I was not purchasing anything. I guess I was hoping that the pages would change. Thinking, it's Palm Sunday and Easter is next Sunday. Families will be having dinner and gathering together. What will I do. The same thing I have been doing for many years now; changing diapers, feeding and giving medication. Very little else. Tears running down my face as I write these words. Not a happy day. I know this moment will pass but for now it is very real and the pain of my situation is very real. I will let my tears flow until it lifts and things don't look so bad. This is a good place to vent and share. I know that there are many in my same situation and some may even be in a worst situation.
Blessings.
zakiya1 I'm sorry you are having such a blue day. Do you have anything (hobbies) that you use to take your mind off of your situation. Some on here listen to music to bring some joy into their life. Others use their mind to design gardens and then follow up by doing that task. Others might draw or paint to pass some of the time. I personally do mechanical things working on cars and boats. There are many times I just watch Leslie to see if she shows any signs of discomfort and if she does try to gently urge her into a better position or do some thing to busy her mind. You have an extremely intense caregiver position with all the constant care you are required to give. I'm glad you found this forum so you can express your feelings. This helps us all to understand someone else's situation.
Kathi I'm glad the lake house problem is working out.
Leslie's mouth sore is healing and I've been spending a lot of time at a neighbors house helping him get ready for a move this coming weekend down to Port Charlotte Florida.
You are all in my prayers
Walt
Hello Friends (I can see two new friends have logged on - welcome Zakiya1 and Caregiver33),
One of the many wonderful things about this forum is that people in the same cargiving situation can come here, be open, vent, cry, share, get inspiration and also of great importance realize that there are others out there that understand and have had similar experiences. This forum is a wonderful "lifeline" for me and I am so grateful for those who are here, have been here and for the new that come. Lukily also is that we have our ups and downs at different times and when we are down there will be others who having a more stable situation at that time and can offer the energy, understanding and empathy that we need and we can do the same at another time.
Hello Caregiver33 - reading both you and Zakiya1's post really hit home, I could literally feel your pain and despair. I honestly think that being a caregiver is one of the most difficult life situations we can experience. I am sorry for the pain and the immense burden you are subjected to. Family or for many the lack of, is for many here, a big disappointment. I am in a similar situation. It is also hard to ask for help and support from those who should be closest, you think you could expect it or that it would be there more than it is, but that is often not the case. I am getting much better at accepting that this is the way it is and work around it and get better at asking others from help. I have a very very very long way to go, but I am getting better. I understand your anger, resentment, helplessness, despair, the wish that everyhing would be back to normal, the loss of intimacy and remembering how things were and how it would be so nice to have that again. It is such a long process and it has just as much to do with you as it does your relationship to your husband.
I am going to say this and sound like I am putting my nose in where it does not belong - but please don't drink. You deserve better and it does not help or serve you. It is not a viable solution to anything. Nothing else is treating you well in this situation, you letting yourself drink though is you making a decision not to treat yourself how you should be treated. You need to be strong (and by this I mean healthy and in your right mind) for first of all YOU and then your husband. Sorry if I sound like a nagging mom, but I have never ever heard of this ever helping in any situation. I do understand your eating too much, I do that too, and I have to work on that big time. I comfort eat. It makes me feel full and strong and that is not good, I eat too much. Thankfully I am active and in good health, but I do weigh way too much, so I understand that situation. I cry many nights, and I mean many. It is like this is the time where I can finally slow down and relax and then the whole weight of everything is too much and I have to let it out. I am so tired of it, I wish it would stop, but I also realize that I have to let it out and not keep it pent up, I do believe that it is unhealthy to let things go inward.
I think we all know how important breaks are for all of us and how we have to figure out, albeit difficult, how to work it out, as impossible as it seems. People would tell me all the time how I needed to take a break and I would get so angry inside because I did not know how to make that happen. It seemed impossible. You have to spend that extra time (that you do not have, I know), how to figure it out and start. I am so not there yet and I have been going on several years now, But I have figured out how to do it every once in a while and it makes a big difference. I hope you can find a way. Do not get discouraged that it takes a long time, I am only about 10% of the way, but I know know that at some point my efforts will work out.
Zakiya1: A lot of what I wrote was also to you above. I also wanted to mention that I do not think anyone here on this forum would not disagree with how big the subject of ISOLATION is, or the feeling of it. I think it is also so big because we never imagined how big it is and the form it takes, including ourselves. It is also something that we cannot even really explain to our closest friends or family. You have to have experienced it before you can fully express it or understand it. I have good friends around me, and I talk very open and freely about it, but I can clearly see (and hear by their comments, ideas and suggestions) that they cannot really grasp it. They will say things that they do not mean in the way I perceive them, but it shows that they do not really get the situation. And I cannot blame them, would I in the same situation without having experienced this? But it is hard and the isolation is daunting. I also think some people do want to help and do not know how to vocalize this or ask to help. It is also hard (at least for me it is) to ask for help. I wish I was better. I try to learn to vocalize how it would help. So they can stay with Soren (my husband) for a while so I can get out to do tasks and breathe. Have you thought about vocalizing what you need (if this is a possibility) so you can explain how it would be so you can get out? Then at least they can say no (or yes) if they do not feel comfortable about it, but at least both sides have the opportunity to say something. You might get a surprise every once in a while and whatever helps you is good.
One thing is for sure, welcome here and feel free to be open with us. Walt and Kathi are wonderful and I look forward to hearing what is going on with them every time. They give me inspiration and ideas and support, I am so happy and grateful for this.
Walt and Kathi, I have thought so much about you both and Leslie and Dennis too. I hope you all had a nice weekend and things are still going in a good and forward manner. Walt and Kathi, thank you so much for your kind and encouraging words. Is Leslie doing good now and the sores gone? Has the lake become unfrozen so Dennis can get out on the lake and be happy? So happy to hear that the house is back in your hands by May and that it is such great shape and it looks good with a lot done. Congrats on the neice's husband getting a job and also even more with Emily's upcoming graduation! Proud Mom and Dad, huh?
Bailey the dog ended up going directly to a wonderful family in a small town with another dog and is so happy in her new digs. It was a horrible week but the way things ended up are fantastic. This family heard about our situation and contacted us, they have been looking for a smaller dog (than their Golden Retreiver) who could be a companion for their dog. They met, and it was buddy-love at first sight, The dogs frolicked and played and ran around, they are now instant best friends. It was so sad, but we know she is in the best place and getting more than we could give her. The lady goes to dog training 3 times a week and an avid dog trainer, so it could not be better. So our apartment is quieter now, but we are happy with the decision. Takes a huge weight off my shoulders and conscience. So, now on to bigger tasks, finding a new place to live and getting things in order.
I am doing fine enough, not as sad as the past couple of weeks. Blind School next week and that will be interesting.
I am at work and I ended up writing more that I expected, but I have not been here for a bit. I send my hellos, hugs and wishes for a good week for all. Take care and please excuse all the typos, I do not have time to go through this, have to get started on Monday's tasks.
Best wishes
Michelle
Hi All
I am always saddened when I read the problems everyone is going through and I am always gladdened something good happens, like going to a hockey game or graduation, but I sat here with tears (of joy) rolling down my cheeks when I read about Bailey going directly to a good home.
Walt
Me, too! Goosebumps and tears about your dog. Animals are so precious to us. I'm so glad she found a happy home with a friendly sibling dog. Thinkgs just couldn't be better for her. I'm so glad.
Kathi
I guess we've been busy. No posts for some time now.
Zakiya1, I've been thinking about you lately. Your loneliness is palpable. I remember what it was like when I was younger and slowly realized that my life was not turning out at all the way I expected. It is such a huge disappointment. I remember lots of tears and resentments. I had to dump that resentment tank (and I've had to dump a few more full ones since). It kills me to live with that much pain - it sucks the life and energy out of me. My situation was no one's fault and there is nothing to resent. Life just is. You want what you want and you get what you get. It's what you do with it that matters.
I was in Al-Anon (for friends and family of Alcoholics) when I dumped the first tank. It involved, for me, about four months of writing down every resentment I had against everyone. It was a powerful experience and brought a lot of anger and tears. Then I read it all to a neutral party who was willing to give me an ear (no help or advice offered). It changed my life. Brought a very new perspective. Maybe instead of browsing Macy's for a hour, you could write for an hour and start getting it all out.
I spent Sunday with my extended family. Dennis was able to attend and he was "on". It was a great day.
On Saturday, I started looking at double-wides in Florida for the winter half of our retirement years. I always said that I would never live in a trailer and that I would never live in a shack in the middle of the woods. Hah! Shows you what I know. I never thought I'd have a totally disabled husband 4 years after our child was born, either. I never thought I'd be the sole support of our family and fund our retirement. But that's what happened, and, you know what? I'm looking forward to moving to my shack and my double-wide. I can't think of anything better, in fact!
Kathi
Hi All
I hope everyone is coping as best they can in their own situation. The only dissappointment here is that when we visited the Oncologist yesterday, he told us he was retiring in July. He has been treating Leslie for 14 years has been helpful in every way and has been up front and honest about any change in Leslie's health. The doctors that will be replacing him are highly recommended. It just feels like we are losing a friend as well as a very good doctor. Leslie is doing ok and started back on her monthly chemo shots that were suspended because of her heart operation.
Michelle, I hope the blind school is teaching you things that will make your life easier.
Kathi, when my neighbor was looking for a place in Florida, he found that at some of the over 55 places only allowed visitors for a short time. Something to keep in mind if your daughter wanted to stay with you for any extended time. There are a lot of places down there and my neighbor who has only been down there for a couple of days is already enjoying the sunshine and warm days.
zakiya1 and Caregiver33 I am think of the two of you too and you are in my prayers.
Walt
Hello to you all
Kathi and Walt, so nice to see your posts. I have been so wanting to post but time has been so elusive for several weeks now. I got a small breather right now and I must get something out to you both, I have wanted to say HI! and I hope you both are doing good.
Walt, I am sorry to hear that your oncologist will be retiring in July. That must be hard after 14 years, that is a really long time, you all know each other and the trust is so cemented, and the communication between you all is so well-known. I hope Leslie's chemo shots are not too problematic. I do not know much about this, is it painful for her and what are the side effects associated with shots? How long does she have to take them and how often does she have to go in to get them? I wish her strength and good coping with this. I hope you are doing ok. Has Spring arrived in your neck of the woods and does this mean that you will be starting on an array of projects? Have you both been out on the water as of yet?
Kathi, your mail was so contagious! In a good way! :-) You are on a roll, girl! I so enjoyed your enthusiasm and joy at doing what was probably at some point farthest from your mind.... he he. We all always get so set in our ways and what we think we want, need etc. I look forward to reading more about what you find on your Florida searching. I have a feeling it is not really a shack in the woods :-) but I so wish both you and Dennis much happiness on what you find and the "coming of" of your future plans. What you wrote also gave me hope and positivity. I know it comes from experience and time and I hope I get there too. I worry so much about the finances and what will become of it all and me and us, bla bla bla. People always tell me to loosen up and it will all work out in the end, but that does not give me much comfort. So I will keep your stories/experiences at hand and remind myself that it can be done.
We got back last night from the blind course over several days. It was really good and we were 10 couples all in the same position and it was really interesting to "see myself" in many of the other spouses; I am not used to being around anyone else with a handicapped husband (blind that is). So we all got a lot of information and did group things together along with a lot of educating. It was really good, but we were all so tired every evening and I am glad it was only 3 days. Soren and I were the youngest pair by about 15 years, so that was interesting. No one else was chronically ill like Soren - I had hoped to meet someone "in the same boat" as diabetes late stage complications is not the rarest of conditions, but no one this time. We need time to process everything we learned, but it was really good - just learning how to communicate and walk with a sight-impaired person was very useful.
On Sunday we are going to look at an apartment that might fit our needs, we will have to take a loan and that was not my plan at all, but the prices are so expensive here that we have to make adjustments, and anyway we are just looking. It is about 15 minutes further out of downtown, but that will be OK, I guess. Our dog is doing great with the other family (to be honest, it was such a good match, I don't think she ever looked back :-) ) - we miss her dearly but know it was a good thing and so wonderful for her.
I am going back to work on Monday, back to the daily grind, going to be quite crazy with 11 days of e-mails (work mails) to do, so that will take some days to get back on track and in the groove again. I will be going to Hamburg, Germany with a friend, Annette, on April 22 and for 3 days. I need some time off, just to be myself. I will be sending a mail to friends to see if a person can stop by for an hour or so every day just to check on Soren.
I wish you both a great weekend, and also to anyone else that might be here. Take care and you are in my thoughts.
Best wishes
Michelle