Walt, I'm glad to hear that Leslie is doing so well. I'm glad the cardiologist said everything is looking good. :)
I'm glad you're having some nice weather. It rained some here last night, and today a little bit. Jennie and I saw a rainbow today,it was so large and stretched across the sky. It was so beautiful! :) It was windy and crisp, rare for California, but enjoyable.
We went grocery shopping to get something for dinner and decided to get marshmallows for hot chocolate.I almost forgot to buy cat food,I'm glad I didn't, we would have had a very cranky cat. :)
On Black Friday on of the local pet stores had a lot of things on sale, but I stopped in and bought 6 cases of cat food. My 3 cats go through 2 cans a day plus I always have dry food out for them. They will be happy for a long time.
Rainbows are a great thing in nature and they almost always bring smiles to everyone's faces. I have 2 sons that live in California. One is in San Diego and the other is farther north in Menifee. It is amazing the difference in temperatures and weather conditions between the 2 places.
Our local Bald Eagle was in his normal place in a tree acrosss the creek. I had see him for about 2 weeks. They look so majestic when they fly around.
Another nice weather day here. Leslie went up to the library to pick up a couple of books that they were holding for her. Then she did a little shopping. It is great to see her going places and doing things on her own. She has been a trooper though everything she has been through.
My prayers are with all that read this.
Walt
The marshmallows sound like a great addition to the hot chocolate.
Good to hear that all is well with you both. I hail from Nothern Minnesota where we're actually threatened with a green Christmas. Very rare indeed. It's supposed to snow Wednesday. I'm hoping it does even though I dislike the cold now that I'm older. Minnestoa - Christmas - snow. That's how it's supposed to be. Last Christmas we had a couple of feet of the stuff and it was COLD! I can't say I miss the cold, just the pretty snow.
We had a very busy weekend and Dennis was well, mostly. He makes me laugh every day but he was particularly funny this weekend. My poor daughter took the brunt of it but she can hold her own. Daddy's girl.
We did run out of cat food on Fridayso Kikkoman Kilmouski got tuna on Saturday morning. Happy cat, happy life.
Snow was much nicer when we were younger. Now I just try to get a few pictures of the waterfowl and snow before there are any footprints. Or pictures of the snow and ice clinging to the bushes and trees. Then I go out and shovel.
Kathi, it is great the Dennis had you laughing so much. It is over used about laughter being the best medicine, but it almost always lightens and brightens the heart.
If Leslie opens a can of tuna, all three cats show up. It doesn't matter if they have just eaten or not, they are there. Amazing they actually share pretty fairly.
I'm so happy to hear that Dennis and Leslie are doing so well. :)
It made me smile to hear that we are all cat people. :)
Sorry I haven't been on but my laptop decided to go on strike, I guess I will have to have it looked at. It let's me on,then shuts off, then doesn't let me back on for a few days.
Kathi,I hope you have a white Christmas, it must be a beautiful thing to see, to have a white Christmas must be amazing. Maybe one day I will see one.. Walt,I always wanted to see a bald eagle, just watching them on t.v., watching them soar, gives me an idea how they must look like in real life.
Here we can get to the mountains or the ocean within an hour, maybe it's something for me to think about. :).Short road trips. :)
Short trips are nice because they can be spur of the moment outings that brighten your day.
We have had two Bald Eagles hanging around now for almost a week. They are amazing to watch. One was on the beach eating a fish it had grabbed and a beaver walked within about 10 feet of it. The Eagle never stopped eating but it kept an eye on the beaver. So besides the cats I have the wildlife out back and a squirrel that comes and sits on the rail at the back door and lets me hand feed him.
Well, we will have a white Christmas. We have a few inches of snow on the ground now and it's not supposed to get above freezing before then. It's pretty. I took a short trip through the forest to my sister's house yesterday. Yikes! That's when snow isn't so nice. It was a slippery trip (an hour each way). Her house is also our Christmas destination so I hope the roads improve by then.
Walt, you live near the beach?! How nice. I can sit next to one for hours. It's amazing because the waters are so violent and dangerous yet they are so calming. I'm at least 1400 miles from any ocean but I do have a house/cabin on a large lake and I live in a town on Lake Superior so I have some water. After I retire, we plan to move to our lake home to live in the summers and we hope to get a place in Florida for the winter so we'll have both! I'm so looking forward to it.
I hope this season isn't too hard on you, Alice. I wish you peace. You'll be in my thoughts.
Kathi I spent time in Connecticut in the late 60's when I was in the Navy. Up there, snow was no big deal. When it snowed, they plowed. At each intersection that was on an incline, there was a barrel of sand in case you needed it to get moving up the hill. In New Jersey they do a pretty good job of cleaning the roads and salting them. Only if there is ice is it really bad. My brother lives near Atlanta. if they get snow or ice they just close most things down.
I'm not on the beach at the ocean. I live on a tributary (Rancocas Creek) of the Delaware River north of Philadelphia. The creek is about a quarter mile wide where I am. I am able to have a dock with the boat right behind the house. There is boating, fishing, water sking, kayaking and all the usual happenings going on. It is fresh water which is easier on the boats than salt water.
I have been really looking for a FORUM where I could get some advice or just hear from other people in a similar situation. I got caught up in Karen S and Smedley_Butler's openess, honesty and experiences and decided this was an amazing place, by the time I got further on I could see they were gone. I feel so alone and isolated - watching everybody else live their lives in a "normal" world and I am stuck outside the box.
A long story very very short: I am a 46 yr old American woman living with my Danish husband in Copenhagen Denmark. We have been together for 18 yrs and he is 7 yrs older than me. He has had Diabetes for the entire time, type I, but has had no problems. 22 mths ago all of a sudden BOOM! A blood clot, double bypass surgery, a blood clot in the leg, toe amputation, is nearly blind now (can see maybe 15% right now max), he has a depression and we were informed 3 weeks ago that his GFR numbers are real low and he will have to start dialysis within the next 6 months. In and out of the hospital for months and months and I am doing my full time job, (he has not worked in nearly 2 years now), cleaning, buying food, doctor appts, making food, cleaning up, doing his pills, doing all the paperwork, making sure he is feeling loved and taken care of. I am just so burnt out; feel like an empty shell and I cannot believe this is my life and when and how does it end? I know this is my journey, I am trying to do the best I can and I do fail at times, but I am struggling and learning, crawling and getting wiser. I have experienced a strength I did not know existed in me and I feel like the strongest person in the world and at the same time beaten to my knees.
Can anyone give me some wise words or advice as how to learn to take better care of ones self? My sleep is so bad, I eat so irregularly and I want to be able to go to the gym again and be good to myself. How do I find the desire again to be social with other people and be OK with that they have heard the same story for me about my life for the past 22 months? I can feel I have been isolating myself because it is hard when nobody knows what you are going through. How to be better at asking for help.
I wish you all a wonderful day/evening wherever you might be, out there.
I am sorry for your situation. I think you have identified what most of have gone through. you also have realized that you have to take of your own health so that you can continue to be a good care giver. Eating right on a regular basis is important to maintain yourself. Sleep is another area that at times seem no-exitant or at least extremely difficult. Trying to get eating and sleeping sorted out will get the other things more in order.
Be careful of what you consider a failure as a care giver. At first I thoght I had failed if I was 10 minutes late with my wifes medications. I have learned not to be that hard on myself because it brought me down thinking that way. When I was feeling down it made it all that much harder to do the other things that were required of me. I was able to retire to take care of Leslie. It makes it much harder to do these things while you are still working full time. It might be possible for you to get nursing help in the home (I don't know how Denmarks medical system works) or to have friends or family help out so you can go to the gym or take a little break from the constant care.
I hope some of this has helped you see that you are doing a good job of caring for your husband.
Please keep us informed of how things are going. Don't hesitate to ask any questions. This is a small but very caring forum.
My thoughts and prayers are with you.
Merry Christmas to all and may God look down and smile on you.
Thank you so much for taking the time to write me. It meant so much to me to get a response, read your words and wisdom, and be in the same place as people in the same situation. It took me a long time to get here. I know I have been a caregiver for "only" 2 years now, but I am a very stubborn person and thought that I could really do this on my own. (I guess it is about time that I see that this is going to be a major life-lesson for me...) Plus when I read the comments here it was a double-edged sword; I felt like I finally found a place where others knew where I was coming from, at and on my way, but on the other hand it broke my heart to also read the pain, suffering and heartbreak. I, as probably others, are so taxed (mentally, emotionally and physically) and I was worried that I would get more involved than I could handle, blah blah blah. I can see now that I was making excuses for not getting engaged in this forum. So, I did my dive into it and I look forward to having it be something for me as well as others in the same life realm. I hope I can, in time, give back in the way that I feel I have received insight and knowledge here.
Thank you Walt again and thank all the others on this forum for their honesty, caring and involvement here. I look forward to partaking in more comments and until then I wish you (all) a Merry Christmas and prayers to all.
It seems like it takes everyone a long time to give into the idea that maybe I can't do this all by myself. I was extremely lucky with the doctors that treated Leslie. I asked them to be honest and open with all the test results and explain all the options. It was a Orthopedic doctor that discovered Leslie's breast cancer had returned as bone cancer (while she was being treated for a shoulder problem) and it was her Oncologist that sent us to a Cardiac doctor to tell us that she needed a new Aortic valve put into her heart. So she was blessed with good medical care, but I also did research and asked what I thought were important questions. So one of the added "jobs" of a care giver is also a research guru.
It is difficult to read about other peoples problems, but as read each entry I learned something new or else it opened my eyes to my feelings that I thought no one else shared. Hopefully you will have the same thing happen to you and it will make your journey easier.
Please don't hesitate to vent when you feel over loaded. For me just typing in my feeling or frustrations gave me another time to think about them and open my mind a little. There may be times when you think the doctors aren't concentrating enough on your problems and there may be times when your spouse seems to lessen the fight against the problems. I would get frustrated when Leslie wouldn't go for a walk with me (advised by her doctor) , but would walk with someone else that came to visit. I recognized that problem and asked friends to come over and take a walk with Leslie. That got Leslie her exercise made me feel better as a care giver and I was happy that I found a solution to that bump in the road.
I hope everyone here had a nice holiday season and a good New Year's start
Once again, thank you Walt for your words and time, I really appreciate it. I do see how all these posts help, just reading, learning, opening up and taking in the stories/words and advice helps. I am still learning to deal with the isolation and frustration, this one is going to take a while. I have a feeling I am also slightly mourning the loss of what was and what I thought my life with my husband was going to be. At 46 and him at 53, I would never have in my wildest dreams thought this would be how my life would turn into so soon. I have no grasp of what things will be like in 6 months, no one tells me how a general outcome of people in this type of situation forms and what I can expect. I miss love, I miss having a partner, I miss having a more carefree life (just to go on a trip or have an experience out of the apartment), I miss having a husband that can see, I miss having someone having my back. I am frustrated this is my life, I hate feeling egotistical and wondering why this is happening to ME, I hate getting furious at a small thing that just triggers total anger when it shouldn't (can be having an OK day and then something at home happens and I in my head lose it and am totally mad and want to just walk out and not look back. I am envious at my friend's and family's "happy and easy" life with "small" burdens and the ability to not have to think 100 steps ahead and have everything be a major project. I hate the guilt and the emotional roller coaster of my day-to-day life. WOW! Did I vent there or what, I guess I needed to get that out. Funny, I have been to this forum a couple of times during the Christmas holidays and it was quiet and I did not want to write a bunch of negative stuff and be what some call a Debbie Downer. I felt fine logging in today and all this came out. Jeez, it has been really nice to have some days off for the holidays, but it has also been very stressful being here every day and at his beck and call (I want to be there and help, but it was a bit overwhelming for 10 days). I do look forward to getting back to work and feel guilty of leaving him here to be on his own until I get home every day.
On a brighter note, I am really working on changing my mindset and learning to appreciate what I have been capable of doing and what I am still doing to this day, it is an amazing feat and I must learn to be proud of what I do every day and not focus on what still needs to be done - I am in for the marathon and not the 100 yard dash. I am trying to remember to make an effort and stop up every night before I go to sleep and tell myself I doing a great job and I am doing my best. I can glimpse that I have been given a unique opportunity to do something that demands so much on so many levels and right now in my life I know no one going through the same thing on any level. It makes me feel so alone and sad and apart from everyone else, even my family. But I will get through it and be a better person with greater insight, deeper understanding of things, a heightened appreciation for other things and also a wiser person. For that I am grateful. I am no where near that yet, but I can see glimpses of it and now it will in time evolve into more than just a thought. It is all part of the journey....
I wish you all a Happy New Year and may it be filled with happiness and peace
It sounds to me that you have identified most if not all the major problems we have as caregivers. The idea that this is a marathon is important. Just knowing that all these things won't magically disappear tomorrow or next week allows you to set a pace to do the things that are necessary.
You writing down your feelings and frustrations hopefully bring them to your conscious mind and allows you to deal with them on a different level. Just thinking about these things and not opening up and talking about them can cause more frustration. Let me say this, the way you wrote about your problems, feelings and frustrations was really very eliquent and flowing. I always have trouble putting my feelings on paper. It also shows that you are dedicated and very caring.
I know this is a caregiver forum and it has opened my eyes to many things, but I hope that you are also looking at other forums that can deal with the specific problems your husband is dealing with. I have never had to deal with loss of sight, so I don't know what it is like to deal with that problem, or the frustrations particular to that problem.
Thanks again for "venting". It shows other people that read this forum many things that caregivers go through.
To all, my thoughts and prayers are with you and hope that the new year brings hope and peace.
I got very happy when I saw there there was already a posting after my posting and that it was from you! Thank you and thank you for your words. I will look into the other forums also, I still have not even spent enough time on this one to know the ropes entirely. Not many on this specific forum and I wonder if others will come back? Maybe just the holidays.
But this posting is a specific question for you; you did not write anything as to how your holidays went. How did your holidays go? Did you have any nice experiences that brought smiles or laughter? Did you spend it with family? Do you have any nice experiences planned for 2016? How are you doing? What are you up to? May I ask? I was just wondering because you mentioned nothing of yourself and what is up in your neck of the woods (so to speak).
I wish you a wonderful day, it is 8 pm Copenhagen time and I have to get ready for a new work week starting tomorrow; mixed feelings about that (read: wouldn't mind winning the Lottery big time and re-arranging my life on certain levels - yeah, ok, we can always dream, right?).
I had a nice quiet Christmas. We spent the part of the day with Leslie's family which included a nice family dinner. The nieces and nephews brought smiles to everyone's faces. My family is scattered. My two boys (45 & 47) are in California and my brother lives in Georgia while Leslie and I are in New Jersey. No speciffic plans for 2016 (Wow that's the first time I wrote that date). I might get out to California to visit the "kids". Leslie and I are both retired so the winter months are a little slower than the summertime. I try to find some projects to do around the house. It seems like a good time to redo a half bath. I've been helping a neighbor get ready to move and I know the woman (a friend) that will be moving in, so I will probably help out there. We go boating in the summertime.
I am a retired electrician that worked for a public utility. I enjoy working on boats, motors and cars, as well as some home remodeling projects.
Well, that's pretty much about me. I hope you are holding up ok through everthing you and your husband are going through. Maybe this year will bring more help to lighten your what you have to do.
Yes, it was the busy holiday season that kept me away for a couple of weeks.
Michelle, your writings have taken me right back to the pain and frustration of the beginning of my husband's chronic illmess. I was 46 when he suddenly became critically ill and unable to work. We, too, did not know what his prognosis was (and we still do not). Neither did we know what brought on this sudden kidney failure and septicemia so we worried all the time that the doctors were about to discover what dreaded thing was about to do him in. I, too, have worked full time since then (now 15 years on). It's really frustrating. On the one hand, I sometimes feel that I'm not a good caregiver because I'm at work all the time and, often, when I get home, I'm too tired to be good at it. This is especially true as I get older (61 now). On the other hand I have felt like caregiving is all that I do and all that I'm worth. My work has provided me an alternative raison d'etre and I have learned to be grateful for it. I often feel lonely and isolated as you do.
But, all of those feelings are so much less intense now with time. We no longer care what brought on his illness and stopped obsessing over what was going to bring on the end. We know now that our job is to live the best life we can one day at a time. My husband has changed a great deal since then. He's managed to find gratitude and humor again. He is much less fearful and more able to care for himself. His attitude has saved me. Also, after the first year, I finally spoke to a doctor and got some help for myself. That changed everything. I began taking anit-depressents which I still take and always will. They have taken the edge off my anxiety and hopelessness just enough for me to get on with my life without the constant feeling that the world was about to crash down on me. I'm no pill-popper and I'm not recommending this for you or anyone else. I DO, however, recommend that you talk to a professional about your own stress, anxiety frustration, and fear. It can't hurt.
This message is meant to be hopeful. Time really does help and you've already put in the worst time (the first couple of years). It is my hope for you that things will only get better, not worse, from here. May you and your husband learn to be happy again, one day at a time. Nothing about this journey is easy but it can be rewarding.
That was very well said, giving a great amount of insight to the feelings and frustrations of a care giver. It also shows how important it is for the care giver to remain healthy both physically and mentally. Hopefully anybody that reads what you wrote will understand that they are not alone in their feeling. Thank you.
You both have no idea how wonderful it is to read your posts and words. I am so grateful and I thank you very much. I hope one day I can pay it forward and help someone else like you both have helped me. Your posts have been like this shining lifeline in the dark. It is not all darkness and dispair, and I do not go around out of it, but I have felt so alone and have not conversed with others going through caregiver issues. I think what knocks me off my feet is the constant emotional roller coaster feeling. Sometimes I feel like I have had an OK day then a piece of bad news can knock me down. I am still standing and not crying, but inside it is all turmoil, unease, anger, sadness or whatever. And it can be a totally ridiculous thing that happens. Sometimes I just need to cry and get it out and I do this alone. My husband is in such a fragile (depressed and not that healthy state right now) and his world is so overwhelming for him that he has not been able to give me strength or the feeling of being protected in years. I am the ever strong one and his source of "Everything will be OK as long as she is OK by my side". It is all such a big responsibility. I think once I get through and accept 100% that this is my life and my path and no, it is nothing what I wanted or imagined or hoped for, but I am here and doing it, then I will tread a little faster. I have started seeing a psychologist and we will see how that goes.
Doing this whole thing really puts me to the task on many levels. But I do realize now more than ever that I have to take care of myself better. So I am eating better, have started a task of taking the stairs ( I live on the 5th floor) instead of the elevator (one week for each level until I get to the fifth floor), make sure I make it to the health club, longer walks with the dog (I walk her everyday for 2 x 15-20 min), I do already bike back and forth to work (only 2,5 miles each way), but I need to lose weight and get stronger, so that is my long-term goal. I feel really motivated. It feels good, like my body and mind crave it.
I always laugh a little when I am about to send my post, it is like my fingers get a life of their own and just write and write, a lot of pent up stuff here.
Bottom line is gratefulness. I found this place, and so thankful that people I do not know would take the time to write me and help in more ways than one. I could not find anything in Denmark and being an American makes it easy enough to be here, it does not matter where I am, all of us being online. PS: Walt, you asked: I am a Translator and Interpreter. I received my MA from Copenhagen Business School. I speak English, Danish and Spanish (fluent) and a little French and German ( no where near fluent, but I would survive getting dropped in the country). I worked as a Translator for several years, but got so bored with sitting 8,5 hours a day in front of a computer and not interacting with anybody. I started applying for administrative jobs where I could use my language skills also. I now work at an international singing institute for professional and semi-professional adult singers.
I hope you both and other readers have a wonderful week, maybe with some nice things planned or time off. How are things where you are and do any of you see a new year as a new page for new hope, new routines, and thinking/understanding? I do.
You really got me when you said you always have to be the strong one and "I'll be OK as long as she's by my side". It does feel like an overwhelming responsibility. Before Dennis got ill, we had decided that I would retire at 50 to stay home with our (then) 10-year-old daughter. Finally, someone would have my back (financially). That had never happened to me in my life. I was always the primary earner. When that possibility was stolen from me (yes, that's how it felt), I was SO angry and resentful. Not only that, but HE got to stay home with our daughter. I know how selfish that sounds and I sincerely would not trade places with my husband for anything, but it was how I felt at the time.
Gradually, I came to realize that I could handle the responsibility and that many people could not. Fortunately, we could live on my salary and I was grateful that our daugher was out of day care (she was only 6 when he becane ill). When I read what you write, it seems so obvious to me that YOU are even more capable. You don't need to TRY to take on this responsibility, you already have! Try to relax about that, you do have what you need to do what needs to be done. This is a great area for one day at a time. You can "be his everything" today. There's no telling about tomorrow and no use in speculating about it.
Of course, your husband is responsible for his own happiness, peace, and joy. At the moment, he's struggling and you're there for him. I suppose that's what marriage is, with or without illness. I hope he can get some help for his depression. Dennis went through that as well and it was positively the worst year of this whole adventure. We've learned to talk honestly about our feelings, especially the scary ones, and it has made us even closer. That took some time, though. I thought had to deal with some of my stuff (resentment) without involving him so I relied on friends and close family. But I had to dump the resentment tank. I can't live like that.
Dennis and I have a short adventure planned in February. We're going to Florida for a few days. It will be a huge relief to get out of the below-zero cold for a while. He can do these well-planned and short trips now. At first he was afraid to leave home because of all of this "equipment" and dependence on a clean and predictable environment. I am going to Great Britain with our daughter in June to celebrate her graduation from college. He won't be able to go with us, of course, but he is happy that we're going.
It would be so nice if we could get the information and feelings that you two have written about to every care giver out there. Both of you let your feelings flow onto the page and open yourselves to the "hard facts of life". It would be an inspiration to anyone who is going through any of these problems. I'm more of a technical writer but both of you just open up your hearts.
THANK YOU FOR THAT.
Kathi
It's great that you and Dennis will be going to Florida and even better that you feel at ease going to Great Britain with your daughter.
Michele
I have to agree with you that sitting behind a desk all day would be boring. Being retired the interaction with the people I worked with is the thing I miss most. The way you are planning your exercise routine sounds very sensible and well thought out.
You're not just a technical writer. You have helped me a whole lot and I thank YOU. And I'm grateful to Michelle for expressing her feelings so fearlessly. It makes it easier for the rest of us.
I am really glad that I could help. Sometimes friends and family ask how things are going but don't really understand fully how things are, even when you try to explain it to them. This isn't taking anything away from them, they just don't "REALLY" understand. To have other people that are experiencing many of the same feeling and frustrations and all of the other things that a care giver has to deal with is very helpful. I am glad I found this forum and have had a chance to interact with everyone.
Hello to Walt and Kathi and if anyone else i out there reading this,
Do you want to hear a secret? My husband got picked up by his brother yesterday afternoon while I was at work and he spent the evening with him and his family. I had the evening off!!! It was so wonderful, I actually went around smiling and did what I wanted for some hours before they came back for drop off. It was so nice to have some alone time and not be at work or doing things to get his stuff together. The two previous nights he has been very restless (I think he is getting to the point now where the dialysis is going to be put into action by the doctors - he eats so little, has nausea, throws up and just sits and rests all the time, dozing off, feels like he is 95 yrs old) so he has slept in another room. I cannot remember when I have last gotten over 5 hrs a night, felt like a miracle. Sleep should never be overrated, that is for sure.
Anyway, the secret.... I felt like I had an entire day off, albeit a few hrs. So I had decided I would wait until today to see if any of you had been on the forum. If I looked I would read and then most likely respond, I wanted to make sure I spent one evening with my eyes away from the computer, spend all day at work at the computer and then most evenings helping Soren do his mails, doctor things etc etc. Well, I checked anyway right before I went to sleep last night and there were messages, it was like a Christmas! I did not read what had been written until this morning right now, I made myself wait til today like opening a Christmas present. But just knowing that there was something to read (no matter what it was gave me much happiness). Isn't that funny?
Kathi, I so understand the anger and resentment, it is such a big issue and I suppose no one (caregivers) can wiggle around that one. Either you get through it or you don't, I can't imagine it being something you kind of get through. I am so glad to hear that you finally could get through it and let it go, gives me hope that one day I will too. What a huge life lesson. I have no idea how you did all that with a small child and a full-time job at the time, that amazes me. Hands down, total respect for you. At this stage in my life and the difficulties I am going through I am so thankful that I did not have a child (we tried and could not, he cannot have kids and now I can see probably based on his sickness). I was so sad about that then, but now I would be even sadder having to also deal with constantly not feeling like an inadequate mother becuase of dealing with a sick husband, just being so exhausted and being a good mother. How did you cope?
I am happy to hear that your relationship has evolved and your husband has a different outlook on life. I wonder if my husband will ever get there.... we will see. How is Leslie on this point, Walt? Does she cope OK with her situation? Stupid question, but I hope you know what I mean, is she at a point of acceptance and does she try to get the best out of things? Is she depressed (like my husband) or does she have a better mindset? One thing I have noticed about my husband and I (difference-wise) is that I have really found out about our personalities - I am a total fighter and plow through things head-first and act and react to situations. He is very much the opposite. Of course I do have to take into consideration the huge difference that I am not the one coping with all his ailings, I am the by-stander, big difference. But I am amazed at how different we are on that point.
Walt - sounds like a nice plan you have of getting out to your kids in CA. Where in CA? I have lived in San Diego (Air Force Brat) and then in NorCal - a couple hours north of San Francisco. I hope you get to do that. Do you have a support system to take care of Leslie while you are gone? Can she go on small trips with you at all? Kathi - congratulations on your daughter's upcoming graduation. You must be so proud! Sounds like a wonderful upcoming trip to the UK. You are going to have a wonderful time. Where will you go? Will you visit London, have you been to the UK before? Your upcoming trip to Florida sounds wonderful, a little bit of envy here - in the good way :-). I was supposed to go to Rome for 4 days from Jan 20 and on to visit my best friend who lives in Albuquerque visiting her daughter in Europe (the hotel was paid for along with the plane ticket), but the situation is so bad right now, plus Soren just got his eyes operated on again so he cannot see anything, that it is just not an option. I had to cancel :-( We had planned to go to the States this summer, but with the whole dialysis thing about to get arranged, that will not be an option. So I am going with my friend Jane to London for 5 days in mid-May (come rain or shine I am going on that trip).
Walt, your words and way of expressing yourself is fantastic, I am behind Kathi on this one: you do not write in a technical manner at all. You have helped me so much and I love reading what you have to say. I think maybe because I write SO much that you think your writings are technical, probably a girl thing, I am very expressive and cannot keep it short (I do wich I could though many a times). Your writings to me when I first got on the forum will always be my light shining through the total darkness, for that I am ever so grateful and I do hope you continue to write when you get the chance, I always look so much forward to reading your posts. The issue you write about having family and friends not really getting it, I sooo get that, I spent so much time trying to get people to understand what was going on and how it is, but it was a losing battle. It is never going to happen, I am learning to accept that, probably because I have this forum to "lean on". Thank you both for that.
I had some questions for you both, but I think I will wait until next time because this posting became soooo long, I don't want to exhaust you both just having to read this and it can wait til next time. I apologize for any typos or errors in my postings, I never read though my stuff unless it is official or work-related. It is a very bad and lazy habit, but I always end up being out of time (I should have started work 15 min ago, so I have to get going), so for that my apologies ahead of time.
Have a wonderful day all and I look forward to conversing again.
Greetings from wintry and slight snow in Copenhagen
Walt, Yes, I too am curious about how Leslie is coping. How is she doing?
Michelle, I write too much as well. There are a lot of pent-up feelings and this forum is really the first time I've felt free to express them. They pour out of my fingertips.
Soren's illness sounds dreadful. My husband also deals with the constant vomiting (kidney failure will do that to you) but at least he can see. He's down to 128 pounds now (from 180) but that has taken years. I don't know how he copes with it as well as he does but I do know that our daughter has a lot to do with it (and his little dog, Jude). Emily has given him a reason to get up and get dressed every morning (to take her to school) and a goal every afternoon (to get it together enough to pick her up). She's crazy about her dad. When she was little, they would spend afternoons plotting what to do to Mommy when she got home from work. He helped her with homework. He listened. They are very close. And she has brought me untold joy! I'm not sure that Dennis and I would have done as well as we have without her in our lives. I got to take her skiing (snowboarding for her), to movies, to see Grandma, etc. It got me out of the house and out of myself - every day.
She has grown up to be healthy and happy. She's very funny, like Dad. We will miss her when she moves away but we're also looking forward to it as much as any parents. Kids are a lot of work. But I have to say that she has only made our lives easier and more rewarding. I'm so sorry that you were unable to have children. I didn't have Emily until I was 40 so I can appreciate the ache.
I have been to England and Scotland a couple of times before (lived there for a few months when I was 22). We plan to go to London, York, the Cotswolds, Belfast, and Dublin. Skipping Stonehenge, Stratford-on-Avon, the channel, and lots of other stuff this time because we only have a few weeks. Dennis and I spent our honeymoon in the Lake District and Scotland.
Enjoy your trip to London in May! Try hard not to cancel it. Perhaps your husband's brother can help out while you're gone.
Sleep is always important to a care giver (and your patient, sorry this sounds too clinical) and it does make things easier, it makes your mind clearer and hopefully helps you relax at least a little bit. That break you got when Soren was with his brother does make a world of difference. It is so nice to have family and friends spend time with your spouse. It also gives them some insight to what you face everyday. It is ashame that you won't be able to go to Rome later in the month.
Kathi
I'm glad that Emily has been such a big help in such a difficult situation. Too many times a child does not understand what is going on and through no fault of their own becomes resentful of things.
Leslie is coping very well with the whole situation. 13 years ago when she got breast cancer we were devastated. She went through a lumpectomy and the removal of 7 lymph nodes. The Oncologist saw a lump in her pelvis that the Gynocologist had missed. That was removed (benign), plus a hysterectomy. Then the full radiation treatments Loss of hair) which she handled well. Radiation was 5 times a week for about six weeks. She was depressed at times but overall was good. Then 10 years later the breast cancer came back as bone cancer caused her hip to break and they inserted a rod in her hip. Her Chemo is less intense with the bone cancer and the radiation treatments were daily for only about 3 or 4 weeks. When she found out that she needed heart surgery to have the Aortic valve replaced (most likely caused by the radiation with the breast cancer) that upset her, but she was strong and I was amazed how good her attitude was. We just got home from a fitness supplier and we bought a Cardio-Strider. This is very much like one of the pieces of equipment she used at Cardio Rehab. I was impressed with her making the decision to buy it (sometimes things like this takes weeks). In a few days we will have the equipment and hopefully she (and I ) will start a program that will build our strength and endurance. Maybe we will both lose a little bit of the weight we have put on through the inactivity. Overall Leslie in a good frame of mind and overall decent health. She can travel, she is driving more and she is become more active around the house. I no longer have to help her shower and dry off or do most of the cooking (okay some cooking and running out for take out stuff) or drive her everywhere. An important thing to me is that she recognizes what I have helped her with over the years and she tells me she appreciates. That does mean the world to me.
Wow, that was a lot for me. By the way One of my boys lives in San Diego and the other one is abnorth of there in Menifee.
Wow! I had no idea what you'd been through and for so long. I'm glad that Leslie is doing well and participating in life. It's nice that you're both on an exercise binge together. It's always easier to break bad habits when there's someone else to commiserate with :-)
I never imagined Emily as resentful. I think from her point of view, she had a great childhood. She has 2 parents - one at home. We have been able to provide everything she needs and she is well loved. She's very close to both of us. When she was really young, she was not aware of how ill her dad was. She knows now and we don't hide anything from her. It's funny but I don't feel the least bit sorry for her nor for myself. She has a great daddy who is attentive to her. Her parents are happily married and there is a lot of joy in our house. I don't think she'd trade us for healthier or younger parents. I suppose you'd have to ask her.
Things are not now and never were perfect, of course. Or easy. Dennis and Emily argue a lot. All normal family stuff, I think. What makes us different is that we live with a level of anxiety about Dennis' illness. Neither Em nor I can imagine life without him. We talk about it once in a while but mostly we stick with one day at a time. Fifteen good years have passed that way. We're grateful for every one (well, OK, the first couple of years we simply endured).
When he has been ill every day for many weeks (fever, vomiting, weak, in a lot of pain), he tells me that he wants the pain to end and that he's ready to go. I have learned to accept that and to sympathize. I'm sure I'd feel the same way. He has a DNR (do not resusitate) order which I hope I can honor if I'm ever faced with such a dreadful decision. But he's not focused on that. He's focused on life. Emily is aware of the DNR but she is a little less accepting of it. I think, like most young people, she sees it as a long way off, or maybe never. Bless her.
A nice Saturday to the both of you. I hope your week ended on a positive note. Mine was good enough, I got a little praise from my psychologist on Thursday, which was nice. She is a bit of a hard-noser which fits perfect with me for our sessions, but I was very happy to hear the unexpected praise. She said I was very resourceful and good at trying to better my situation and understand it as well, I am good at coping in extreme situations and take a fight stance and not a run-away stance. I do know all this, but it is good to hear from a relative stranger. So that will go a while with me which is nice.
Sometimes I wonder if we are the only ones out there on this forum? Do you both ever go to the other topics and reply there? I guess I am too grateful and satisfied on this forum string here so I do not need to go to another spot. Do any of you use/participate on other forums out there online? Do you get support, inspiration or help other places? I just bought (recommended by KarenS from this forum a while back: The Caregiving Wife's Handbook: Caring for Your Seriously Ill Husband, Caring for Yourself - it will arrive sometime next week. I am glad to hear that it is not a specific "for women only" book and got fantastic recommendations on Amazon. Have either of you read it? I am also looking forward to what I have read the immense amount of "matter-of-fact-ness" about it, and how to deal with certain situations. Please let me know if you have read it and what your opinion is on the book. On another note, I am so glad to read that we all get something nice out of this, I know I do and opening up never hurt. So nice to have others in the same caregiver boat around and to hear how they are coping.
I had a couple of questions for you when you both get the time: how did/do you deal with frustration regarding family members and their lack of helping (if any of you have experienced this). I am a bit taken aback by how little my husband's family offers to help or do anything. I am well aware of the fact that they have no way of fathoming the depth and severity of it all, but I am quite angered that no one offers to do anything, and this is the immediate family. I do not say anything, but am quite frustrated about it.
I have started talking to Soren about the necessity to downsize (our apartment) in the future. We have three bedrooms (one is his music studio - he is a composer) and the other one is our bedroom and the other one we hardly use for guests. I think if we could save 300 dollars a month and get a 2 bedroom, that would be smart. He has not worked in 2 years now and I do not know if he will again. Have any of you needed to do this and should I mention that I also worry that if he died I would not be able to stay there as a factor of needing to move? It is all such a delicate subject. I am all for being honest, but I do not want to be tactless and putting more on his plate as is. But it is a factor for me. I worry alot about my future, my small pension so far, expenses and how I will cope financially in the future.
Another question, and this might be too personal and I totally respect if no one answers this. My husband is really feeling the effects of his failing kidneys. He is nauseated alot, eats so little, sleeps so much and tired all the time. (We are waiting for the Nephrology Dept to call us back so we can make an appt to get the blood tests we know are going to say "time for dialysis" and start that whole phase). During the night he is up and about alot and it wakes me often. We sleep so bad together now, like each our energies wake each other all the time. Which is no good for me as I go to work every day and have to make the daily things work out - shopping, cleaning, pay the bills, make food, drive the car etc etc. Anyway, is it normal that people in these situations (chronically ill and spouse) start sleeping in separate rooms? To make the next day doable? I feel like as the days go by, we are losing more and more of husband and wife and more caregiver and patient relationship and it is so hard. How to tackle this?
How do you deal with sleep problems if you have any? I am so exhausted every day that I have no problem falling asleep, but wake up for 1-2 hours during the middle of the night where my mind goes through a myriad of different scenarios, frustrations, fear, desperation, and I think I am in a bit of mourning too of my life, is this normal or does it ease up after some time? Sometimes I feel like that if a stranger came up to me and gave me a hug and told me it was going to be all right and everything was OK, I think I would disintegrate into a million pieces and fall apart. We humans have such a strength in us, I am amazed at what we can deal with and survive in many situations.
Please don't feel obligated to comment on all points, especially if any make you feel uncomfortable. Please feel free to share anything with me as well.
Those were nice compliments you got from the phsycologist. Be resourceful and not running away from the situation is a great praise.
Forums....it does seem like a very small forum. Some people seem to pop in for one or two entries and then disappear. There might be people reading then but not participating. I never joined a forum about breast or bone cancer, but I have looked at sites and read many of the entries. They seemed to be purely about the medical aspect (which is helpful) but not about how the person was actually doing. Here we not only talk about the medical situations our spouses have, we also talk about the feelings and pressures that both the spouse and care giver go through. I think we all go after the best medical assistance that we can get, but don't open up even to our families and close friends about the "overall" problems we go through. This forum seems to "allow" that or even encourages that. I am grateful for that.
I'll have to look into the book that KarenS suggested.
The part of the families and friends not taking a bigger roll seems to be a "normal" response. I don't know if it is that they are in some form of denial and if they had a bigger roll to play they would see how things really are. In my case I know Leslie's family cares, but they don't make much of an effort to even visit. We see them mostly at family gathering or when Lesle and I are helping her sister and they visit her. It would be helpful at times to have someone help with a doctor visit or just spend time visiting. Even now when Leslie is doing very well, if I'm in the other room and hear her sneeze or cough or hear an unusual noise I check on her. That hasn't stopped since the first time she needed help. She always says "I'm okay" but I still have to check. So if people came to visit alittle more it would ease some of that.
The downsizing dilemma. I am at a loss of how you might present the downsizing to Soren. The money side is sensible and logical, but the idea to Soren that he would be giving up his music studio is difficult unless you could convince him that in a two bedroom apartment the second bedroom could serve both as a studio and an as needed guest room. That is a tough situation. If it ends up where it is definitely a money situation than you would have to do it.
The bed question. At different times it was feasible for Leslie and I to sleep in the same bed. The lastest time is when she had the heart surgery and if I moved the bed it would hurt her. The first week after the surgery, I slept in my office chair next to bed becuse she needed help getting in and out of bed. It really wasn't too bad slepping that way. Of course now I fall asleep sitting in the chair at the computer. I moved from the chair to the couch and made sure she had a bell or something to wake me up if needed. So now I'm back in the bed and my restlessness awakens her at times and she wakes me up occassionally. So after al that, I quess what I am trying to say is...you both need to sleep. Depending on how much care your spouse needs during the night would (for me) determine where I slept. I hope that helps a little.
Sleep problems. My mind goes a mile a minute most of the time. This is true when I am awake or trying to sleep. At night I end up looking at the clock way to many times. One of the ways some people handle this problem is through meditaion. I don't mean sitting in a full Lotus position chanting, I mean just focusing on something more pleasant and relaxing while you are laying in bed. From the "counting sheep" to something like picturing the ocean waves breaking softly on the shore. I use self hypnosis. Just a light stage. I practice bowling in my mind if my brain is running all over the place. I just start bowling in my mind and hopefully before I finish the first game, I have actually fallen asleep.
A HUG. After reading the things that you write I don't think if a stranger came up to and gave you a hug you would fall to pieces. I think you are a very strong person. If there were a way to send one over the internet I would send one to everyone out there that needed one.
I am so glad to read that Leslie is doing good, that must be a source of relief to you. It is so important. It must be so nice that she can get around and even drive. I wish Soren was able to get around too, it must really boost their self-esteem and sense of independence also.
Thank you for all your replies and latest input. Yes, I talked to Soren about the downsizing and that the 2nd bedroom would be his work space only and that future guests would have to stay at a hotel, that is just the way it is. I don't want him to feel he is being pushed out of his space and especially his work space. He agreed to that and we are making a list of what we want and what can work with (both money-wise and demand-wise). So that was positive.
I can see that the (lack of) family help is a usual occurance, unfortunately. I am starting to get a grip on the fact that unless you have tried being a care giver before, you have no idea how hard and demanding it is, it is just not imagineable. Very few step to help and I have to just get past that frustration.
I do actually meditate in bed right before I go to sleep and listen to a 25 minute session of a person talking that really helps me. I forget to do it, and I don't feel like doing it every night, but I need to do it more. It helps and I don't think I will ever be not having a mind going a 100 mph all the time while this is going on.
We are still on standby with the dialysis start up and waiting for the doctor call in. We need to get his latest blood tests taken and see where he is. But the poor guy is definately marked by it. He is so tired all the time, eats so little and has a lot of nausea. He falls asleep all the time just sitting on the couch. Very hard to watch as a loved one deteriorates in front of you and there is nothing you can do, it is going to take its course. I am starting to become aware of the changes that are taking place within me about how I deal with the situation and my understanding of this whole ordeal. It does not get easier I would say, but I have learned after 2 years not to be on HIGH-ALERT all the time. I am ever vigilant with everything, but not feeling the stress 100% of the time and MAX level. It spikes now, but my head will always be working.
Walt, anything nice planned for the week? What is the weather like over in your neck of the woods? Here winter has arrived and it is cold, will be even colder in the middle of the week. I don't mind, but the freezing of my bike gears on Gear 2 (of 6) was not fun for 4 days. I pedalled in 2nd grear because of the frost and that is hard in such a low gear. So my legs were on fire by the time I got to work. Hard to bike in a cold wind with an evil wind chill factor also. But good exercise.
Kathi, I also hope you are doing well and coping, my thoughts go out to you too.
Hello. Sorry it has taken so long to respond. I don't do anything on weekends that doesn't need to be done, especially in the winter. I feel guilty about that, of course.
I have not read the book you and Karen mentioned. I'll have to give it a try.
Since kidney failure is also Dennis' primary illness (he also has COPD and a myriad of other conditions related to kidney failure), I can relate to Soren's state. Dennis must sleep at least 14 hours a day and vomiting is a constant problem. Dennis has managed to stay off of dialysis so far because of his outstanding nephrology care. But there are consequences, of course. Some people feel much better on dialysis, some don't. Perhaps Soren will find some relief in it. It might relieve the nausea anyway.
We have moved twice so far as a consequence of this. First, we moved to a much less expensive house which we loved very much (it's 100 years old). But it had 2 stories and Dennis often did not make it upstairs to the bedrooms for weeks at a time. And it was still too big. We moved again into a house with a main floor bedroom and bath. It's tiny but life is easier here. We are moving again to what was once our vacation home (on a lake). It's one level and very small but it lets Dennis fish and get out in the boat, which he loves. It's a long way from medical care, though. We can't move there until I retire. At the same time, we'll get a small place in Florida where we'll live in the winter. Each of these moves has made things easier. Financially, it simply had to be done. The only thing I'd recommend is to try to make the actual physical move as transparent to Soren as possible. It's extremely stressful and a lot of work to move. I used professionals to move us even though that cost money. It was worth it to us. And, of course, I dealt with all of the address changing stuff and made sure that he'd have cable TV and Internet working in the new house as soon as we arrived. The last thing out of the old house was his "nest", as we call it - his sofa with all of his things and the dog's blankets and stuff and that was the first thing moved into the new place.
Yes, Walt if correct, we need sleep. There have been times when we have slept separately for long periods and it still happens a couple of times a week. In our case, I go to bed early but he is often up half the night or even all night so he sleeps fitfully on the couch. After I leave in the morning, he'll sleep 6 or 7 hours in the bed, if he can. Yes, I have mourned the loss of regular intimacy but I try to concentrate on the moments we do share. I've never felt closer to him. There are many forms of intimacy. There can't be much that's more intimate than sharing this experience.
Sometimes his sleep schedule is so weird that he is up all night, sleeps part of the morning, and then falls asleep again when I get home from work. I hate that. I can't talk to him at all during those times - from my point of view, he's always asleep. We always end up having a "discussion" when it gets to that point and then he'll adjust his sleep schedule - turn off the TV at 10:00 and go to bed no matter how he feels. That lasts for a while and then it slips away again. C'est la vie.
I'm so glad to hear that you have a good phsychologist. Her compliment is well-founded. Hang in there.
My family is also pretty distant about this. They always ask how he is, etc., and make sympathetic noises but I think that Walt is right, they just can't take in the ratty details. They are sometimes distinctly UN-helpful and say dumb things. But I know they love us both. I think that denial is how they have chosen to cope. I know I acted in much the same way when my mother's husband became really ill. I called a lot, but I really didn't help with caretaking. I think they're reaction is normal and I love them all as much as I did before Dennis became ill.
The squirrel-cage thinking for me, at least, did get better after the first couple of years. It doesn't happen to me often any more. I can't really say why. Acceptance has something to do with it and knowing that no amount of it will help or change anything.
It sounds like both of you have given the moving aspect a lot of thought. Michelle, the wayyou ae handling it with making the 2nd bedroom his work sounds like the best possible solution. Kathi, your'e idea of getting to the lake after you retire is great. I have been lucky without having to move. I have a small 3 bedroom rancher on the water that we bought in 1976. It was crowded after I got custody of my two boys from my first marriage when they were 7&8 years old. So everything (except washer and dryer) is on one floor. I haven't let Leslie go down to the basement in years because ever once in awhile she will get dizzy. So I ocassionally sneak the dark clothes in with the whites if it a small enough load. If need be later I will move them upstair. We never had a garage here, so I went (as a hobby) from working on cars to working on boats and motors.
The sleeping situations can cause frustration and tension. Right now my situation is "normal" with us both using the bed, but occasionally I end up somewhere else so Leslie can be more comfortable. She does doze off at times during the day or evening, but we a on a pretty regular routine. It does help overall.
I don't know what to suggest when it comes to the fact that the family doesn't participate more. It sounds like it is a common thread that we all have to deal with. I guess we have to do the best we can and hope they will eventually have an awareness of the total situation.
The weather here in New Jersey has been reasonable for winter. Only a few nights the water I leave outside for the cats (they are inside outside cats that stay in at night) was frozen solid. We just had a couple days of rain which caused flooding with the water coming about half way around the house. No damage just a little clean up.
Kathi, don't feel guilty for relaxing a little on weekends.
Michelle, you will have to keep those gears moving on the bike.
Our daughter has been sick for most of her winter break. I made her go to the doctor yesterday and she has pneumonia. They gave her antibiotics in case it's bacterial and told her to come back on Friday if she's not better. I'm sure she will be OK. But you both know what really worries me. If Dennis gets this illness it will not be good. That's just another thing that goes on in a home with a sick person. Dennis has had pneumonia and flu shots so he probably won't contract it. From my keyboard to God's ears.
She tries to stay away from him when she's sick but they are both home all day together. Dennis does seem to have caught the cold she had (that started this). With his COPD, the coughing is terrible but I don't think he has pneumonia. Crossing our fingers.
Walt, we, too, have had a very mild winter until this week. It hasn't been above zero for several days now but we're supposed to get a degree today (yes, just one degree but it's above zero). However, the wind chill is -35 so it's still really cold. We Minnesotans are supposed to be tough but I'm getting tired of dealing with cold.
Our daughter still lives with us. She goes to college just a few miles from where we live. She moved out for a year but she's back now. I think that she's afraid to leave Daddy. I don't think she's conscious of it, though. She just knows it's cheaper and she has her own comfortable space here. She has some anxiety issues (fear of flying, trains, crowds) but they have not stopped her from doing anything so far. I think that her anxiety may be related to her father's illness and unknown prognosis. She is very strong, though. I can hardly wait to see what she does with her life once she's graduated and on her own.
It always is worrisome when someone immune system is compromised and you have to protect them from "normal" things. It makes it that much more difficult to get family and friends invovled. I've been asked if it was alright to visit Leslie, we were afraid we might unknowingly cuase her some type of illness. You do have to be careful.
Watching your children grow and become an adult and make good choices in life and careers can be very satisfying my older son went to the University of California San Diego and now works there as a computer engineer. My younger son is a charter plane pilot and travels all over the world. I couldn't be prouder to say they are my sons.
We had our first dusting of snow last night. I guess our winter really has started.
Greetings to you both from the cold and far reaches of Scandinavia. It has been very cold here too! Winter has arrived last week and this morning I biked to work in a slightly driving snow. Not a blizzard, but felt like small pins on my face because of the wind chill factor. But alas, I made it my face was all red but alive (felt like I had an involuntary face lift :-) ) So there are a few inches on the ground outside. The cold cold streak is supposed to last throughout the weekend. Walt, you think I would have learned last time to get those gears done, but nope, it got cold outside again where my bike was and the gears got locked in first gear this time(!), I call that divine punishment for not heeding and listening to the weather report. ha ha. So I brought my bike in the elevator home last night and got it thawed out. But I could not bring it into my office this morning and outside it sits. I did remember to put it into 5th gear, so I can go down two, hopefully, but at least not bike in first for 3 miles.
I am sorry to hear that your daughter is sick, Kathi. I hope she gets over it quickly and that Dennis does not catch it. I send my fingers writing on keyboard to the heavens above too. There is always such a fine line when there is sickness around and then everybody is on their tippy-toes and doing their best to keep it under control. I hope also that you do not get it. I have not been sick since Spring last year (with food poisening). I hardly ever get sick but when I do, I go down hard.
Kathi, I am starting today with my husband and for the next three Thursdays (of 3 hours each) a course called (translated) Kidney School for those patients who will start on dialysis soon and their caregiver or spouse (or like me under one hat). So we all get the low-done on what there are of possibilites and how it will affect us etc etc. You have written that your husband is not on dialysis because of a good Nephrology team he has behind him. I might sound very very naive, for this I apologize, but why is he not on dialysis if he has so much nausea and tiredness and loses weight - is his GFR numbers moderate or low? Would that not help a little (as you write for most)? Are there certain factors that determine if he should or should not do dialysis? If you do not want to answer, that is totally OK. I am just wondering if there are other factors we should take into consideration as to NOT start dialysis.
I have been extremely busy lately getting everything done around the house for Soren and my own work and my own obligations. I can feel that even though I am so busy and still under an extreme amount of stress with everything I feel better in my head. I can feel that I am not on HIGH ALERT max % of the time. I am coping better with it all, even though it is not getting easier. I have eased up on my own control issues and tried not to fight it all so much. I attribute a lot of it to being able to talk to you all on this forum. For that I would like to thank you both very much. This forum has been a great sense of relief for me and I am grateful. Thank you for your words and insight - just logging on and being there.
Have a great wintry day both of you, I hear you on the coldness, I don't mind it, it is just hard to bike back and forth to work with a hard wind in the face.
Emily seems much better today. Whew! She went back to school yesterday and did just fine. She was tired but happy. Dennis does not seem any worse so I think we've dodged this bullet.
Michelle, I'm no doctor so I'm not sure I can answer your questions accurately. But, I'll give it a try. Dennis' GFR is really low (20-ish) but not down to 15 (which is classic dialysis). His nephrologist uses the GFR as a guideline but she takes everything else into consideration as well. The thinking is that dialysis is really hard on the other organs and, unless transplant is anticipated, dialysis should be avoided if at all possible. He is preparing for it (arm exercises, etc.) but we hope to avoid it forever. As long as his kidneys continue to filter out poisons at least as well as dialysis would, he'll avoid it. He has a lot of neuropathy as a result of the failing kidneys but dialysis patients also suffer from that.
Your husband's kidneys are probably not functioning at all and dialysis will do a better job than his own kidneys are doing. When that happens, it's truly life-saving. Fortunately, Dennis and I haven't had to face that yet. I'm glad you have a support group in this with you.
Walt, your "kids" are certainly successful. I'm sure you are a great father and you have contributed to that, By the way, I am also a software engineer, like your oldest!
I never realized the dialysis was so hard on the other organs and the entire body. The school for the patience and care givers sounds like a really good idea. Too many timespeople are going through these situations and are learning as they are going along. To know some of the things to expext or to look out for puts you steps ahead. Information is so important.
Michelle, I don' envy you riding your bike in those in those conditions, but a great idea to put it a higher gear when you get to work. I used to work at many different locations (up to 103 miles from home) and to carry a lot of tools and safety equipment, so a bike wouldn't work for me.
Kathi, I'm glad Emily is feeling better and that Dennis seems to have missed it.
I am very pround of my boys. I just wish they didn't live on the other side of the country.
I hope you both had a nice weekend and things are going in a forward and positive manner. I don't have much to report from over here. Been busy and just trying to keep my head above water. We went to Kidney School and even though I have read alot about Sorens situation, it was nice to be in an environment with professionals informing us about how things are, will be in the future and what we can expect. Soren was the worst off and the one closest to dialysis. Everyone there will be going into dialysis in the future and their numbers are below 25% functionality, Sorens is at about 14% max. But it was a good experience and we look forward to the next 2 times.
I am doing fine enough. I feel my head is a little bit more above water. It is still so hard, but I am getting better at coping in the whole things. It is still very much a roller coaster ride and I can go freefall all of a sudden but I guess I am getting better at adapting to the ups and downs. I am remembering to do things for myself and just taking the dog for at walk on a beautiful day in the sun and snow gives me a break and I can be in that moment with myself, the dog and nature and appreciate it. I don't use that time to think of things I need to get done or whatever. I am still on my stair-routine and I am biking in 5th gear. Ha ha!
I didn't have much to say this time. I just wanted to check in and wish you all a nice week. I hope Dennis, Leslie and Emily and boys out West are all healthy and doing good.
Nothing is new at my home, either. Emily is back in school. She's a TA (Teaching Assistant) this semester which she seems to be enjoying.
I'm reading a book about caregiver/spouses (not the one you mentioned - it's not available for Kindle). It's had me thinking about caring for myself. I have always felt that I do that, in fact I've felt rather selfish about how well I do that. But, the book has made me realize, that, in many important ways I don't take care of myself at all. For example, I haven't been to a dentist since before Dennis got sick (so 17 to 20 years). I often don't get my hair cut for 6 months at a time. I don't care how it looks as long as it's clean. I no longer color it, either, so it just hangs there, gray and limp. And I no longer care enough about my weight and physical condition. I don't seem to have the mental energy for all of that. I guess I tell myself that when I retire, I'll get healthy again.
How do you guys manage to get off the couch when you have time off? I will get up to do a puzzle or to bake but for little else. We did go to a hockey game Friday night. Dennis loved it. I was just tired.
It sounds like that Kidney school is very informative. That can be very helpful if you know what to expect as you go through the process. We used to take a neighbor to dialysis 3 times a week. She was in her mid 70's and did pretty well with the procedure. She passed away from other causes, but the dialysis definitely helped her.
It sounds like both of you are going through the typical situation of not taking your own care as seriously as necessary. I have gone through the same thing. I have eaten a ton (an exaggeration) of peanut butter and crackers and peanut butter and jelly sandwiches. It was the easiest thing for me to grab. I used to joke, if I wanted a meal I would have peanut butter and jelly sandwich and if I wanted a hot meal I would have peanut butter and jelly on toast. I have learned to do more cooking, more shopping and more generally around the house. I also realized that I had to stay healthy for Leslie because of the lack of a support system. I've had some help and I am very thankful for that.
It is great that Dennis was able to go to another hockey game. I'm sure that brightens his spirits.
Let's hear it for fifth gear. I hope that makes your trip a little easier.
I don't do as many projects as I used to do. I spend too much time on the computer, but I will probably redo a half bath this winter. I was always one to tinker.
We got Leslie a piece of exercise equipment. It is called a Cardio Strider. It is a cross between a stepper and a recombent bike. It is better for her because it is low impact and the rod in her hip can tolerate it. It has preprogrammed stuff and does both upper and lower body. She is doing very well with it and is using it twice a day. I'm on there too.
Brand new to this forum, but wanted some advice...
Hello all! I have been a cna for over ten years now, my name is katherine, i just recently got the opportunity to work as a live in caretaker for a sweet 88 years young woman...ive never worked a live in case before so im naturally overthinking every possible cenario that could arise...personal question is, i have a very supportive, very loving boyfriend..and he tell me go do this! It will be a great opportunity for you! My question is, for other caregivers who have been in my situation who took a live in 24/7 job, how did you all cope with family time..significant other time and balancing your life...im kinda feeling a bit overwhelmed...
I think you might want to try a forum or thread for people that do this as a job, as a choice of a job. I am not trying to be rude or dismissive, I just think that you might get some different and also qualified answers to many of the questions you might have. This posting by me is only my point of view, I am not speaking for others, only from my point of view. I am in this situation with my husband who is very sick and has a limited time left here with me. I am not in this situation by my own choice as an opportunity. Plus being a spousal caregiver is different than being a caregiver by profession. I also have an entire different take on this situation that has a deeper emotional depth because he is my husband and I love him etc etc.
Unfortunately I don't think I would be in a position (or experienced enough) to give you any advice. The only thing I can say is that it is very important that you get all the advice and tools (not physical) necessary to cope with this situation and give this woman qualified and encompassing care. It is not a choice to be taken lightly, this is someone's life and whatever you do or how you are affects her situation.
I wish you the best and hope you find the advice you need out there.
There is no balance for me now as I'm basically living out of my car commuting directly from work to hospital. I have a pet sitter taking care of the cats. Someone comes by to mow the yard but thats it. Otherwise I've had to let everything else go. The gutters are growing plants, the bushes are too high, the car needs an oil change the list goes on and on. When I was caring for him at home though routines were what saved me. One small step outside the plan and and the house of cards that was my life crumbled. For housekeeping I followed "flylady". It worked and was easy to follow. For meals I did bulk cooking. Check out sites for once a month cooking or freezer meals. DH and I used to love to go out to the farms and pick berries. I'd can them, make preserves, syrups, chutneys etc to last the year. When we had to learn to live with kidney disease my biggest help was a site called Davita. It's a nation wide dyalisis center. They have an awesome meal planner. I put in the protien, potassium, sodium etc and it spit out a monthly meal plan for breakfast, lunch, dinner including snacks that met his needs/restrictions. It also gave the option of switching items if something wasn't to his liking. The meals were quick, easy, and he enjoyed them. I found quite a few recipes on pinterest as well.
I was considering getting my cna license to learn more about how to care for him. He's bigger than me so moving him to get dressed and put the mat behind him is a challange. I was hoping to learn techniques for leveraging to make it easier. Are you able to do it yourself? TI also read about a brain waiver program that may help pay family/friends to care for my husband. I though I may be able to take advantage of it if I had to take FMLA. Unfortunatly spouses are excluded in my state. Are you able to share how people are able to find resources to pay for help? I'm trying to avoid medicaid and placing him in a nursing home.
I laughed when I read Walt's reply. Boy do I know that one. I am a food lover big time and have a better appetite if I do not have to make it myself. These past couple of years have totally changed by desire to make food. I used to love to cook and make wonderful meals for our guests and took great pride in being quite OK in the kitchen. The past years have ended in me being a grilled cheese (and ham) sandwich afficionada. Either that or soup does great too. I just do not like making food (nor do I have the time) much more. I have good and not so good days when making food, because I always make food for Soren now and he does not have to live on those choices :-). I make him what he wants, mostly because he eats so little and such a small appetite now that I make sure he gets what he wants, not always what I want. Plus I have to make a lunch to take with me for work and I have lost interest in that too. I also think it has a lot to do with time. It would probably be different if I did not have to do so much when I got off work.
So Kathi, I so get it about not taking good enough care. I do make it to the dentist and doctor's, but should do more. I am only 46 and I got lots of grey hair. I should get it done more often, I should put on make up every day. For me being clean, and in clean and presentable clothes and just getting out is enough. I don't look like hell, but I don't think anyone says "Wow, she does a great job of putting herself together everyday" so I manage. But nothing fancy or time-consuming with me on that point. I wish I had the time and energy to do more, but I can see that that is not possible right now. I just have to get it together and get out the door every day. WIth regards to your having energy to get up and about. I need a better STOP button. I just keep going and need to listen to my body and self and stop, I usually just keep going. So it is all about finding a balance. But I must say, the doing more exercise does help, even in small amounts Kathi. I am only doing the stairs a couple times a day and walking a bit more but I can feel it. It is hard because I am so dang exhausted a lot of the time and sleep is not my friend, but I push myself to do it and can now see/feel small positive effects. I need to be stronger for myself and Soren and like Walt says, we need to be on top of our game to help others. I have no support system either as of yet.
Sounds great that Dennis got to catch the hockey game and I just checked out that Cardio Strider, I think Soren would benefit from one of those maybe once he gets started on dialysis and maybe gets a bit more energy. They look fantastic and do not look like they get locked in 5th gear, he he! Much good energy Walt on the tinkering, although making a ½ bath is not what I would consider "tinkering", I would call that construction and a major project. How great that you can do those kind of projects, I wish I was more productive and could build a ½ a bath!
Katherine, the situation you are entering into is some what different than what most of us face. We are all spousal care givers who in addition to taking care of ours spouses and in some cases children also maintain a full time schedule. On that front this would be your job and from that point of view be maybe a little easier. A friend of mine had a similar job. She found that in addition to the patient care she was also running the household (paying bills, food shopping, doctor visits etc.) which she didn't fully expect. So depending how much this woman's family interacts with her might determine your roll in all aspects of her care. I think it is a very noble thing that you are going to do. There will most likely been some restrictions of who and/or when you could have visitors in the house. I hope all goes well with it and please stay on this forum so we can get your point of view on taking care of a non-family member full time.
I'm 70 and being retired really allows me flexibility in taking care of Leslie. I haven't had a physical in quite awhile. I know that should be one of my priorities. I think I'm afraid that if I found out I had some kind of problem I wouldn't be able to take care of Leslie as I do now.
The bathroom project is just a redo where I would paint redo the floor and replace the toilet with a chair hight toilet. I highly recommend these. They are taller and make it easier to get up and down. We redid the main bath a couple of years ago and put in grab bars, a chair hight toilet and a taller vanity (about 3" taller) and it has made things easier. Also added a handheld shower and a portable seat that Leslie uses.
The Cardio Slider has 20 diffent resistance levels and at times it feels like you are in the wrong gear.
I am a little interested as to where this will be posted. There is some kind of glitch on the site. I went to the last posting which was by Walt and there were no buttons to click to either REPLY to the posting or to post a new one. So I found this only opportunity to post and I have a feelibng it is on the first page. Hmmmm....
Kathi, I have thought about you many times, I hope you (and Dennis) are doing OK? It has been several days since we last "saw" you, my thoughts are with you. I hope to hear from you again. Walt, I have also thought about you and Leslie, how are you both holding up and how has the weather been where you are at? Are you both doing fine and in good shape? I wish you good conditions and safe roads etc. Let me know how you are doing when you get the time.
Been busy here. Going to Kidney School on the Thursdays. Soren is getting worse health-wise; he sleeps so much, is totally exhausted, gets nauseous and sick and feels terrible. We are waiting for the letter telling him that he will be expected to go to the hospital to get the fistula operated in so he can heal and then start dialysis. It is very hard being with him so sick and seeing my husband, a 53 year old man, walking around and laying sleeping all the time, utterly sick. We got a letter from the eye doctors telling us that they might, against all odds, improve his eyesight a minimal amount, but we should not expect it and he will be blind. He is almost blind right now, due to his diabetic retinopathy. When it rains it pours.
I am doing what I can to keep my head above water, but just barely. You know the days where you feel like you are just going through the motions to survive? That is me right now. But I am putting one foot in front of the other.
Hello. I just found this site and have been trying to read up where I can. I seem to share some similar circumstances and I appreciate those that have shared their experiences. Its been difficult for me. Mostly I'm very very tired today and still in reaseach/fight mode. At some points I've been so distraught and my only comfort was a warm blanket and a purring kitty. I don't know where I'd be without my furry babies as I don't see much of a life going forward.
Caregiving for my husband came on slowly. So slowly I took it in stride and was able to be nimble and adjust. A work related back injury reduced us to one income. We got by for many years. It was painful but the mobility issues progressed slowly and we stayed one step ahead of it. Fast forward to 2 years ago. Chronic Kidney diesase. Panic. Learned. We were able to bring back his kidney function (only has one kidney) by watching his diet and being careful of the meds he took. The Dr was so impressed with the recovery. We went from a 18 GFR to 50-60 GFR. He said if we keep doing what were doing his kidney will outlast him. I was feeling quite proud. Next up cancer. The feeling of hearing that is like no other. I couldnt function for days. I was at work when the Dr told me. I had to leave. I couldn't continue. How would I tell him he had cancer and his family? How could Drs tell me that this is the "good cancer"? Cancer is never good. I was told it grows so slowly that no one dies of it. Something else will before that. Again research, learn. We managed. We watched and waited. In June the oncologist suggested it was time to treat. Panic. Research. Early intervention has not been shown to increase quality or longivity of life so timing is important. We traveled from Fl to Houston to MD Anderson which specialized in CLL. Do you remember the storm and flooding they had when Houston was under water? Yup. Thats the day we were there. They did not recommend treatment yet so we felt we dodged another blow.
Moving forward to August was when our world was turned upside down. A painful headache dr thought was about to be shingles became something more. A few weeks and a failed transfer in the house brought us to the ER followed by admission. He rapidly declined. On my birthday he told the nurse for the first time he didn't know who I was. I held it together until I left the room. He continued to decline to the point he was nonresponsive. I never left him at that hospital. Fortunatly I was prepared with a hospital go bag with food/clothes etc. Multiple specialists were called in all with differing opionions. The final was that it was a uti that when resolved he would come back or it was some type on ensephalitis. They released him to an LTAC hospital and gave up on him. They even canceled the tests without telling me. A couple months later with a new care team we got the news. Nontramatic brain injury due to the infection Valley Fever. Finally we knew our enemy. They got him on the right meds but the prognosis was very poor. He was still nonresponsive.
Many were telling me to give up. One Dr told me "everyone has an expiration date". Another Dr upon meeting me for the first time told me my husband "must have been a vigirous man to have you for a wife" (he's much older than me), and proceeded to go into DNR suggestions. The Infectious Disease Dr at the first hospital did not support any life saving measures. The nurses gave up on him. His kids who rarely visited were telling me we'll support whatever you decide. I felt the weight of the world. Chest pains, inability to eat, I got lost in hall ways and on the road when I had to return to work. I had to leave work hysterical and bail out on my co workers when he took turns for the worse and was in distress. All everyone else could see was the multiple comorbidity issues and his age. None could see what fighters we are.
Currently we made it to an Acute rehab hospital on Friday that specializes in brain injuries. There are 10 in FL. What a fight that was to make that happen. He is now able to talk and is beginning to eat. He is total care basically trapped in his body. I travel 116 miles each way from work to the hospital to participate in the therapy. They are teaching me how to use a hoyer lift and the other skills I will needs to learn to care for him if they allow me to take him home. Unfortunatly I was bluntly told from his daughter I can expect no assistance whatsoever from them reguarding his care at home. This is a huge road block. I have to work. He cant be left alone. I prayed for their souls. They took care of their mother through her cancer. Shes helped friends when they lost a loved one. She invited a member of her Corvette club into her home and did hospice care for him as well as settled his estate. She offered to take in her grandmother who is 89 and going blind into her home for 24/7 care yet she could not visit 10 nights a month even if I took in her grandmother as well so the grandmother could keep her Drs and be close to her son so I could bring her father home. All I asked for was time and love for her father. I would do all the heavy work. I do not need money from them. Just time and love. She suggested I put an ad in the paper for a retired person ... a stranger...to come sit with him. I can't afford to pay someone. Medical bill are all covered almost 100% but custodial care is very limited in my insurance policy.
I'm taking a breather today. I did not have enough time between my shift last night and today to make the trip to spend the night with him. I will go back after work tonight. I didnt sleep well. It was a good thing I came home though. I was not able to drive safely. Today will be easier. It was good to see the pet sitter is taking good care of our kitties. Hopefully the neighbors can help out for now. We still have a very long road and I can't afford the pet sitter much longer. He's been in a hospital since August. Still I fight. I stand on my own two feet alone in this journey with him trying to see the road ahead through the storm. It's raining today but tomorrow is another chance for the sun to shine.
Kim you sound like an amazing woman who is going through worst things that could happen. From the comute to be with your husband, the having to change doctors and finding the right grop and diagnosis, to the family not wanting to help out in such a dire situation. Honestly, my heart goes out to you. I hope someone can suggest something that will make your life more simple and less taxing both physically and mentally.
New Jersey just got 22" of snow along with wind gusts to 65 mph. So I have been digging out. Shoveled enough to get the cars out and to give the cats a couple of paths that they can use. They are happier after spending yesterday in the house.
My neighbor used a Davita facility for dialysis and they treated her very nicely.
Michelle, the blindness has to be a huge hurtle. To have to learn to move around blind is something that I can't even imagine.
Research is always important like Kathi reading the care giver book. It is something that we all have to do and hope that we do not make any wrong turns along the way.
I'm going to relax so I can continue shoveling snow tomorrow.
Walt, I'm glad to hear that Leslie is doing so well. I'm glad the cardiologist said everything is looking good. :)
I'm glad you're having some nice weather. It rained some here last night, and today a little bit. Jennie and I saw a rainbow today,it was so large and stretched across the sky. It was so beautiful! :) It was windy and crisp, rare for California, but enjoyable.
We went grocery shopping to get something for dinner and decided to get marshmallows for hot chocolate.I almost forgot to buy cat food,I'm glad I didn't, we would have had a very cranky cat. :)
My thoughts and prayers for everyone.
Alice
On Black Friday on of the local pet stores had a lot of things on sale, but I stopped in and bought 6 cases of cat food. My 3 cats go through 2 cans a day plus I always have dry food out for them. They will be happy for a long time.
Rainbows are a great thing in nature and they almost always bring smiles to everyone's faces. I have 2 sons that live in California. One is in San Diego and the other is farther north in Menifee. It is amazing the difference in temperatures and weather conditions between the 2 places.
Our local Bald Eagle was in his normal place in a tree acrosss the creek. I had see him for about 2 weeks. They look so majestic when they fly around.
Another nice weather day here. Leslie went up to the library to pick up a couple of books that they were holding for her. Then she did a little shopping. It is great to see her going places and doing things on her own. She has been a trooper though everything she has been through.
My prayers are with all that read this.
Walt
The marshmallows sound like a great addition to the hot chocolate.
Walt and Alice,
Good to hear that all is well with you both. I hail from Nothern Minnesota where we're actually threatened with a green Christmas. Very rare indeed. It's supposed to snow Wednesday. I'm hoping it does even though I dislike the cold now that I'm older. Minnestoa - Christmas - snow. That's how it's supposed to be. Last Christmas we had a couple of feet of the stuff and it was COLD! I can't say I miss the cold, just the pretty snow.
We had a very busy weekend and Dennis was well, mostly. He makes me laugh every day but he was particularly funny this weekend. My poor daughter took the brunt of it but she can hold her own. Daddy's girl.
We did run out of cat food on Fridayso Kikkoman Kilmouski got tuna on Saturday morning. Happy cat, happy life.
Kathi
Snow was much nicer when we were younger. Now I just try to get a few pictures of the waterfowl and snow before there are any footprints. Or pictures of the snow and ice clinging to the bushes and trees. Then I go out and shovel.
Kathi, it is great the Dennis had you laughing so much. It is over used about laughter being the best medicine, but it almost always lightens and brightens the heart.
If Leslie opens a can of tuna, all three cats show up. It doesn't matter if they have just eaten or not, they are there. Amazing they actually share pretty fairly.
Walt
Hi Kathi and Walt,
I'm so happy to hear that Dennis and Leslie are doing so well. :)
It made me smile to hear that we are all cat people. :)
Sorry I haven't been on but my laptop decided to go on strike, I guess I will have to have it looked at. It let's me on,then shuts off, then doesn't let me back on for a few days.
Kathi,I hope you have a white Christmas, it must be a beautiful thing to see, to have a white Christmas must be amazing. Maybe one day I will see one.. Walt,I always wanted to see a bald eagle, just watching them on t.v., watching them soar, gives me an idea how they must look like in real life.
Here we can get to the mountains or the ocean within an hour, maybe it's something for me to think about. :).Short road trips. :)
Alice
Short trips are nice because they can be spur of the moment outings that brighten your day.
We have had two Bald Eagles hanging around now for almost a week. They are amazing to watch. One was on the beach eating a fish it had grabbed and a beaver walked within about 10 feet of it. The Eagle never stopped eating but it kept an eye on the beaver. So besides the cats I have the wildlife out back and a squirrel that comes and sits on the rail at the back door and lets me hand feed him.
My best to everyone.
Hit Walt and Alice,
Well, we will have a white Christmas. We have a few inches of snow on the ground now and it's not supposed to get above freezing before then. It's pretty. I took a short trip through the forest to my sister's house yesterday. Yikes! That's when snow isn't so nice. It was a slippery trip (an hour each way). Her house is also our Christmas destination so I hope the roads improve by then.
Walt, you live near the beach?! How nice. I can sit next to one for hours. It's amazing because the waters are so violent and dangerous yet they are so calming. I'm at least 1400 miles from any ocean but I do have a house/cabin on a large lake and I live in a town on Lake Superior so I have some water. After I retire, we plan to move to our lake home to live in the summers and we hope to get a place in Florida for the winter so we'll have both! I'm so looking forward to it.
I hope this season isn't too hard on you, Alice. I wish you peace. You'll be in my thoughts.
Kathi
Kathi I spent time in Connecticut in the late 60's when I was in the Navy. Up there, snow was no big deal. When it snowed, they plowed. At each intersection that was on an incline, there was a barrel of sand in case you needed it to get moving up the hill. In New Jersey they do a pretty good job of cleaning the roads and salting them. Only if there is ice is it really bad. My brother lives near Atlanta. if they get snow or ice they just close most things down.
I'm not on the beach at the ocean. I live on a tributary (Rancocas Creek) of the Delaware River north of Philadelphia. The creek is about a quarter mile wide where I am. I am able to have a dock with the boat right behind the house. There is boating, fishing, water sking, kayaking and all the usual happenings going on. It is fresh water which is easier on the boats than salt water.
The lake house sounds very nice.
My thoughts are with all of you.
Walt
Hello,
I have been really looking for a FORUM where I could get some advice or just hear from other people in a similar situation. I got caught up in Karen S and Smedley_Butler's openess, honesty and experiences and decided this was an amazing place, by the time I got further on I could see they were gone. I feel so alone and isolated - watching everybody else live their lives in a "normal" world and I am stuck outside the box.
A long story very very short: I am a 46 yr old American woman living with my Danish husband in Copenhagen Denmark. We have been together for 18 yrs and he is 7 yrs older than me. He has had Diabetes for the entire time, type I, but has had no problems. 22 mths ago all of a sudden BOOM! A blood clot, double bypass surgery, a blood clot in the leg, toe amputation, is nearly blind now (can see maybe 15% right now max), he has a depression and we were informed 3 weeks ago that his GFR numbers are real low and he will have to start dialysis within the next 6 months. In and out of the hospital for months and months and I am doing my full time job, (he has not worked in nearly 2 years now), cleaning, buying food, doctor appts, making food, cleaning up, doing his pills, doing all the paperwork, making sure he is feeling loved and taken care of. I am just so burnt out; feel like an empty shell and I cannot believe this is my life and when and how does it end? I know this is my journey, I am trying to do the best I can and I do fail at times, but I am struggling and learning, crawling and getting wiser. I have experienced a strength I did not know existed in me and I feel like the strongest person in the world and at the same time beaten to my knees.
Can anyone give me some wise words or advice as how to learn to take better care of ones self? My sleep is so bad, I eat so irregularly and I want to be able to go to the gym again and be good to myself. How do I find the desire again to be social with other people and be OK with that they have heard the same story for me about my life for the past 22 months? I can feel I have been isolating myself because it is hard when nobody knows what you are going through. How to be better at asking for help.
I wish you all a wonderful day/evening wherever you might be, out there.
Michelle
Welcome Michelle
I am sorry for your situation. I think you have identified what most of have gone through. you also have realized that you have to take of your own health so that you can continue to be a good care giver. Eating right on a regular basis is important to maintain yourself. Sleep is another area that at times seem no-exitant or at least extremely difficult. Trying to get eating and sleeping sorted out will get the other things more in order.
Be careful of what you consider a failure as a care giver. At first I thoght I had failed if I was 10 minutes late with my wifes medications. I have learned not to be that hard on myself because it brought me down thinking that way. When I was feeling down it made it all that much harder to do the other things that were required of me. I was able to retire to take care of Leslie. It makes it much harder to do these things while you are still working full time. It might be possible for you to get nursing help in the home (I don't know how Denmarks medical system works) or to have friends or family help out so you can go to the gym or take a little break from the constant care.
I hope some of this has helped you see that you are doing a good job of caring for your husband.
Please keep us informed of how things are going. Don't hesitate to ask any questions. This is a small but very caring forum.
My thoughts and prayers are with you.
Merry Christmas to all and may God look down and smile on you.
Walt
Dear Walt
Thank you so much for taking the time to write me. It meant so much to me to get a response, read your words and wisdom, and be in the same place as people in the same situation. It took me a long time to get here. I know I have been a caregiver for "only" 2 years now, but I am a very stubborn person and thought that I could really do this on my own. (I guess it is about time that I see that this is going to be a major life-lesson for me...) Plus when I read the comments here it was a double-edged sword; I felt like I finally found a place where others knew where I was coming from, at and on my way, but on the other hand it broke my heart to also read the pain, suffering and heartbreak. I, as probably others, are so taxed (mentally, emotionally and physically) and I was worried that I would get more involved than I could handle, blah blah blah. I can see now that I was making excuses for not getting engaged in this forum. So, I did my dive into it and I look forward to having it be something for me as well as others in the same life realm. I hope I can, in time, give back in the way that I feel I have received insight and knowledge here.
Thank you Walt again and thank all the others on this forum for their honesty, caring and involvement here. I look forward to partaking in more comments and until then I wish you (all) a Merry Christmas and prayers to all.
Best wishes
Michelle
Michele
It seems like it takes everyone a long time to give into the idea that maybe I can't do this all by myself. I was extremely lucky with the doctors that treated Leslie. I asked them to be honest and open with all the test results and explain all the options. It was a Orthopedic doctor that discovered Leslie's breast cancer had returned as bone cancer (while she was being treated for a shoulder problem) and it was her Oncologist that sent us to a Cardiac doctor to tell us that she needed a new Aortic valve put into her heart. So she was blessed with good medical care, but I also did research and asked what I thought were important questions. So one of the added "jobs" of a care giver is also a research guru.
It is difficult to read about other peoples problems, but as read each entry I learned something new or else it opened my eyes to my feelings that I thought no one else shared. Hopefully you will have the same thing happen to you and it will make your journey easier.
Please don't hesitate to vent when you feel over loaded. For me just typing in my feeling or frustrations gave me another time to think about them and open my mind a little. There may be times when you think the doctors aren't concentrating enough on your problems and there may be times when your spouse seems to lessen the fight against the problems. I would get frustrated when Leslie wouldn't go for a walk with me (advised by her doctor) , but would walk with someone else that came to visit. I recognized that problem and asked friends to come over and take a walk with Leslie. That got Leslie her exercise made me feel better as a care giver and I was happy that I found a solution to that bump in the road.
I hope some of this makes sense.
To ALL
Merry Christmas.
I hope everyone here had a nice holiday season and a good New Year's start
Once again, thank you Walt for your words and time, I really appreciate it. I do see how all these posts help, just reading, learning, opening up and taking in the stories/words and advice helps. I am still learning to deal with the isolation and frustration, this one is going to take a while. I have a feeling I am also slightly mourning the loss of what was and what I thought my life with my husband was going to be. At 46 and him at 53, I would never have in my wildest dreams thought this would be how my life would turn into so soon. I have no grasp of what things will be like in 6 months, no one tells me how a general outcome of people in this type of situation forms and what I can expect. I miss love, I miss having a partner, I miss having a more carefree life (just to go on a trip or have an experience out of the apartment), I miss having a husband that can see, I miss having someone having my back. I am frustrated this is my life, I hate feeling egotistical and wondering why this is happening to ME, I hate getting furious at a small thing that just triggers total anger when it shouldn't (can be having an OK day and then something at home happens and I in my head lose it and am totally mad and want to just walk out and not look back. I am envious at my friend's and family's "happy and easy" life with "small" burdens and the ability to not have to think 100 steps ahead and have everything be a major project. I hate the guilt and the emotional roller coaster of my day-to-day life. WOW! Did I vent there or what, I guess I needed to get that out. Funny, I have been to this forum a couple of times during the Christmas holidays and it was quiet and I did not want to write a bunch of negative stuff and be what some call a Debbie Downer. I felt fine logging in today and all this came out. Jeez, it has been really nice to have some days off for the holidays, but it has also been very stressful being here every day and at his beck and call (I want to be there and help, but it was a bit overwhelming for 10 days). I do look forward to getting back to work and feel guilty of leaving him here to be on his own until I get home every day.
On a brighter note, I am really working on changing my mindset and learning to appreciate what I have been capable of doing and what I am still doing to this day, it is an amazing feat and I must learn to be proud of what I do every day and not focus on what still needs to be done - I am in for the marathon and not the 100 yard dash. I am trying to remember to make an effort and stop up every night before I go to sleep and tell myself I doing a great job and I am doing my best. I can glimpse that I have been given a unique opportunity to do something that demands so much on so many levels and right now in my life I know no one going through the same thing on any level. It makes me feel so alone and sad and apart from everyone else, even my family. But I will get through it and be a better person with greater insight, deeper understanding of things, a heightened appreciation for other things and also a wiser person. For that I am grateful. I am no where near that yet, but I can see glimpses of it and now it will in time evolve into more than just a thought. It is all part of the journey....
I wish you all a Happy New Year and may it be filled with happiness and peace
Michelle
Michelle
It sounds to me that you have identified most if not all the major problems we have as caregivers. The idea that this is a marathon is important. Just knowing that all these things won't magically disappear tomorrow or next week allows you to set a pace to do the things that are necessary.
You writing down your feelings and frustrations hopefully bring them to your conscious mind and allows you to deal with them on a different level. Just thinking about these things and not opening up and talking about them can cause more frustration. Let me say this, the way you wrote about your problems, feelings and frustrations was really very eliquent and flowing. I always have trouble putting my feelings on paper. It also shows that you are dedicated and very caring.
I know this is a caregiver forum and it has opened my eyes to many things, but I hope that you are also looking at other forums that can deal with the specific problems your husband is dealing with. I have never had to deal with loss of sight, so I don't know what it is like to deal with that problem, or the frustrations particular to that problem.
Thanks again for "venting". It shows other people that read this forum many things that caregivers go through.
To all, my thoughts and prayers are with you and hope that the new year brings hope and peace.
Walt
Hey Walt
I got very happy when I saw there there was already a posting after my posting and that it was from you! Thank you and thank you for your words. I will look into the other forums also, I still have not even spent enough time on this one to know the ropes entirely. Not many on this specific forum and I wonder if others will come back? Maybe just the holidays.
But this posting is a specific question for you; you did not write anything as to how your holidays went. How did your holidays go? Did you have any nice experiences that brought smiles or laughter? Did you spend it with family? Do you have any nice experiences planned for 2016? How are you doing? What are you up to? May I ask? I was just wondering because you mentioned nothing of yourself and what is up in your neck of the woods (so to speak).
I wish you a wonderful day, it is 8 pm Copenhagen time and I have to get ready for a new work week starting tomorrow; mixed feelings about that (read: wouldn't mind winning the Lottery big time and re-arranging my life on certain levels - yeah, ok, we can always dream, right?).
Best wishes
Michelle
Michelle
I had a nice quiet Christmas. We spent the part of the day with Leslie's family which included a nice family dinner. The nieces and nephews brought smiles to everyone's faces. My family is scattered. My two boys (45 & 47) are in California and my brother lives in Georgia while Leslie and I are in New Jersey. No speciffic plans for 2016 (Wow that's the first time I wrote that date). I might get out to California to visit the "kids". Leslie and I are both retired so the winter months are a little slower than the summertime. I try to find some projects to do around the house. It seems like a good time to redo a half bath. I've been helping a neighbor get ready to move and I know the woman (a friend) that will be moving in, so I will probably help out there. We go boating in the summertime.
I am a retired electrician that worked for a public utility. I enjoy working on boats, motors and cars, as well as some home remodeling projects.
Well, that's pretty much about me. I hope you are holding up ok through everthing you and your husband are going through. Maybe this year will bring more help to lighten your what you have to do.
What kind of work are you going back to tomorrow?
Walt
Yes, it was the busy holiday season that kept me away for a couple of weeks.
Michelle, your writings have taken me right back to the pain and frustration of the beginning of my husband's chronic illmess. I was 46 when he suddenly became critically ill and unable to work. We, too, did not know what his prognosis was (and we still do not). Neither did we know what brought on this sudden kidney failure and septicemia so we worried all the time that the doctors were about to discover what dreaded thing was about to do him in. I, too, have worked full time since then (now 15 years on). It's really frustrating. On the one hand, I sometimes feel that I'm not a good caregiver because I'm at work all the time and, often, when I get home, I'm too tired to be good at it. This is especially true as I get older (61 now). On the other hand I have felt like caregiving is all that I do and all that I'm worth. My work has provided me an alternative raison d'etre and I have learned to be grateful for it. I often feel lonely and isolated as you do.
But, all of those feelings are so much less intense now with time. We no longer care what brought on his illness and stopped obsessing over what was going to bring on the end. We know now that our job is to live the best life we can one day at a time. My husband has changed a great deal since then. He's managed to find gratitude and humor again. He is much less fearful and more able to care for himself. His attitude has saved me. Also, after the first year, I finally spoke to a doctor and got some help for myself. That changed everything. I began taking anit-depressents which I still take and always will. They have taken the edge off my anxiety and hopelessness just enough for me to get on with my life without the constant feeling that the world was about to crash down on me. I'm no pill-popper and I'm not recommending this for you or anyone else. I DO, however, recommend that you talk to a professional about your own stress, anxiety frustration, and fear. It can't hurt.
This message is meant to be hopeful. Time really does help and you've already put in the worst time (the first couple of years). It is my hope for you that things will only get better, not worse, from here. May you and your husband learn to be happy again, one day at a time. Nothing about this journey is easy but it can be rewarding.
Kathi
Kathi
That was very well said, giving a great amount of insight to the feelings and frustrations of a care giver. It also shows how important it is for the care giver to remain healthy both physically and mentally. Hopefully anybody that reads what you wrote will understand that they are not alone in their feeling. Thank you.
Walt
Hello Kathi and Walt
You both have no idea how wonderful it is to read your posts and words. I am so grateful and I thank you very much. I hope one day I can pay it forward and help someone else like you both have helped me. Your posts have been like this shining lifeline in the dark. It is not all darkness and dispair, and I do not go around out of it, but I have felt so alone and have not conversed with others going through caregiver issues. I think what knocks me off my feet is the constant emotional roller coaster feeling. Sometimes I feel like I have had an OK day then a piece of bad news can knock me down. I am still standing and not crying, but inside it is all turmoil, unease, anger, sadness or whatever. And it can be a totally ridiculous thing that happens. Sometimes I just need to cry and get it out and I do this alone. My husband is in such a fragile (depressed and not that healthy state right now) and his world is so overwhelming for him that he has not been able to give me strength or the feeling of being protected in years. I am the ever strong one and his source of "Everything will be OK as long as she is OK by my side". It is all such a big responsibility. I think once I get through and accept 100% that this is my life and my path and no, it is nothing what I wanted or imagined or hoped for, but I am here and doing it, then I will tread a little faster. I have started seeing a psychologist and we will see how that goes.
Doing this whole thing really puts me to the task on many levels. But I do realize now more than ever that I have to take care of myself better. So I am eating better, have started a task of taking the stairs ( I live on the 5th floor) instead of the elevator (one week for each level until I get to the fifth floor), make sure I make it to the health club, longer walks with the dog (I walk her everyday for 2 x 15-20 min), I do already bike back and forth to work (only 2,5 miles each way), but I need to lose weight and get stronger, so that is my long-term goal. I feel really motivated. It feels good, like my body and mind crave it.
I always laugh a little when I am about to send my post, it is like my fingers get a life of their own and just write and write, a lot of pent up stuff here.
Bottom line is gratefulness. I found this place, and so thankful that people I do not know would take the time to write me and help in more ways than one. I could not find anything in Denmark and being an American makes it easy enough to be here, it does not matter where I am, all of us being online. PS: Walt, you asked: I am a Translator and Interpreter. I received my MA from Copenhagen Business School. I speak English, Danish and Spanish (fluent) and a little French and German ( no where near fluent, but I would survive getting dropped in the country). I worked as a Translator for several years, but got so bored with sitting 8,5 hours a day in front of a computer and not interacting with anybody. I started applying for administrative jobs where I could use my language skills also. I now work at an international singing institute for professional and semi-professional adult singers.
I hope you both and other readers have a wonderful week, maybe with some nice things planned or time off. How are things where you are and do any of you see a new year as a new page for new hope, new routines, and thinking/understanding? I do.
Best wishes
Michelle
Michelle,
You really got me when you said you always have to be the strong one and "I'll be OK as long as she's by my side". It does feel like an overwhelming responsibility. Before Dennis got ill, we had decided that I would retire at 50 to stay home with our (then) 10-year-old daughter. Finally, someone would have my back (financially). That had never happened to me in my life. I was always the primary earner. When that possibility was stolen from me (yes, that's how it felt), I was SO angry and resentful. Not only that, but HE got to stay home with our daughter. I know how selfish that sounds and I sincerely would not trade places with my husband for anything, but it was how I felt at the time.
Gradually, I came to realize that I could handle the responsibility and that many people could not. Fortunately, we could live on my salary and I was grateful that our daugher was out of day care (she was only 6 when he becane ill). When I read what you write, it seems so obvious to me that YOU are even more capable. You don't need to TRY to take on this responsibility, you already have! Try to relax about that, you do have what you need to do what needs to be done. This is a great area for one day at a time. You can "be his everything" today. There's no telling about tomorrow and no use in speculating about it.
Of course, your husband is responsible for his own happiness, peace, and joy. At the moment, he's struggling and you're there for him. I suppose that's what marriage is, with or without illness. I hope he can get some help for his depression. Dennis went through that as well and it was positively the worst year of this whole adventure. We've learned to talk honestly about our feelings, especially the scary ones, and it has made us even closer. That took some time, though. I thought had to deal with some of my stuff (resentment) without involving him so I relied on friends and close family. But I had to dump the resentment tank. I can't live like that.
Dennis and I have a short adventure planned in February. We're going to Florida for a few days. It will be a huge relief to get out of the below-zero cold for a while. He can do these well-planned and short trips now. At first he was afraid to leave home because of all of this "equipment" and dependence on a clean and predictable environment. I am going to Great Britain with our daughter in June to celebrate her graduation from college. He won't be able to go with us, of course, but he is happy that we're going.
Kathi
Kathi / Michele
It would be so nice if we could get the information and feelings that you two have written about to every care giver out there. Both of you let your feelings flow onto the page and open yourselves to the "hard facts of life". It would be an inspiration to anyone who is going through any of these problems. I'm more of a technical writer but both of you just open up your hearts.
THANK YOU FOR THAT.
Kathi
It's great that you and Dennis will be going to Florida and even better that you feel at ease going to Great Britain with your daughter.
Michele
I have to agree with you that sitting behind a desk all day would be boring. Being retired the interaction with the people I worked with is the thing I miss most. The way you are planning your exercise routine sounds very sensible and well thought out.
Walt
Walt,
You're not just a technical writer. You have helped me a whole lot and I thank YOU. And I'm grateful to Michelle for expressing her feelings so fearlessly. It makes it easier for the rest of us.
Kathi
I am really glad that I could help. Sometimes friends and family ask how things are going but don't really understand fully how things are, even when you try to explain it to them. This isn't taking anything away from them, they just don't "REALLY" understand. To have other people that are experiencing many of the same feeling and frustrations and all of the other things that a care giver has to deal with is very helpful. I am glad I found this forum and have had a chance to interact with everyone.
Walt
Hello to Walt and Kathi and if anyone else i out there reading this,
Do you want to hear a secret? My husband got picked up by his brother yesterday afternoon while I was at work and he spent the evening with him and his family. I had the evening off!!! It was so wonderful, I actually went around smiling and did what I wanted for some hours before they came back for drop off. It was so nice to have some alone time and not be at work or doing things to get his stuff together. The two previous nights he has been very restless (I think he is getting to the point now where the dialysis is going to be put into action by the doctors - he eats so little, has nausea, throws up and just sits and rests all the time, dozing off, feels like he is 95 yrs old) so he has slept in another room. I cannot remember when I have last gotten over 5 hrs a night, felt like a miracle. Sleep should never be overrated, that is for sure.
Anyway, the secret.... I felt like I had an entire day off, albeit a few hrs. So I had decided I would wait until today to see if any of you had been on the forum. If I looked I would read and then most likely respond, I wanted to make sure I spent one evening with my eyes away from the computer, spend all day at work at the computer and then most evenings helping Soren do his mails, doctor things etc etc. Well, I checked anyway right before I went to sleep last night and there were messages, it was like a Christmas!
I did not read what had been written until this morning right now, I made myself wait til today like opening a Christmas present. But just knowing that there was something to read (no matter what it was gave me much happiness). Isn't that funny?
Kathi, I so understand the anger and resentment, it is such a big issue and I suppose no one (caregivers) can wiggle around that one. Either you get through it or you don't, I can't imagine it being something you kind of get through. I am so glad to hear that you finally could get through it and let it go, gives me hope that one day I will too. What a huge life lesson. I have no idea how you did all that with a small child and a full-time job at the time, that amazes me. Hands down, total respect for you. At this stage in my life and the difficulties I am going through I am so thankful that I did not have a child (we tried and could not, he cannot have kids and now I can see probably based on his sickness). I was so sad about that then, but now I would be even sadder having to also deal with constantly not feeling like an inadequate mother becuase of dealing with a sick husband, just being so exhausted and being a good mother. How did you cope?
I am happy to hear that your relationship has evolved and your husband has a different outlook on life. I wonder if my husband will ever get there.... we will see. How is Leslie on this point, Walt? Does she cope OK with her situation? Stupid question, but I hope you know what I mean, is she at a point of acceptance and does she try to get the best out of things? Is she depressed (like my husband) or does she have a better mindset? One thing I have noticed about my husband and I (difference-wise) is that I have really found out about our personalities - I am a total fighter and plow through things head-first and act and react to situations. He is very much the opposite. Of course I do have to take into consideration the huge difference that I am not the one coping with all his ailings, I am the by-stander, big difference. But I am amazed at how different we are on that point.
Walt - sounds like a nice plan you have of getting out to your kids in CA. Where in CA? I have lived in San Diego (Air Force Brat) and then in NorCal - a couple hours north of San Francisco. I hope you get to do that. Do you have a support system to take care of Leslie while you are gone? Can she go on small trips with you at all? Kathi - congratulations on your daughter's upcoming graduation. You must be so proud! Sounds like a wonderful upcoming trip to the UK. You are going to have a wonderful time. Where will you go? Will you visit London, have you been to the UK before? Your upcoming trip to Florida sounds wonderful, a little bit of envy here - in the good way :-). I was supposed to go to Rome for 4 days from Jan 20 and on to visit my best friend who lives in Albuquerque visiting her daughter in Europe (the hotel was paid for along with the plane ticket), but the situation is so bad right now, plus Soren just got his eyes operated on again so he cannot see anything, that it is just not an option. I had to cancel :-( We had planned to go to the States this summer, but with the whole dialysis thing about to get arranged, that will not be an option. So I am going with my friend Jane to London for 5 days in mid-May (come rain or shine I am going on that trip).
Walt, your words and way of expressing yourself is fantastic, I am behind Kathi on this one: you do not write in a technical manner at all. You have helped me so much and I love reading what you have to say. I think maybe because I write SO much that you think your writings are technical, probably a girl thing, I am very expressive and cannot keep it short (I do wich I could though many a times). Your writings to me when I first got on the forum will always be my light shining through the total darkness, for that I am ever so grateful and I do hope you continue to write when you get the chance, I always look so much forward to reading your posts. The issue you write about having family and friends not really getting it, I sooo get that, I spent so much time trying to get people to understand what was going on and how it is, but it was a losing battle. It is never going to happen, I am learning to accept that, probably because I have this forum to "lean on". Thank you both for that.
I had some questions for you both, but I think I will wait until next time because this posting became soooo long, I don't want to exhaust you both just having to read this and it can wait til next time. I apologize for any typos or errors in my postings, I never read though my stuff unless it is official or work-related. It is a very bad and lazy habit, but I always end up being out of time (I should have started work 15 min ago, so I have to get going), so for that my apologies ahead of time.
Have a wonderful day all and I look forward to conversing again.
Greetings from wintry and slight snow in Copenhagen
Michelle
Walt, Yes, I too am curious about how Leslie is coping. How is she doing?
Michelle, I write too much as well. There are a lot of pent-up feelings and this forum is really the first time I've felt free to express them. They pour out of my fingertips.
Soren's illness sounds dreadful. My husband also deals with the constant vomiting (kidney failure will do that to you) but at least he can see. He's down to 128 pounds now (from 180) but that has taken years. I don't know how he copes with it as well as he does but I do know that our daughter has a lot to do with it (and his little dog, Jude). Emily has given him a reason to get up and get dressed every morning (to take her to school) and a goal every afternoon (to get it together enough to pick her up). She's crazy about her dad. When she was little, they would spend afternoons plotting what to do to Mommy when she got home from work. He helped her with homework. He listened. They are very close. And she has brought me untold joy! I'm not sure that Dennis and I would have done as well as we have without her in our lives. I got to take her skiing (snowboarding for her), to movies, to see Grandma, etc. It got me out of the house and out of myself - every day.
She has grown up to be healthy and happy. She's very funny, like Dad. We will miss her when she moves away but we're also looking forward to it as much as any parents. Kids are a lot of work. But I have to say that she has only made our lives easier and more rewarding. I'm so sorry that you were unable to have children. I didn't have Emily until I was 40 so I can appreciate the ache.
I have been to England and Scotland a couple of times before (lived there for a few months when I was 22). We plan to go to London, York, the Cotswolds, Belfast, and Dublin. Skipping Stonehenge, Stratford-on-Avon, the channel, and lots of other stuff this time because we only have a few weeks. Dennis and I spent our honeymoon in the Lake District and Scotland.
Enjoy your trip to London in May! Try hard not to cancel it. Perhaps your husband's brother can help out while you're gone.
Kathi
Michelle
Sleep is always important to a care giver (and your patient, sorry this sounds too clinical) and it does make things easier, it makes your mind clearer and hopefully helps you relax at least a little bit. That break you got when Soren was with his brother does make a world of difference. It is so nice to have family and friends spend time with your spouse. It also gives them some insight to what you face everyday. It is ashame that you won't be able to go to Rome later in the month.
Kathi
I'm glad that Emily has been such a big help in such a difficult situation. Too many times a child does not understand what is going on and through no fault of their own becomes resentful of things.
Leslie is coping very well with the whole situation. 13 years ago when she got breast cancer we were devastated. She went through a lumpectomy and the removal of 7 lymph nodes. The Oncologist saw a lump in her pelvis that the Gynocologist had missed. That was removed (benign), plus a hysterectomy. Then the full radiation treatments Loss of hair) which she handled well. Radiation was 5 times a week for about six weeks. She was depressed at times but overall was good. Then 10 years later the breast cancer came back as bone cancer caused her hip to break and they inserted a rod in her hip. Her Chemo is less intense with the bone cancer and the radiation treatments were daily for only about 3 or 4 weeks. When she found out that she needed heart surgery to have the Aortic valve replaced (most likely caused by the radiation with the breast cancer) that upset her, but she was strong and I was amazed how good her attitude was. We just got home from a fitness supplier and we bought a Cardio-Strider. This is very much like one of the pieces of equipment she used at Cardio Rehab. I was impressed with her making the decision to buy it (sometimes things like this takes weeks). In a few days we will have the equipment and hopefully she (and I ) will start a program that will build our strength and endurance. Maybe we will both lose a little bit of the weight we have put on through the inactivity. Overall Leslie in a good frame of mind and overall decent health. She can travel, she is driving more and she is become more active around the house. I no longer have to help her shower and dry off or do most of the cooking (okay some cooking and running out for take out stuff) or drive her everywhere. An important thing to me is that she recognizes what I have helped her with over the years and she tells me she appreciates. That does mean the world to me.
Wow, that was a lot for me. By the way One of my boys lives in San Diego and the other one is abnorth of there in Menifee.
I think this place does open me up. THANK YOU
Walt
Walt,
Wow! I had no idea what you'd been through and for so long. I'm glad that Leslie is doing well and participating in life. It's nice that you're both on an exercise binge together. It's always easier to break bad habits when there's someone else to commiserate with :-)
I never imagined Emily as resentful. I think from her point of view, she had a great childhood. She has 2 parents - one at home. We have been able to provide everything she needs and she is well loved. She's very close to both of us. When she was really young, she was not aware of how ill her dad was. She knows now and we don't hide anything from her. It's funny but I don't feel the least bit sorry for her nor for myself. She has a great daddy who is attentive to her. Her parents are happily married and there is a lot of joy in our house. I don't think she'd trade us for healthier or younger parents. I suppose you'd have to ask her.
Things are not now and never were perfect, of course. Or easy. Dennis and Emily argue a lot. All normal family stuff, I think. What makes us different is that we live with a level of anxiety about Dennis' illness. Neither Em nor I can imagine life without him. We talk about it once in a while but mostly we stick with one day at a time. Fifteen good years have passed that way. We're grateful for every one (well, OK, the first couple of years we simply endured).
When he has been ill every day for many weeks (fever, vomiting, weak, in a lot of pain), he tells me that he wants the pain to end and that he's ready to go. I have learned to accept that and to sympathize. I'm sure I'd feel the same way. He has a DNR (do not resusitate) order which I hope I can honor if I'm ever faced with such a dreadful decision. But he's not focused on that. He's focused on life. Emily is aware of the DNR but she is a little less accepting of it. I think, like most young people, she sees it as a long way off, or maybe never. Bless her.
Kathi
Kathi
It sounds like you have had a good family life even through all the stress and heartache.
Walt
Hello Walt and Kathi
A nice Saturday to the both of you. I hope your week ended on a positive note. Mine was good enough, I got a little praise from my psychologist on Thursday, which was nice. She is a bit of a hard-noser which fits perfect with me for our sessions, but I was very happy to hear the unexpected praise. She said I was very resourceful and good at trying to better my situation and understand it as well, I am good at coping in extreme situations and take a fight stance and not a run-away stance. I do know all this, but it is good to hear from a relative stranger. So that will go a while with me which is nice.
Sometimes I wonder if we are the only ones out there on this forum? Do you both ever go to the other topics and reply there? I guess I am too grateful and satisfied on this forum string here so I do not need to go to another spot. Do any of you use/participate on other forums out there online? Do you get support, inspiration or help other places? I just bought (recommended by KarenS from this forum a while back: The Caregiving Wife's Handbook: Caring for Your Seriously Ill Husband, Caring for Yourself - it will arrive sometime next week. I am glad to hear that it is not a specific "for women only" book and got fantastic recommendations on Amazon. Have either of you read it? I am also looking forward to what I have read the immense amount of "matter-of-fact-ness" about it, and how to deal with certain situations. Please let me know if you have read it and what your opinion is on the book. On another note, I am so glad to read that we all get something nice out of this, I know I do and opening up never hurt. So nice to have others in the same caregiver boat around and to hear how they are coping.
I had a couple of questions for you when you both get the time: how did/do you deal with frustration regarding family members and their lack of helping (if any of you have experienced this). I am a bit taken aback by how little my husband's family offers to help or do anything. I am well aware of the fact that they have no way of fathoming the depth and severity of it all, but I am quite angered that no one offers to do anything, and this is the immediate family. I do not say anything, but am quite frustrated about it.
I have started talking to Soren about the necessity to downsize (our apartment) in the future. We have three bedrooms (one is his music studio - he is a composer) and the other one is our bedroom and the other one we hardly use for guests. I think if we could save 300 dollars a month and get a 2 bedroom, that would be smart. He has not worked in 2 years now and I do not know if he will again. Have any of you needed to do this and should I mention that I also worry that if he died I would not be able to stay there as a factor of needing to move? It is all such a delicate subject. I am all for being honest, but I do not want to be tactless and putting more on his plate as is. But it is a factor for me. I worry alot about my future, my small pension so far, expenses and how I will cope financially in the future.
Another question, and this might be too personal and I totally respect if no one answers this. My husband is really feeling the effects of his failing kidneys. He is nauseated alot, eats so little, sleeps so much and tired all the time. (We are waiting for the Nephrology Dept to call us back so we can make an appt to get the blood tests we know are going to say "time for dialysis" and start that whole phase). During the night he is up and about alot and it wakes me often. We sleep so bad together now, like each our energies wake each other all the time. Which is no good for me as I go to work every day and have to make the daily things work out - shopping, cleaning, pay the bills, make food, drive the car etc etc. Anyway, is it normal that people in these situations (chronically ill and spouse) start sleeping in separate rooms? To make the next day doable? I feel like as the days go by, we are losing more and more of husband and wife and more caregiver and patient relationship and it is so hard. How to tackle this?
How do you deal with sleep problems if you have any? I am so exhausted every day that I have no problem falling asleep, but wake up for 1-2 hours during the middle of the night where my mind goes through a myriad of different scenarios, frustrations, fear, desperation, and I think I am in a bit of mourning too of my life, is this normal or does it ease up after some time? Sometimes I feel like that if a stranger came up to me and gave me a hug and told me it was going to be all right and everything was OK, I think I would disintegrate into a million pieces and fall apart. We humans have such a strength in us, I am amazed at what we can deal with and survive in many situations.
Please don't feel obligated to comment on all points, especially if any make you feel uncomfortable. Please feel free to share anything with me as well.
Wishing you both a nice Sat and Sun
Best wishes and much good energy
Michelle
Michelle
Those were nice compliments you got from the phsycologist. Be resourceful and not running away from the situation is a great praise.
Forums....it does seem like a very small forum. Some people seem to pop in for one or two entries and then disappear. There might be people reading then but not participating. I never joined a forum about breast or bone cancer, but I have looked at sites and read many of the entries. They seemed to be purely about the medical aspect (which is helpful) but not about how the person was actually doing. Here we not only talk about the medical situations our spouses have, we also talk about the feelings and pressures that both the spouse and care giver go through. I think we all go after the best medical assistance that we can get, but don't open up even to our families and close friends about the "overall" problems we go through. This forum seems to "allow" that or even encourages that. I am grateful for that.
I'll have to look into the book that KarenS suggested.
The part of the families and friends not taking a bigger roll seems to be a "normal" response. I don't know if it is that they are in some form of denial and if they had a bigger roll to play they would see how things really are. In my case I know Leslie's family cares, but they don't make much of an effort to even visit. We see them mostly at family gathering or when Lesle and I are helping her sister and they visit her. It would be helpful at times to have someone help with a doctor visit or just spend time visiting. Even now when Leslie is doing very well, if I'm in the other room and hear her sneeze or cough or hear an unusual noise I check on her. That hasn't stopped since the first time she needed help. She always says "I'm okay" but I still have to check. So if people came to visit alittle more it would ease some of that.
The downsizing dilemma. I am at a loss of how you might present the downsizing to Soren. The money side is sensible and logical, but the idea to Soren that he would be giving up his music studio is difficult unless you could convince him that in a two bedroom apartment the second bedroom could serve both as a studio and an as needed guest room. That is a tough situation. If it ends up where it is definitely a money situation than you would have to do it.
The bed question. At different times it was feasible for Leslie and I to sleep in the same bed. The lastest time is when she had the heart surgery and if I moved the bed it would hurt her. The first week after the surgery, I slept in my office chair next to bed becuse she needed help getting in and out of bed. It really wasn't too bad slepping that way. Of course now I fall asleep sitting in the chair at the computer. I moved from the chair to the couch and made sure she had a bell or something to wake me up if needed. So now I'm back in the bed and my restlessness awakens her at times and she wakes me up occassionally. So after al that, I quess what I am trying to say is...you both need to sleep. Depending on how much care your spouse needs during the night would (for me) determine where I slept. I hope that helps a little.
Sleep problems. My mind goes a mile a minute most of the time. This is true when I am awake or trying to sleep. At night I end up looking at the clock way to many times. One of the ways some people handle this problem is through meditaion. I don't mean sitting in a full Lotus position chanting, I mean just focusing on something more pleasant and relaxing while you are laying in bed. From the "counting sheep" to something like picturing the ocean waves breaking softly on the shore. I use self hypnosis. Just a light stage. I practice bowling in my mind if my brain is running all over the place. I just start bowling in my mind and hopefully before I finish the first game, I have actually fallen asleep.
A HUG. After reading the things that you write I don't think if a stranger came up to and gave you a hug you would fall to pieces. I think you are a very strong person. If there were a way to send one over the internet I would send one to everyone out there that needed one.
My prayers are with all of you.
Walt
Walt
I am so glad to read that Leslie is doing good, that must be a source of relief to you. It is so important. It must be so nice that she can get around and even drive. I wish Soren was able to get around too, it must really boost their self-esteem and sense of independence also.
Thank you for all your replies and latest input. Yes, I talked to Soren about the downsizing and that the 2nd bedroom would be his work space only and that future guests would have to stay at a hotel, that is just the way it is. I don't want him to feel he is being pushed out of his space and especially his work space. He agreed to that and we are making a list of what we want and what can work with (both money-wise and demand-wise). So that was positive.
I can see that the (lack of) family help is a usual occurance, unfortunately. I am starting to get a grip on the fact that unless you have tried being a care giver before, you have no idea how hard and demanding it is, it is just not imagineable. Very few step to help and I have to just get past that frustration.
I do actually meditate in bed right before I go to sleep and listen to a 25 minute session of a person talking that really helps me. I forget to do it, and I don't feel like doing it every night, but I need to do it more. It helps and I don't think I will ever be not having a mind going a 100 mph all the time while this is going on.
We are still on standby with the dialysis start up and waiting for the doctor call in. We need to get his latest blood tests taken and see where he is. But the poor guy is definately marked by it. He is so tired all the time, eats so little and has a lot of nausea. He falls asleep all the time just sitting on the couch. Very hard to watch as a loved one deteriorates in front of you and there is nothing you can do, it is going to take its course. I am starting to become aware of the changes that are taking place within me about how I deal with the situation and my understanding of this whole ordeal. It does not get easier I would say, but I have learned after 2 years not to be on HIGH-ALERT all the time. I am ever vigilant with everything, but not feeling the stress 100% of the time and MAX level. It spikes now, but my head will always be working.
Walt, anything nice planned for the week? What is the weather like over in your neck of the woods? Here winter has arrived and it is cold, will be even colder in the middle of the week. I don't mind, but the freezing of my bike gears on Gear 2 (of 6) was not fun for 4 days. I pedalled in 2nd grear because of the frost and that is hard in such a low gear. So my legs were on fire by the time I got to work. Hard to bike in a cold wind with an evil wind chill factor also. But good exercise.
Kathi, I also hope you are doing well and coping, my thoughts go out to you too.
Best wishes and have a wonderful day
Michelle
Hello. Sorry it has taken so long to respond. I don't do anything on weekends that doesn't need to be done, especially in the winter. I feel guilty about that, of course.
I have not read the book you and Karen mentioned. I'll have to give it a try.
Since kidney failure is also Dennis' primary illness (he also has COPD and a myriad of other conditions related to kidney failure), I can relate to Soren's state. Dennis must sleep at least 14 hours a day and vomiting is a constant problem. Dennis has managed to stay off of dialysis so far because of his outstanding nephrology care. But there are consequences, of course. Some people feel much better on dialysis, some don't. Perhaps Soren will find some relief in it. It might relieve the nausea anyway.
We have moved twice so far as a consequence of this. First, we moved to a much less expensive house which we loved very much (it's 100 years old). But it had 2 stories and Dennis often did not make it upstairs to the bedrooms for weeks at a time. And it was still too big. We moved again into a house with a main floor bedroom and bath. It's tiny but life is easier here. We are moving again to what was once our vacation home (on a lake). It's one level and very small but it lets Dennis fish and get out in the boat, which he loves. It's a long way from medical care, though. We can't move there until I retire. At the same time, we'll get a small place in Florida where we'll live in the winter. Each of these moves has made things easier. Financially, it simply had to be done. The only thing I'd recommend is to try to make the actual physical move as transparent to Soren as possible. It's extremely stressful and a lot of work to move. I used professionals to move us even though that cost money. It was worth it to us. And, of course, I dealt with all of the address changing stuff and made sure that he'd have cable TV and Internet working in the new house as soon as we arrived. The last thing out of the old house was his "nest", as we call it - his sofa with all of his things and the dog's blankets and stuff and that was the first thing moved into the new place.
Yes, Walt if correct, we need sleep. There have been times when we have slept separately for long periods and it still happens a couple of times a week. In our case, I go to bed early but he is often up half the night or even all night so he sleeps fitfully on the couch. After I leave in the morning, he'll sleep 6 or 7 hours in the bed, if he can. Yes, I have mourned the loss of regular intimacy but I try to concentrate on the moments we do share. I've never felt closer to him. There are many forms of intimacy. There can't be much that's more intimate than sharing this experience.
Sometimes his sleep schedule is so weird that he is up all night, sleeps part of the morning, and then falls asleep again when I get home from work. I hate that. I can't talk to him at all during those times - from my point of view, he's always asleep. We always end up having a "discussion" when it gets to that point and then he'll adjust his sleep schedule - turn off the TV at 10:00 and go to bed no matter how he feels. That lasts for a while and then it slips away again. C'est la vie.
I'm so glad to hear that you have a good phsychologist. Her compliment is well-founded. Hang in there.
My family is also pretty distant about this. They always ask how he is, etc., and make sympathetic noises but I think that Walt is right, they just can't take in the ratty details. They are sometimes distinctly UN-helpful and say dumb things. But I know they love us both. I think that denial is how they have chosen to cope. I know I acted in much the same way when my mother's husband became really ill. I called a lot, but I really didn't help with caretaking. I think they're reaction is normal and I love them all as much as I did before Dennis became ill.
The squirrel-cage thinking for me, at least, did get better after the first couple of years. It doesn't happen to me often any more. I can't really say why. Acceptance has something to do with it and knowing that no amount of it will help or change anything.
Kathi
It sounds like both of you have given the moving aspect a lot of thought. Michelle, the wayyou ae handling it with making the 2nd bedroom his work sounds like the best possible solution. Kathi, your'e idea of getting to the lake after you retire is great. I have been lucky without having to move. I have a small 3 bedroom rancher on the water that we bought in 1976. It was crowded after I got custody of my two boys from my first marriage when they were 7&8 years old. So everything (except washer and dryer) is on one floor. I haven't let Leslie go down to the basement in years because ever once in awhile she will get dizzy. So I ocassionally sneak the dark clothes in with the whites if it a small enough load. If need be later I will move them upstair. We never had a garage here, so I went (as a hobby) from working on cars to working on boats and motors.
The sleeping situations can cause frustration and tension. Right now my situation is "normal" with us both using the bed, but occasionally I end up somewhere else so Leslie can be more comfortable. She does doze off at times during the day or evening, but we a on a pretty regular routine. It does help overall.
I don't know what to suggest when it comes to the fact that the family doesn't participate more. It sounds like it is a common thread that we all have to deal with. I guess we have to do the best we can and hope they will eventually have an awareness of the total situation.
The weather here in New Jersey has been reasonable for winter. Only a few nights the water I leave outside for the cats (they are inside outside cats that stay in at night) was frozen solid. We just had a couple days of rain which caused flooding with the water coming about half way around the house. No damage just a little clean up.
Kathi, don't feel guilty for relaxing a little on weekends.
Michelle, you will have to keep those gears moving on the bike.
Peace
Walt
Our daughter has been sick for most of her winter break. I made her go to the doctor yesterday and she has pneumonia. They gave her antibiotics in case it's bacterial and told her to come back on Friday if she's not better. I'm sure she will be OK. But you both know what really worries me. If Dennis gets this illness it will not be good. That's just another thing that goes on in a home with a sick person. Dennis has had pneumonia and flu shots so he probably won't contract it. From my keyboard to God's ears.
She tries to stay away from him when she's sick but they are both home all day together. Dennis does seem to have caught the cold she had (that started this). With his COPD, the coughing is terrible but I don't think he has pneumonia. Crossing our fingers.
Walt, we, too, have had a very mild winter until this week. It hasn't been above zero for several days now but we're supposed to get a degree today (yes, just one degree but it's above zero). However, the wind chill is -35 so it's still really cold. We Minnesotans are supposed to be tough but I'm getting tired of dealing with cold.
Our daughter still lives with us. She goes to college just a few miles from where we live. She moved out for a year but she's back now. I think that she's afraid to leave Daddy. I don't think she's conscious of it, though. She just knows it's cheaper and she has her own comfortable space here. She has some anxiety issues (fear of flying, trains, crowds) but they have not stopped her from doing anything so far. I think that her anxiety may be related to her father's illness and unknown prognosis. She is very strong, though. I can hardly wait to see what she does with her life once she's graduated and on her own.
Kathi
It always is worrisome when someone immune system is compromised and you have to protect them from "normal" things. It makes it that much more difficult to get family and friends invovled. I've been asked if it was alright to visit Leslie, we were afraid we might unknowingly cuase her some type of illness. You do have to be careful.
Watching your children grow and become an adult and make good choices in life and careers can be very satisfying my older son went to the University of California San Diego and now works there as a computer engineer. My younger son is a charter plane pilot and travels all over the world. I couldn't be prouder to say they are my sons.
We had our first dusting of snow last night. I guess our winter really has started.
Walt
Hello both Kathi and Walt
Greetings to you both from the cold and far reaches of Scandinavia. It has been very cold here too! Winter has arrived last week and this morning I biked to work in a slightly driving snow. Not a blizzard, but felt like small pins on my face because of the wind chill factor. But alas, I made it my face was all red but alive (felt like I had an involuntary face lift :-) ) So there are a few inches on the ground outside. The cold cold streak is supposed to last throughout the weekend. Walt, you think I would have learned last time to get those gears done, but nope, it got cold outside again where my bike was and the gears got locked in first gear this time(!), I call that divine punishment for not heeding and listening to the weather report. ha ha. So I brought my bike in the elevator home last night and got it thawed out. But I could not bring it into my office this morning and outside it sits. I did remember to put it into 5th gear, so I can go down two, hopefully, but at least not bike in first for 3 miles.
I am sorry to hear that your daughter is sick, Kathi. I hope she gets over it quickly and that Dennis does not catch it. I send my fingers writing on keyboard to the heavens above too. There is always such a fine line when there is sickness around and then everybody is on their tippy-toes and doing their best to keep it under control. I hope also that you do not get it. I have not been sick since Spring last year (with food poisening). I hardly ever get sick but when I do, I go down hard.
Kathi, I am starting today with my husband and for the next three Thursdays (of 3 hours each) a course called (translated) Kidney School for those patients who will start on dialysis soon and their caregiver or spouse (or like me under one hat). So we all get the low-done on what there are of possibilites and how it will affect us etc etc. You have written that your husband is not on dialysis because of a good Nephrology team he has behind him. I might sound very very naive, for this I apologize, but why is he not on dialysis if he has so much nausea and tiredness and loses weight - is his GFR numbers moderate or low? Would that not help a little (as you write for most)? Are there certain factors that determine if he should or should not do dialysis? If you do not want to answer, that is totally OK. I am just wondering if there are other factors we should take into consideration as to NOT start dialysis.
I have been extremely busy lately getting everything done around the house for Soren and my own work and my own obligations. I can feel that even though I am so busy and still under an extreme amount of stress with everything I feel better in my head. I can feel that I am not on HIGH ALERT max % of the time. I am coping better with it all, even though it is not getting easier. I have eased up on my own control issues and tried not to fight it all so much. I attribute a lot of it to being able to talk to you all on this forum. For that I would like to thank you both very much. This forum has been a great sense of relief for me and I am grateful. Thank you for your words and insight - just logging on and being there.
Have a great wintry day both of you, I hear you on the coldness, I don't mind it, it is just hard to bike back and forth to work with a hard wind in the face.
Michelle
Emily seems much better today. Whew! She went back to school yesterday and did just fine. She was tired but happy. Dennis does not seem any worse so I think we've dodged this bullet.
Michelle, I'm no doctor so I'm not sure I can answer your questions accurately. But, I'll give it a try. Dennis' GFR is really low (20-ish) but not down to 15 (which is classic dialysis). His nephrologist uses the GFR as a guideline but she takes everything else into consideration as well. The thinking is that dialysis is really hard on the other organs and, unless transplant is anticipated, dialysis should be avoided if at all possible. He is preparing for it (arm exercises, etc.) but we hope to avoid it forever. As long as his kidneys continue to filter out poisons at least as well as dialysis would, he'll avoid it. He has a lot of neuropathy as a result of the failing kidneys but dialysis patients also suffer from that.
Your husband's kidneys are probably not functioning at all and dialysis will do a better job than his own kidneys are doing. When that happens, it's truly life-saving. Fortunately, Dennis and I haven't had to face that yet. I'm glad you have a support group in this with you.
Walt, your "kids" are certainly successful. I'm sure you are a great father and you have contributed to that, By the way, I am also a software engineer, like your oldest!
Kathi
I never realized the dialysis was so hard on the other organs and the entire body. The school for the patience and care givers sounds like a really good idea. Too many timespeople are going through these situations and are learning as they are going along. To know some of the things to expext or to look out for puts you steps ahead. Information is so important.
Michelle, I don' envy you riding your bike in those in those conditions, but a great idea to put it a higher gear when you get to work. I used to work at many different locations (up to 103 miles from home) and to carry a lot of tools and safety equipment, so a bike wouldn't work for me.
Kathi, I'm glad Emily is feeling better and that Dennis seems to have missed it.
I am very pround of my boys. I just wish they didn't live on the other side of the country.
Walt
Hello Walt and Kathi
I hope you both had a nice weekend and things are going in a forward and positive manner. I don't have much to report from over here. Been busy and just trying to keep my head above water. We went to Kidney School and even though I have read alot about Sorens situation, it was nice to be in an environment with professionals informing us about how things are, will be in the future and what we can expect. Soren was the worst off and the one closest to dialysis. Everyone there will be going into dialysis in the future and their numbers are below 25% functionality, Sorens is at about 14% max. But it was a good experience and we look forward to the next 2 times.
I am doing fine enough. I feel my head is a little bit more above water. It is still so hard, but I am getting better at coping in the whole things. It is still very much a roller coaster ride and I can go freefall all of a sudden but I guess I am getting better at adapting to the ups and downs. I am remembering to do things for myself and just taking the dog for at walk on a beautiful day in the sun and snow gives me a break and I can be in that moment with myself, the dog and nature and appreciate it. I don't use that time to think of things I need to get done or whatever. I am still on my stair-routine and I am biking in 5th gear. Ha ha!
I didn't have much to say this time. I just wanted to check in and wish you all a nice week. I hope Dennis, Leslie and Emily and boys out West are all healthy and doing good.
Michelle
Walt and Michelle,
Nothing is new at my home, either. Emily is back in school. She's a TA (Teaching Assistant) this semester which she seems to be enjoying.
I'm reading a book about caregiver/spouses (not the one you mentioned - it's not available for Kindle). It's had me thinking about caring for myself. I have always felt that I do that, in fact I've felt rather selfish about how well I do that. But, the book has made me realize, that, in many important ways I don't take care of myself at all. For example, I haven't been to a dentist since before Dennis got sick (so 17 to 20 years). I often don't get my hair cut for 6 months at a time. I don't care how it looks as long as it's clean. I no longer color it, either, so it just hangs there, gray and limp. And I no longer care enough about my weight and physical condition. I don't seem to have the mental energy for all of that. I guess I tell myself that when I retire, I'll get healthy again.
How do you guys manage to get off the couch when you have time off? I will get up to do a puzzle or to bake but for little else. We did go to a hockey game Friday night. Dennis loved it. I was just tired.
Kathi
Hi All,
It sounds like that Kidney school is very informative. That can be very helpful if you know what to expect as you go through the process. We used to take a neighbor to dialysis 3 times a week. She was in her mid 70's and did pretty well with the procedure. She passed away from other causes, but the dialysis definitely helped her.
It sounds like both of you are going through the typical situation of not taking your own care as seriously as necessary. I have gone through the same thing. I have eaten a ton (an exaggeration) of peanut butter and crackers and peanut butter and jelly sandwiches. It was the easiest thing for me to grab. I used to joke, if I wanted a meal I would have peanut butter and jelly sandwich and if I wanted a hot meal I would have peanut butter and jelly on toast. I have learned to do more cooking, more shopping and more generally around the house. I also realized that I had to stay healthy for Leslie because of the lack of a support system. I've had some help and I am very thankful for that.
It is great that Dennis was able to go to another hockey game. I'm sure that brightens his spirits.
Let's hear it for fifth gear. I hope that makes your trip a little easier.
I don't do as many projects as I used to do. I spend too much time on the computer, but I will probably redo a half bath this winter. I was always one to tinker.
My thoughts are with you.
Walt
We got Leslie a piece of exercise equipment. It is called a Cardio Strider. It is a cross between a stepper and a recombent bike. It is better for her because it is low impact and the rod in her hip can tolerate it. It has preprogrammed stuff and does both upper and lower body. She is doing very well with it and is using it twice a day. I'm on there too.
Hello Katherine
I think you might want to try a forum or thread for people that do this as a job, as a choice of a job. I am not trying to be rude or dismissive, I just think that you might get some different and also qualified answers to many of the questions you might have. This posting by me is only my point of view, I am not speaking for others, only from my point of view. I am in this situation with my husband who is very sick and has a limited time left here with me. I am not in this situation by my own choice as an opportunity. Plus being a spousal caregiver is different than being a caregiver by profession. I also have an entire different take on this situation that has a deeper emotional depth because he is my husband and I love him etc etc.
Unfortunately I don't think I would be in a position (or experienced enough) to give you any advice. The only thing I can say is that it is very important that you get all the advice and tools (not physical) necessary to cope with this situation and give this woman qualified and encompassing care. It is not a choice to be taken lightly, this is someone's life and whatever you do or how you are affects her situation.
I wish you the best and hope you find the advice you need out there.
Michelle
Hello Katherine,
There is no balance for me now as I'm basically living out of my car commuting directly from work to hospital. I have a pet sitter taking care of the cats. Someone comes by to mow the yard but thats it. Otherwise I've had to let everything else go. The gutters are growing plants, the bushes are too high, the car needs an oil change the list goes on and on. When I was caring for him at home though routines were what saved me. One small step outside the plan and and the house of cards that was my life crumbled. For housekeeping I followed "flylady". It worked and was easy to follow. For meals I did bulk cooking. Check out sites for once a month cooking or freezer meals. DH and I used to love to go out to the farms and pick berries. I'd can them, make preserves, syrups, chutneys etc to last the year. When we had to learn to live with kidney disease my biggest help was a site called Davita. It's a nation wide dyalisis center. They have an awesome meal planner. I put in the protien, potassium, sodium etc and it spit out a monthly meal plan for breakfast, lunch, dinner including snacks that met his needs/restrictions. It also gave the option of switching items if something wasn't to his liking. The meals were quick, easy, and he enjoyed them. I found quite a few recipes on pinterest as well.
I was considering getting my cna license to learn more about how to care for him. He's bigger than me so moving him to get dressed and put the mat behind him is a challange. I was hoping to learn techniques for leveraging to make it easier. Are you able to do it yourself? TI also read about a brain waiver program that may help pay family/friends to care for my husband. I though I may be able to take advantage of it if I had to take FMLA. Unfortunatly spouses are excluded in my state. Are you able to share how people are able to find resources to pay for help? I'm trying to avoid medicaid and placing him in a nursing home.
Hi All also
I laughed when I read Walt's reply. Boy do I know that one. I am a food lover big time and have a better appetite if I do not have to make it myself. These past couple of years have totally changed by desire to make food. I used to love to cook and make wonderful meals for our guests and took great pride in being quite OK in the kitchen. The past years have ended in me being a grilled cheese (and ham) sandwich afficionada. Either that or soup does great too. I just do not like making food (nor do I have the time) much more. I have good and not so good days when making food, because I always make food for Soren now and he does not have to live on those choices :-). I make him what he wants, mostly because he eats so little and such a small appetite now that I make sure he gets what he wants, not always what I want. Plus I have to make a lunch to take with me for work and I have lost interest in that too. I also think it has a lot to do with time. It would probably be different if I did not have to do so much when I got off work.
So Kathi, I so get it about not taking good enough care. I do make it to the dentist and doctor's, but should do more. I am only 46 and I got lots of grey hair. I should get it done more often, I should put on make up every day. For me being clean, and in clean and presentable clothes and just getting out is enough. I don't look like hell, but I don't think anyone says "Wow, she does a great job of putting herself together everyday" so I manage. But nothing fancy or time-consuming with me on that point. I wish I had the time and energy to do more, but I can see that that is not possible right now. I just have to get it together and get out the door every day. WIth regards to your having energy to get up and about. I need a better STOP button. I just keep going and need to listen to my body and self and stop, I usually just keep going. So it is all about finding a balance. But I must say, the doing more exercise does help, even in small amounts Kathi. I am only doing the stairs a couple times a day and walking a bit more but I can feel it. It is hard because I am so dang exhausted a lot of the time and sleep is not my friend, but I push myself to do it and can now see/feel small positive effects. I need to be stronger for myself and Soren and like Walt says, we need to be on top of our game to help others. I have no support system either as of yet.
Sounds great that Dennis got to catch the hockey game and I just checked out that Cardio Strider, I think Soren would benefit from one of those maybe once he gets started on dialysis and maybe gets a bit more energy. They look fantastic and do not look like they get locked in 5th gear, he he! Much good energy Walt on the tinkering, although making a ½ bath is not what I would consider "tinkering", I would call that construction and a major project. How great that you can do those kind of projects, I wish I was more productive and could build a ½ a bath!
Have a good one all of you
from the cold reaches of Scandinavia
Michelle
Hi Katherine and all
Katherine, the situation you are entering into is some what different than what most of us face. We are all spousal care givers who in addition to taking care of ours spouses and in some cases children also maintain a full time schedule. On that front this would be your job and from that point of view be maybe a little easier. A friend of mine had a similar job. She found that in addition to the patient care she was also running the household (paying bills, food shopping, doctor visits etc.) which she didn't fully expect. So depending how much this woman's family interacts with her might determine your roll in all aspects of her care. I think it is a very noble thing that you are going to do. There will most likely been some restrictions of who and/or when you could have visitors in the house. I hope all goes well with it and please stay on this forum so we can get your point of view on taking care of a non-family member full time.
I'm 70 and being retired really allows me flexibility in taking care of Leslie. I haven't had a physical in quite awhile. I know that should be one of my priorities. I think I'm afraid that if I found out I had some kind of problem I wouldn't be able to take care of Leslie as I do now.
The bathroom project is just a redo where I would paint redo the floor and replace the toilet with a chair hight toilet. I highly recommend these. They are taller and make it easier to get up and down. We redid the main bath a couple of years ago and put in grab bars, a chair hight toilet and a taller vanity (about 3" taller) and it has made things easier. Also added a handheld shower and a portable seat that Leslie uses.
The Cardio Slider has 20 diffent resistance levels and at times it feels like you are in the wrong gear.
Hello Walt and Kathi and others out there
I am a little interested as to where this will be posted. There is some kind of glitch on the site. I went to the last posting which was by Walt and there were no buttons to click to either REPLY to the posting or to post a new one. So I found this only opportunity to post and I have a feelibng it is on the first page. Hmmmm....
Kathi, I have thought about you many times, I hope you (and Dennis) are doing OK? It has been several days since we last "saw" you, my thoughts are with you. I hope to hear from you again. Walt, I have also thought about you and Leslie, how are you both holding up and how has the weather been where you are at? Are you both doing fine and in good shape? I wish you good conditions and safe roads etc. Let me know how you are doing when you get the time.
Been busy here. Going to Kidney School on the Thursdays. Soren is getting worse health-wise; he sleeps so much, is totally exhausted, gets nauseous and sick and feels terrible. We are waiting for the letter telling him that he will be expected to go to the hospital to get the fistula operated in so he can heal and then start dialysis. It is very hard being with him so sick and seeing my husband, a 53 year old man, walking around and laying sleeping all the time, utterly sick. We got a letter from the eye doctors telling us that they might, against all odds, improve his eyesight a minimal amount, but we should not expect it and he will be blind. He is almost blind right now, due to his diabetic retinopathy. When it rains it pours.
I am doing what I can to keep my head above water, but just barely. You know the days where you feel like you are just going through the motions to survive? That is me right now. But I am putting one foot in front of the other.
My thoughts are with you all.
Michelle
Hello. I just found this site and have been trying to read up where I can. I seem to share some similar circumstances and I appreciate those that have shared their experiences. Its been difficult for me. Mostly I'm very very tired today and still in reaseach/fight mode. At some points I've been so distraught and my only comfort was a warm blanket and a purring kitty. I don't know where I'd be without my furry babies as I don't see much of a life going forward.
Caregiving for my husband came on slowly. So slowly I took it in stride and was able to be nimble and adjust. A work related back injury reduced us to one income. We got by for many years. It was painful but the mobility issues progressed slowly and we stayed one step ahead of it. Fast forward to 2 years ago. Chronic Kidney diesase. Panic. Learned. We were able to bring back his kidney function (only has one kidney) by watching his diet and being careful of the meds he took. The Dr was so impressed with the recovery. We went from a 18 GFR to 50-60 GFR. He said if we keep doing what were doing his kidney will outlast him. I was feeling quite proud. Next up cancer. The feeling of hearing that is like no other. I couldnt function for days. I was at work when the Dr told me. I had to leave. I couldn't continue. How would I tell him he had cancer and his family? How could Drs tell me that this is the "good cancer"? Cancer is never good. I was told it grows so slowly that no one dies of it. Something else will before that. Again research, learn. We managed. We watched and waited. In June the oncologist suggested it was time to treat. Panic. Research. Early intervention has not been shown to increase quality or longivity of life so timing is important. We traveled from Fl to Houston to MD Anderson which specialized in CLL. Do you remember the storm and flooding they had when Houston was under water? Yup. Thats the day we were there. They did not recommend treatment yet so we felt we dodged another blow.
Moving forward to August was when our world was turned upside down. A painful headache dr thought was about to be shingles became something more. A few weeks and a failed transfer in the house brought us to the ER followed by admission. He rapidly declined. On my birthday he told the nurse for the first time he didn't know who I was. I held it together until I left the room. He continued to decline to the point he was nonresponsive. I never left him at that hospital. Fortunatly I was prepared with a hospital go bag with food/clothes etc. Multiple specialists were called in all with differing opionions. The final was that it was a uti that when resolved he would come back or it was some type on ensephalitis. They released him to an LTAC hospital and gave up on him. They even canceled the tests without telling me. A couple months later with a new care team we got the news. Nontramatic brain injury due to the infection Valley Fever. Finally we knew our enemy. They got him on the right meds but the prognosis was very poor. He was still nonresponsive.
Many were telling me to give up. One Dr told me "everyone has an expiration date". Another Dr upon meeting me for the first time told me my husband "must have been a vigirous man to have you for a wife" (he's much older than me), and proceeded to go into DNR suggestions. The Infectious Disease Dr at the first hospital did not support any life saving measures. The nurses gave up on him. His kids who rarely visited were telling me we'll support whatever you decide. I felt the weight of the world. Chest pains, inability to eat, I got lost in hall ways and on the road when I had to return to work. I had to leave work hysterical and bail out on my co workers when he took turns for the worse and was in distress. All everyone else could see was the multiple comorbidity issues and his age. None could see what fighters we are.
Currently we made it to an Acute rehab hospital on Friday that specializes in brain injuries. There are 10 in FL. What a fight that was to make that happen. He is now able to talk and is beginning to eat. He is total care basically trapped in his body. I travel 116 miles each way from work to the hospital to participate in the therapy. They are teaching me how to use a hoyer lift and the other skills I will needs to learn to care for him if they allow me to take him home. Unfortunatly I was bluntly told from his daughter I can expect no assistance whatsoever from them reguarding his care at home. This is a huge road block. I have to work. He cant be left alone. I prayed for their souls. They took care of their mother through her cancer. Shes helped friends when they lost a loved one. She invited a member of her Corvette club into her home and did hospice care for him as well as settled his estate. She offered to take in her grandmother who is 89 and going blind into her home for 24/7 care yet she could not visit 10 nights a month even if I took in her grandmother as well so the grandmother could keep her Drs and be close to her son so I could bring her father home. All I asked for was time and love for her father. I would do all the heavy work. I do not need money from them. Just time and love. She suggested I put an ad in the paper for a retired person ... a stranger...to come sit with him. I can't afford to pay someone. Medical bill are all covered almost 100% but custodial care is very limited in my insurance policy.
I'm taking a breather today. I did not have enough time between my shift last night and today to make the trip to spend the night with him. I will go back after work tonight. I didnt sleep well. It was a good thing I came home though. I was not able to drive safely. Today will be easier. It was good to see the pet sitter is taking good care of our kitties. Hopefully the neighbors can help out for now. We still have a very long road and I can't afford the pet sitter much longer. He's been in a hospital since August. Still I fight. I stand on my own two feet alone in this journey with him trying to see the road ahead through the storm. It's raining today but tomorrow is another chance for the sun to shine.
Kim
Hi All
Kim you sound like an amazing woman who is going through worst things that could happen. From the comute to be with your husband, the having to change doctors and finding the right grop and diagnosis, to the family not wanting to help out in such a dire situation. Honestly, my heart goes out to you. I hope someone can suggest something that will make your life more simple and less taxing both physically and mentally.
New Jersey just got 22" of snow along with wind gusts to 65 mph. So I have been digging out. Shoveled enough to get the cars out and to give the cats a couple of paths that they can use. They are happier after spending yesterday in the house.
My neighbor used a Davita facility for dialysis and they treated her very nicely.
Michelle, the blindness has to be a huge hurtle. To have to learn to move around blind is something that I can't even imagine.
Research is always important like Kathi reading the care giver book. It is something that we all have to do and hope that we do not make any wrong turns along the way.
I'm going to relax so I can continue shoveling snow tomorrow.
Walt