SPOUSE CAREGIVERS

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zakiya1
Hello all.

It has been a a lil bit since I was on.  Today was a great day.  Sun shining and very warm for an April day.  It felt more like summer today which totally put me in a different mood.  I worked in my yard some.  I love to work in my flower beds.  Today I trimmed back my rose bushes.  The only thing that concerned me was the question of cutting them back too late.  Thought about it and decided to give it a shot.  They had a lot of dead stems that should be removed.  Truly love the smell and look of roses in the summer.  Noticed that a lot of my other plants are peeking up out of the ground.  Hope the pending cold spell don't harm them.

Hubby was doing well today.  He was not coughing and I could not hear the mucus in his throat.  That was great.  He smiled a lot today.  Excited about him feeling good and not coughing today.  Thankful for the small things.

House is still on the market.  Was having second thoughts about selling the house.  Talked to my children and they think it is a good idea to keep it on the market and move forward with plans to move to Florida.  My daughter and son are both looking for a place for hubby and me to move into.  This is hard to do when your finances are low and you are still waiting for your house to sell.  But, today, I'm believing that things will work out.

Walt - I hope Leslie is handling her chemo-shots well.  But, I sorry to hear your doctor is retiring.  I hope that you can find another doctor that you can build your trust in.  Thank you for your words of encouragement.

Kathi - I'm glad you are making your move to Florida.  I too checked into moving into the manufactured homes but also looked into regular 55 plus homes.  Yes, there are restrictions on how long visitors can stay, but the price for the 55 plus homes can't be beat.  I love the idea of community instead of living at a distance from neighbors.  For me this is important because I have been isolated for a very long time.  Thank you for your words of encouragement.

Michelle - I'm glad things are going well for you right now.  Hope you really enjoy your mini vacation time.  Also, glad you found a good home for your pet and that your pet is happy.  Thank you for your words of encouragement.

Caregiver33 - How are you doing?  I have not seen anything from you of late.  This journey we are on is not an easy journey.  As you can tell from all of the post, we are all going thru something in the process of taking care of our love ones.  It is a choice we make.  Please know we are not sitting in judgement of you.  We just know the consequences of some of our actions are not positive ones.    We are here for you.  This forum is here for you.  Please feel free to vent  any of your feelings here even when you feel like taking a drink.  Please start typing here until the desire leaves.  My prayers are with you.

Blessings to all.

 

 

kathiCares
You're back!

Thank goodness you're all back (except maybe Caregiver 33?).  I was starting to worry about all of you.  What could possibly have silence such a tight group?  I'm so relieved to hear from you again.

Walt, I too hope that Leslie is coping well with her chemo shots.  It must be difficult to lose your trusted doctor.  I know we'd hate to lose Dennis' nephrologist.  I'm sure the new doc will be just as qualified but, unfortunately, it will take some time to establish that kind of relationship again.  It seems like it's a good sign, though, if they think her heart is strong enough to proceed.

Zakiya1, I was so happy to hear your "sunny" side, literally.  I can see your beautiful roses in my mind.  I'm glad you could report a good day for hubby, too.  And the same day!  You have certainly earned a great day.  May there be many more.  I'm considering the 55+ communities for the same reason you are.  I'm looking forward to the "community".  I know 2 other people who are living in them and they are busy and have many friends there.  I'm pretty sure that Dennis will also find other men who are less than perfectly healthly that he can relate to especially.  We have been isolated too often and too long.  We will live there only winters.  We're not too worried about the visitor restriction.  Emily will be out on her own before I retire (in other words, I can't retire until she is on her own).  If she needs to stay with us for an extended period of time, we'll figure something out.  There's always the shack in the woods (you're correct, Michelle, it's not really a shack any more and it is on a beautiful lake that's 22 miles long).

Michelle, you're going to Hamburg!  I was in Hamburg 2 years ago and I love the city.  It's such a cool blend of historic and modern and there's a lot to do.  I hope you have a really good time there.  I'm glad you found a way to do this for yourself.  It will help both of you, I'm sure.  And I thought it was really sweet that you sent messages to friends to visit Soren while you're gone.

I understand what it's like to worry about finances.  It's my favorite hobby!  Retiring is taking a big risk financially.  For me, the process is giving me ulcers.  The very idea that, on that day, I will have all the money I'm ever going to have and there will be no more is truly frightening.  I had to stop obsessing about it and develop a modicum of faith that things really will be OK.  I could be wrong, of course.  Just kidding.  I guess that my belief that now is the time for Dennis and me is stronger than my belief that finanacial catastrophe is my destiny.  Whether I worry about it or not, I'm going to retire, so I'm choosing not to worry about it -- too much.

Kathi

WaltK
Hi All

It sounds like everyone is moving forward with the house hunting and the apartment hunting. That is great news.

Michelle    It sounds like the the classes for the blind is just what you need at this point in the journey. It is so helpful to get guidance from those who have experience in a certain area. It can save a tremendous amount of time if some things can be explained instead of having to learn everything by trial and error. I hope that you are not overwhelmed at work.

Zakiya1    I'm glad that you had a good day in your garden and that your husband was doing ok. It can really rejuvinate you when you get a chance to do something of your choice. Selling a house and moving can be quite a chore. It does sound like you have support in that endever.

Kathi    The community aspect of living is very nice and that is one of the best features of an over 55 community. It is something like this forum, where you all have something in common (age) and also life experience. That makes it much easier to communicate. I live in an area off a main highway with about 18 homes. Everyone knows each other and also watches out for each other. Being on the water we sometimes get people just sight seeing in our back yards or trying to launch canoes or kayaks. So we have to be careful that noone gets hurt even if they shouldn't be there.

Leslie   takes daily medication for both her heart and the bone cancer. She also gets a monthly chemo shot and a B12 shot. She handles them very well. It does sap some of her strength, but overall (mouth sores aside) she is doing well. My brother and his wife from Georgia is up the Pocono Mountains in Pennsylvania, so Leslie and I visited with for a couple of days. It was a nice short get away. About a 2 hour drive and we had a neighbor take care of the cats. I painted most of one wall in the bathroom so Leslie could decide if that was the color she wanted (I think she likes it). 

I hope everyone has sunshine in their lives.

Walt

 

 

 

MissHale
sunshine and the up and up

Hello All

It was so nice to ready everybody's rather cheerful posts. It seems like we are all in somewhat good places and coping with everything with a smile and with a surplus on our emotional/physical and spiritual accounts. This is nice and always needed.

Zakiya1, it was really nice to read about your day in the sunshine with the garden and your husband having a good day. It sure is nice, huh? Makes up for a lot and gives us the possibility to continue with more energy. I too could see the roses and feel the sun, I live in an apartment in the middle of Copenhagen, so the ideas of beautiful flowers and greenery around me would be wonderful, so I imagine how wonderful it is for you. I still hope that you are in a good space and doing good. I also hope your hubby is feeling better and doing good. I look forward to hearing about what you find out about where you want to live and what the final decision will be. I can so relate with the limited finance problematics and I am sure when you find a place and move and settle in, the dust settles and you can relax in a totally different way. Well, maybe I am projecting this on you, sorry if I am, but money worries take a lot of energy, unfortunately. I hope your and your family find a really good place for you and your husband to be. 

Walt, sounds like you and Leslie are doing good and that must have been nice to get away for a couple of days and be in a different environment and be out of the daily place. Sometimes you don't even have to go far to feel the difference. Always nice with a change of scenery and being with people you like. I hope Leslie is still doing good and her medications are not too hard on her. Please let us know when you get out on the water and tell us how that feels and what it is like.  I can tell I "live through others" a bit with regards to getting out. I miss being out in the nature and doing more outside stuff, not do-able with Soren anymore and the blindness. I hope the weather has been good over by you so you can get whatever projects you want to get done.

Kathi, you and I have things in common - worrying about money is one of them, and boy, is that a big one! :-).  Must be a woman thing, mostly, huh? You are way ahead of me though, you can still worry a bit, but you make your decisions and do not let the money issue rule your mind too much. I am working on it. I really hope you find a great community that appeals to both you and Dennis, I am sure it will happen. Such big steps and decisions you are making right now; retirement, your house on the lake and the community residens in another city/state - that is a lot to handle and deal with. You are empowered! I admire your strength and will strive to get past my own issues at some point and do likewise.(albeit not two places to live).

I and Soren are doing good. Soren started dialysis this past Friday, so now that is a reality and he will be going every Mon, Wedn and Friday from 4 pm to 8 pm. This is a big chunk of our time, but you cannot really do anything about it. He should be feeling more positive effects in a week or so, and hopefully the throwing up several times a day and general feeling of yuckyness will subside. He is taking it all in stride and is much more patient about everything than I am, I do admire that in him. I am still coping with everything that needs to be done and arranged in the future, but that is just the way it is. The apartment we looked at last weekend was good, but too small, there are certain criteria that has to be fulfilled and having room for closets is one of them. So, unfortunately that did not work out. We are leaving in 20 min, so I gotta go, to look at another place. Seems nice, but far from stores that Soren can walk to and we would probably have to invest in a lot of long shades/curtains, there are so many ground to ceiling windows, my mind is trying to figure that out price-wise (read: not possible). So onward we march. Been so busy with so many appointments etc etc. 

I wish you all a wonderful Sunday.

Much energy and greetings 

Michelle

 

 

kathiCares
Dialysis and apartment hunting

Michelle,

You're a wonder.  I don't know how you can work full time, find a new place to live (with many requirements to accommodate Soren), and take on dialysis!   And you sound so positive.  I love to hear that.  My house hunting is very leisurely since I don't really care when it happens and I don't have many requirements.  I do so hope that Soren feels better once he settles into dialysis.  What a relief it would be to him just to get through a day or two without throwing up.  It's funny what we hope for now.

Money, yes, the big worry.  I am very fortunate to be at the end of my career.  You are not.  I have saved pretty much all I'm going to be able to save (one more year).  In the US, anyway, illness is VERY expensive.  Dennis' medications alone come to more than our mortgage payment.  It has seemed impossible to save money for retirement while raising a child and incurring such outrageous medical expenses.  But I have always managed to save at least what my employer matches (in a 401K) and a little more for college, and I pretend the money never existed so that I'm not tempted to borrow against it or something.  And, we have moved twice to smaller, less expensive houses since he became ill.   You just do what you can.  And I think it will be enough.  I have to say that my choice of career was a lucky one so I've always been paid pretty well.  I'm grateful for that.

Walt, your few days hiatus sounds wonderful.  It can make such a difference to just get out in the real world together.  It sounds like you enjoyed yourselves.  I'm glad.  And the bathroom may get painted yet!  your neighborhood sounds idyllic.  Our lakes are still frozen and it hasn't been above freezing for many days but we're supposed to get warmer weather this weekend.  Mid-April is the usual time for the ice to start to break.  My winter blues usually break.along with it.  Crossing my fingers.  I've been so lazy.

Dennis has had another bad week.  As Michelle calls it, general yuckiness.  After 16 years, it's still hard to watch.  But I'm sure he'll come around again in a day or two.  That's the normal pattern.  I baked his favorite cookies this weekend but he didn't eat many of them (usually he eats them a dozen at a time).  He was down to 122 pounds but has gained back 3 (as of 2 weeks ago).  Let's hope he can hang on to them.

In less than a couple of months I will be in England and Ireland with my daughter!  I'm starting to get very excited.  I still feel a little guilty because Dennis can't join us but I know he wants us to go.  This one's for Emily.  Not that I won't thoroughly enjoy myself!

Our 25th wedding anniversary is coming up in a couple of weeks.  I confess that it looked to me like just one more big thing to do.  So I asked Dennis if he would take that on and he said yes!!!!  I think he's happy to do it.  Even if it ends up being pizza and a movie, I'll be happy.

Kathi

WaltK
Pizza and house hunting

Michelle and Kathi, it sounds like the two of you have very different needs in a home. Your timetables also sound quite different. Michelle, I do hope that you can find something that fits your needs and is close enough to stores and places (parks etc.) that will make things easier for both you and Soren. Kathi, you have the convience of time while you are looking for your next home. I'm sure that each one of you will find a way to get through this hurtle.  I've been lucky in that Leslie and I have been in this house for 40 years and we have just had to modify slightly over the years. It was a little small when my boys lived here, but now it is a good size all on one floor and can still be altered more if we required a wheel chair ramp or something else to make things easier.

The dialysis hopefully will clear up some of the everyday uncomfort.

Sometimes simple is better than invovled and a pizza and movie sound like a nice rlaxed time.

Everyome on here are in my thoughts.

Walt

 

MissHale
Hello Hello

Hello Everyone here

Here, here! In total agreement with Walt: all for pizza and simple is better. For the past two years on our anniversary I went to a good store and purchased some really good ingredients/food and was ready to prepare a spectacular dinner. Soren was admitted to the hospital for a minimum of at least 5 days - both anniversaries never happened. By the third year we decided to make fun of it, not do anything special (read: no planning of any sort), we joked about it alot and then we decided that if he was home by 4 pm on our anniversary we would order out. Pizza, sushi, whatever - just cheap and simple and with big smiles. We toasted each other in cola and laughed in the face of irony. I wish you and Dennis a wonderful evening and day and I toast you from abroad. I have never been a huge romantic and I always forget our anniversary (Soren is good with flowers and remembering all the details....) so for me it is a reminder day to stop up, look him in the eyes, tell him I love him and let's take on another decade :-). I am only pleased more than you can imagine that our goals are getting something good to eat (pizza is great!) and having a nice talk at dinner and then watching a movie (which we cannot do anymore because he is blind), but we will figure something out next time.

I am really looking forward to finding our new space, going smaller and getting settled in - whenever that might happen. Hopefully sooner than later. I still buy a lottery ticket a couple times a mont (I will always be a big dreamer- if I won big time, off we would move to Santa Rosa, California). Until then, I am at the daily grind :-) I really look forward to getting this phase done with because it takes up so much of my time and I am alone doing it. It will work out at some point.

I have been so busy and I need at least 4 more hours a day, it is like life has sped up dramatically and I am running full-throttle. I need to bring it down a notch, but do not quite know how. I can organize myself out of any free time, just to get things done on my TO-DO List. I am hoping that my trip to Hamburg on Friday gets me to slow down and then start taking it easy.

I hope everyone is doing ok out there and things are going in a forward manner. I wish you all a great day and you are in my thoughts.

best wishes

Michelle

kathiCares
The sun finally came out

Hello all!

We had a beautiful weekend here and I'm told the ice is breaking on our lake.  Saturday was my 62nd birthday.  Wonderful day.  Dennis made me home-made lasagne and angel food cake (my favorite).  Very sweet of him.  I painted the kitchen and back hall.  That means I finally got off my winter couch and did something productive!  I love Spring!  Dennis was well all weekend, too.

Technically, I'm old enough now to retire (I can collect Social Security).  That's a relief but I think I'll hold out another year while we fix up our house to sell (hence the painting) and complete the lake home renovations.  And, of course, Emily is still in school and living with us.  I'd like to see her employed and in her own place before we abandon her and this town.

Michelle, your anniversaries describe our lives so well!  As John Lennon said, "Life is what happens while you're busy making other plans".  And the fact that you've made them into your little inside joke is delightful.  Love can do that - change something bad into something sweet.

How was Hamburg?  I hope it was the mini-vacation you hoped for  I'm so glad you did this for yourself.  How did Soren fare in your absence?  I'll bet he was just fine.  I hope the diaiysis is going well for him.

Walt, hello to you and Leslie.  I hope you are well and happy.

Kathi

WaltK
Melting ice

Hello Ladies,

Happy birthday and may the ice disappear quickly. It warms my heart that Dennis had a good weekend and I hope the good days continue.

The spring does inspirer you to do things. The docks are in the water, the boat is almost ready, just a few more things to do on it. I have to go to Pittsburgh for three days of bowling and I decided to not put the boat in the water until I get back. Pressure washed some of the house yesterday and just came in from working on my truck which was acting up. I might have figured out the problem. I'll find out when I test it later.

I hope that Soren's dialysis is going well and eliminating some of his daily problems. I'm sure the two of you will find the right place to live. Have fun in Hamburg.

Leslie and I are off to the Oncologist in a few minutes. We found three red lumps under her arm and we are hoping it is reaction to the meds like the mouth sore was. On a sad note, my son and his wife just lost a baby after being pregnant four and a half months.

Let's hope for good days ahead.

Walt

WaltK
Red lumps

Everything is fine with the RED LUMPS definitely NOT CANCER.

Walt

kathiCares
Leslie

Walt, what good news after such a scare.  Definitely not cancer.  Sweet words, indeed.

I'm sorry to hear about your son's family's loss.  I lost 3 pregnancies myself but did finally have a healthy baby when I was 40.  I wish them peace.  4 1/2 months is a long time to dream and grow attached.

Kathi

WaltK
Thanks

The words NOT CANCER are definitely music to my ears.

My first wife (my son's mother) also lost our first one but after a much shorter time. It is always hard. I'm sorry for what you went through.

Walt

 

MissHale
Not being very consistent - me that is

Hello Walt and Kathi

Walt: so happy to hear that your Leslie is doing fine and there was no sign of cancer - big relief. I am so happy for both of you. Did you already go on your bowling trip? Was it good? Did Leslie do fine with you away? Are you doing good? I am sorry to hear about your son and his wife's loss of a baby, I can't even imagine how hard that must be. I am sending you and Leslie many good thoughts from way over here.

Kathi: Happy 62nd! Sounds like you had a good day and yummy yummy with the Angel Food cake, love it too. Sounds like you got your plan in place and it must be so wonderful to have that 1 year countdown, the days go by and all of a sudden you are done. The wait for the big release can be half of the enjoyment, knowing something good lies ahead. Keeping the job will help you financially with some wiggle-room I presume when finishing up the things that still need to be done. Not too long til your UK trip. Congratulations with your daughter's upcoming graduation. Proud times.

I have not been very consistent here and it is a mixture of things. I have been so ridiculously busy; I feel like I am flying by the seat of my pants. Which of course in itself quite stressful, resulting in me not getting enough sleep (about 5 hours max if I am lucky), which in turn affects my state of mind and as you both know I am sure, it all just bites its own tail constantly - not sleeping, too much stress, work, taking care of Soren and going through some emotional stuff. Not a good cocktail. I got back this past Monday (3 days ago) and the trip was fine enough, but to be honest I really needed the time off for just me. I went with a nice friend, but for me it ended up being more of a stress factor with her and I regretted not going alone. She of course wanted to do a million things in no time and I realized when I got there I tried to relax and I was soooo tired, my body wanted to tucker out. We got there on Friday and on Sunday Soren called that he was terribly ill and the ambulance was coming to get him (!). I went again into fight mode in my body and could not relax until I got home late Monday. When his eye got operated on they put in some oil to stabilize the eye. The oil had moved and settled in a spot where it created pressure that was 4 times what an eye could take.

This all had to be ruled out before they came to this conclusion. He was throwing up non-stop and had a pain from the front of his head down the back of his neck. They had to rule out a brain tumor and other terrible stuff before figuring out that it was the oil. So he went to the hospital Sunday afternoon and I heard from him late Sunday night after a million tests that they found out and he was going to have an emergency eye operation early Monday (while I was on my way home by train from Hamburg).

So, I am just exhausted and having a hard time dealing with anything. I am back to crying on my bike ride to and from work. My state of mind is in the dumps. I am just so tired of constant sickness, blindness, the mess everyday in the apartment, having to take care of everything (I mean everything) and looking for an apartment and dealing with a crappy job. Does it ever end? I wish someone would come and take care of me; someone strong and decisive and just some time with no sickness, problems, stress and be the one in charge. I want to slip the reins and feel protected and like I matter. Oh Boy, I got on a roll here. I can feel that I do not want to see people socially and I am pulling back. I cannot force energy forth that I do not have, my eyes, heart and chest feel so heavy. Everything is right under the surface for me - feelings and emotions. I know I am not alone and I have good friends that love me and care, but I feel so lonely and separated from "normal life" - I am on the outside looking in.Will I ever be happy again? What is to become of it all? Is this as good as it will ever get? WIll he ever get somewhat well again? Will I ever experience having a relationship again and not a caregiver/patient relationship? His world fills so much for him that I can talk about what I need and how I feel, but he has no surplus to do anything about it. It is not bad intention, he does love me, I know that, he is just not capable of changing anything. I can't say I blame him; I have no idea what my world would be like having to deal with all that he has on his plate. But I am a human and I have shut off all my needs and wishes for over 2 years now. Something has to give, what do I do?

Well, that become a long rant, I apologize for the massive negativitiy. I know you both can read my words without taking it too far in. My friends would not understand, they want to and come with advice that is not feasible, as well-meant as it is.

I have to get back to work.

I really wish you both a nice day in your neck of the woods. My prayers are with you both.

Michelle

WaltK
Thanks

Thanks all for the thoughts of my son and his wife. Just got back from my bowling trip. Oh, well not a real good showing at this event this year, but had an enjoyable time. Leslie did well while I was gone and I had a neighbor check on her while I was away.

Michelle I hope things have calmed down somewhat since you got back. I know when I put things into words either by telling a friend how badly things are going or if I put it down on paper as you did it gives some relief. I know we all wish for a normal life, but right now we just have to take joy in the liitle things that are normal. I wish I could reach across the ocean and help in some way.

Kathi, I hope things are going ok. My thoughts and prayers are with both of you.

Walt

 

 

kathiCares
Monday

Good morning, Walt and Michelle,

As always, good to read your messages.

Michelle, my heart goes out to you. I wish I could give you a hug.  Or send you the guardian angel you dream of. During my life, I've had many times thought the same thing.  When is someone going to take care of me?  Support me?  It's painful to remember.  When I met Dennis, he had an ex-from-hell who had him constantly in court and had run up unbelievable debt and then filed bankruptcy.  Oh, the pain.  Anyway, needless to say, he wasn't able to contribute to OUR family financially.  The deal for me was that, when I'm fifty and Emily is ten, I'd retire and stay home with our precious daughter.  Well, when we were 46, he got sick.  I remember those first couple of years how I resented being forced into a situation that was unfair.  And feeling very selfish about my feelings.  Not only did I not get to retire, but HE got to stay home with Emily summers and pick her up from school every day, etc.  I was screaming mad half the time and depressed the other half.  I haven't really been able to talk about that because who wants to hear about "poor me" when Dennis is clearly the one who is suffering.  Well, I was suffering, too.  And so are you.  And I'm sorry.

Meanwhile, I have kept going to work and caretaking and being Mom and somehow I got here.  The resentment did pass.  I did, as Walt said, start to live for the small ordinary joys of life.  Nothing conscious happened.  It was gradual.  But now I'm still working, etc., but I'm actually grateful that I can work and provide for my family.  I don't know how that happened, but it did.  I hope you find some peace with this.

I don't dream about a guardian angel any longer, either.  I don't need one.  I can take care of myself.  I don't say that while gritting my teeth with determination.  It's a quiet knowledge that it's true.  I am not worried about my life as it is.  I admit that I sometimes still get my knickers in a knot about a future alone, though (without Dennis).  I worry about feeling  lonely and unloved.  Pointless anxiety, I know, but real nonetheless.

I'm sorry that Soren had to endure yet another emergency.  How much can a guy take?  Is there any relief yet from the daily sickness since dialysis started?

As for you, young lady, you're going to have to find some way to get more sleep.  No one can live well without it.  My thoughts are with you every day.  Take care.

Kathi

WaltK
Poor me

I think that this is an excelent place to talk about the "poor me" experiences in our lives. I think we can to relate to them even if we have different situations and levels of situations. After I was devorced I was lucky enough to not have any problems of seeing my two boys. The hard part for me was telling Leslie that if she married me I was going to try my best to custody of them. She had no chilren but was okay with that. We did get custody 2 months after we got married. The real problem came after she quit her job to take care of the kids (I was fine with that) she decided she wanted a child of her own. I had had a vasectomy during my first marriage and that made for many tense "discussions" about our future. Eventually we opted to not have chilren and it worked out ok. Luckily my devorce didn't cause me dire finacial harm, but I did keep the house (paid her half the value) and needed to get a couple of guys to rent rooms so I could make the morgage payments. Things were difficult for a couple of years. I feel kind of lame relating this but I'm sure the two of you will understand that many things go on that even friends and family don't see and it is difficult to talk to them about them.

I hope Soren and Dennis are weathering the day to day problems and I hope that both of you are getting enough rest to recharge your batteries.

My thoughts are with you.

Walt

kathiCares
Small joys

Yesterday was our 25th anniversay (May the fourth be with you).  As I said, I left this one to Dennis to plan.  Well, when I got home last night, there were our best friends all dressed up and bearing flowers and champagne and Emily was all dressed up in a formal gown I made for her a few years ago and Dennis was dressed to the nines!  Then a limosine came by and took us to a fine restaurant and back again.  I had no idea.

We drank all the champagne, some wine and a few beers and we feasted.  Bless Dennis' heart.  He is so sweet.  It was a great and unforgettable night!  I'm looking forward to the next 25 years!

Kathi

WaltK
Small joys

That sounds like the best night that you could have asked for. That small joy turned into a HUGE JOY. My hat is off to Dennis.

Walt

 

kathiCares
Graduation

Boy, I'm not sounding like a long-suffering caregiver these days.  And that's great, of course.  At the moment, I don't feel like one, either.

Emily graduated from college on Saturday!  It was a wonderful day.  Very proud of her.  Trip to Europe is the next big thing on the agenda - not even 4 weeks away!

I hope you are well.  I'm on a roll.

Kathi

 

WaltK
Good things

Kathi, it is always great when things are going smoothly.  These are the some of the moments that you will teasure forever. Congratulations to Emily for her graduation. That is always a happy day. We are looking forward to hearing about the European trip. You are definitely on a roll.

I've been keeping busy doing yard work and getting the boats ready.  Leslie is a little more tired than normal, but still doing ok.

Michelle, I hope you are getting enough rest and eating properly to stay healthy. My thoughtsand prayers are with you.

Walt

 

MissHale
Such good news from you

WOW! Such a nice place to go to get good energy and happiness. I was very happy to read your posts and Kathi, you are really on a roll! So wonderful to read. I must say, Dennis did such a great thing for you (both) for the anniversary - you must have been spilling over with joy and happiness. He has the touch! Sound like you all had such a great evening - friends, a bit of champagne and good food, laughs and love, what more is there? Congratulations on your anniversary, all the best for many many years to come. And now Europe, what the heck!? Lovely, lovely and fantastic! Big time congrats regarding Emily and I wish you the most wonderful trip to the UK. 

Walt and Kathi, I wanted to take this moment to thank you for sharing your thoughts and stories in connection with me and my past mail. It meant a lot to me, and I need that input every once in a while to ground and get my nose out of the gravel and lifted up facing the outside world. Thank you both, and Walt, the story was not lame in any way. I so appreciate honesty and insight. Also as Walt mentions, that things can go on that neither friends or family see or understand or a privvy to. And yes, despite all situations and types and degrees of situations. 

Me, I leave for 4 days in London on Wednesday next week. With my friend Jane, much needed and hopefully no emergency surgery or the like :-). It will be good. I am the midst of looking all the time at apartments and finding them, trying to get times to see them, and so much time goes with this moving process and so many not so good apartments out there. I look forward to this getting done with and getting that checked off my list. One of the BIG things to get in order. Actually the biggest if you ask me. Must be a cheaper place then I can get a little more put away in my pension scheme. Do not have enough in that area right now.
Soren is doing much better with the dialysis, no sickness and a better feeling all around. He says he feels like he has burst out of the bubble of nausea and dizziness. So that is good. This all helps. I am still struggling with a lot of things and having to do so much, trying to get used to the blindness, it does take time.

I have to get back to work. I send my hellos, prayers and have a good Spring.

Best wishes

Michelle

WaltK
Good news

Michelle   The news that Soren is doing better on dialysis is the good news that we have been waiting to hear. That is wonderful. That has to ease your mind while you are away. I am so hoping that you have both a relaxing and fun filled trip. The apartment search has been taking so much out of you the trip might give you a chance to recharge a little.

My thoughts are with both of you.

Walt

kathiCares
Hello all

Michelle, the news about Soren is so great!  I know he still has plenty to deal with but at least not the sickness and nausea.  That has to make each day easier for him.

I hope you enjoy your London escapade.  Emily and I will be in London in just 3 weeks.  I'll be anxious to hear if you get any relaxation or relief from your hard slog.  It's difficult to "move down" to a less expensive place.  Hopefully, once you're in it, it will just be home and you won't think about what you used to have.  It has actually been a good thing for Dennis and me although it didn't seem like it at the time.  And, of course, funding your pension is important!

Dennis and I got out to buy new flooring for the lake place.  We'll have to install it ourselves (with help from my siblings) but it's click-together so it shouldn't be too strenuous.  I like the floor a lot.

We went to the lake to see the contractor last week.  I was not prepared for what we saw.  The place is gutted and what's exposed is poor construction and broken structural members that all have to be fixed.  Oh, yes, and all new wiring.  This is what I was aftraid of.  How much will this cost?  The contractor kept telling me how beautiful it will be and how the house will be safe, warm, and confortable when it's finished (all true).  But, I was overwhelmed.  I couldn't even really appreciate the vaulted ceilings.  So I'm back to panicking about money and questioning our decision to retire there.  I'm going to have to pull out all my tools to talk myself down from this.

Kathi

WaltK
Travel

I hope everyone's travel and travel plans are going well.

Kathi, it is such ashame that when you start redoing a house unexpected things come out of the blue. I hope the obstacles get resolved without too much hurt on the pocket book.

Michelle, when you get home from hopefully an enjoyable and restful trip the apartment hunting will be a fresh thing and it works out well.

The boat should be in the water in the next couple of days. The weather has been iffy, so there is no rush.

Walt

Donna J.
Donna J.'s picture
Hello. I joined tonight.

I don't really know my way around computers but I thought I'd take a shot and see if anyone is out there. Even if nobody sees this it's okay because I just need to talk to someone even if it's myself.

WaltK
Welcome

Hi Donna,

Welcome to this forum.

Right now there only appears to be you me and two other active users (Michelle and Kathi). We each have very different situations because of different illnesses and also different situations because of work and family participation. My wife (Leslie) has bone cancer that we are battling and she had heart surgery about eight months ago. She is actually doing pretty well. Sometimes there is pain and most of the time there is fatigue.

We talk about many things on here and we seem to open up to each other because we know many of the things that the others are going through or have gone. I think in general in some ways it is easier to talk on here then it is to talk to family or friends. So please join us and don't be afraid to rant and rave or discuss any subject. I've been dealing with Leslie's doctors for 14 years when she first got breast cancer. I have been lucky with the doctors we've had for treatments and diagnosis.

I hope that sheds some light about us. Sometimes it takes time for others to reply or post because of busy schedules.

So again welcome to the forum.

Walt

Theresab
I'm new on here also

My husband was in a motorcycle accident 16 month ago and his spinal cord was severed at t5. That means he is paralyzed from his nipples down. Right now I am depressed and feel very unloved. I feel like I am just the caregiver and no longer his wife. He has started getting more independent so I got a part time job. Sometimes instead of doing hid exercises or eating dinner her waits until I come home to take care of him. My depression is just getting worse because I feel trapped and manipulated.

 

DeniseC
I completely understand

Hi Teresa,

My husband was also paralyzed -  17 months ago due to an automobile accident.  His spinal cord was hyperextended.  His paralysis is from T3 down.  My husband also depends on me more than he should.  No matter who else is might be taking care of him, he says, "I'll wait until Denise gets home from work to do that".  

He goes through spells with his independence.  Sometimes he wants to do everything for himself (as much as possible) but there are some things that he should be doing that he just won't even attempt.  I keep telling myself that he is still adjusting to his limitations and that his exercises (balancing/transfers, etc.) and such will come more naturally as time goes on.  But sometimes it's like he's afraid to move.  

There are some days that he would absolutely work me to death doing things for him if I didn't say something about it.  He can be very demanding although I really don't think he realizes what he's doing.  I was his voice and advocate while he was in the hospital for three months and he depends on me for everything now.  He isn't physically strong enough yet to transfer and that limits what he can/can't do for himself.  Part of it is mental/emotional.  When he is able to get up in his chair and get out, he has a good attitude and jokes around - but it took him a while to get to that point.  This bed rest is really bringing him down and it feels like we are going to have to start over again once his medical issue has been resolved.    

I hope you are having better days.  Let me know how it's going.

 

Walt,

That sounds like a wonderful outing for you and Leslie.  I'm so happy for both of you.  We go to see the wound care doctor Monday and we are hoping and praying that she gives my husband the go ahead to start sitting up in his chair again - even if it's just for a few hours.  It will make all the difference in the world.  We will be able to get out again even if it's just to go out to eat or two a movie.  That will help both of us!  I think we will have the house to ourselves for a couple of days.  I am very thankful for our family who come to be with Dan during the week while I'm at work, but we are used to it being just the two of us (for 32 years now) and it will be good to have some quiet time - even if it's just for a day or two.  

I hope you all have a good weekend! My thoughts and prayers are with all of you!  

Denise

Theresab
Getting help Caregiver33

provide services for long term illnesses to try and keep the patient in the home if possible I've spent the night reading old post.  One piece of advice for "newbies" , meaning those of us finding our selves suddenly in the caregiver role: NETWORK. In the US every hospital has social workers who are supposed to help you navigate through care providers. The problem is we are so overwhelmed we don't know what to ask for. So talk to everyone. In my case it was the physical therapy department. Long Term Health Care is provided through Medicaid, not Medicare. Find out and apply for SSDI ASAP. Make the $200 appointment to see a reputable Disability Attorney. If you hear about a different treatment, ask about it. Medicaid, Medicare and private insurance will. I even networked and found a retired RN who came to the house a couple of times so I could get dressed up and "have a smoke break" ( it's a line from a country song) I don't drink or smoke but I got a break. And if you're not married or have children with your patient/lover, you can walk away because it's going to rip your guts out and restment and bitterness is worse.

Theresab

 

WaltK
Hi Theresab

Hi Theresa,

I'm sorry that you have to be in the position as caregiver. It can be extremely difficult at times. It does sound like you are on the right track of trying to find and use any and all sources that help your situation. I personally not familar with your situation. With the injury at the t5, does mean your husband can fully breathe on his own and have the majority use of his arms?

I think everyone who posted here has gone through the feeling of "just being a care giver" and no longer being a spouse. So many things change in both your life and your husbands life. Overall how is his attitude?  It makes it much more difficult on the care giver when the "patient" isn't trying to help themselves. When they don't continue with exercises or doing things that they are capable of doing, it adds to the care giver part and also the part that makes you feel depressed and unloved. I found that at no time my wife, Leslie, didn't love me she was just tired of the fight she was going through. After she got through times like that, I could tell that she really appreciated everything I was doing for her.

Do you have any kind of support group, meaning friends and family (not professionals) that are willing to help out and spend some time to give you a break where you can take that "smoke break"? They can be very helpful, but you might also have found out even though they are trying to help they can be a pain in the neck. Some people don't realise how dire the situation is or how it has affected both parties involved.

So again, welcome to the forum and please don't be afaid to rant and rave. Some of us feel it is easier to open up to the people in a forum like this than it is to open up to fiends or family. We have discussed many subjects.

Walt

MissHale
Sorry for being so absent

 

Hello Walt, Kathi and welcome Theresab

I am sorry it has been such a long time. Things have been so busy around here. I went to London to relax/get away for a couple of days, but 2 days before I left we got a new/smaller/cheaper (when the loan is paid off) and great apartment. We had to sign a bunch a papers, talk to the bank etc etc and I had to do everything because Soren cannot see, so it has been a ride for several weeks now. I had to read through a 30 page contract on my cell phone from the hotel in London, sign it, take a picture send it to the realtor, bank etc etc. So we are so grateful and happy, we get to take it over on June 15 and then it has to get fixed up a bit. It was a 94 year old woman who had lived there for 48 years! You can tell, so to say. Nothing has changed in 48 years, so it needs a lot of love. 
We also have to sell our current apartment and right now our seller comes every 2-3 days with people to see it, so it has to be clean and I can only do this after I get off work and get home (yes, still riding my bike, Walt :-) ). Anyway, I have thought about you all so many times and wanted to get on and write an update and say hello, and I have not had time. With this whole new thing going on, my work and back log from 5 vacation days, a bunch of things to do for Soren and getting our present apartment sold, there has been no extra hours. I wake up after 5 hours of sleep every night and just get up and right lists of what needs to be done in the new apartment, who/what/where/when/how to contact and right now it is good (albeit a bit stressful) because there has finally been a positive change, but I really need some sleep....

I will get back to you all as soon as I can, I promise, you have been in my thoughts and heart, welcome Theresab, I wish I had more time to write to you also, I will later. As Walt writes, this is a good place and we have all been in many of the same Caregiver situations. Kathi is here also, going to the UK soon with her daughter, so she might not be present for a bit, who knows. you can read alot of our earlier posts, that is how I started. I started at the very beginning of this thread with Karens postings and made my way forward til I got the courage and energy to write. I am so grateful I found this site and to have been able to write with Walt and Kathi, totally helped me in so many ways. 

Take care all of you and I will write later.

Best wishes

Michelle

doingmybest
Hi I'm new

Just found this website.  My husband was diagnosed with Multiple Myeloma 4 1/2 years ago.  He had a stem cell transpland but relapsed after 18 months.  Eighteen months ago he was diagnosed with melanoma.  The melanoma has metastasized to his lungs and liver.  The outlook is grim.

I'm writing to see if anyone has gone through what I'm experiencing and how to deal with it...

I feel like I have been a strong, great caregiver up until four days ago.  For no apparent reason, I woke up, started crying (hysterically) and this lasted three days.  I called supportive friends and family, but nothing helped.  I have never had a meltdown like this.  I'm on day four and feeling only marginally better.  I feel like I can't get a grip on my emotions.  My husband and I only talk about day-to-day things.  I would give anything for a lot of hugs and some gratitude--some "connection."  I have asked for one hug a day with no results.  Understandably, he is dealing with his own issues, and doesn't need me to nag or demand.

What's hard is that everything is geared for the patient.  I have found very minimal support for caregivers.  I have an appointment with a therapist next week.  I'm hoping we can find a way out of this paralizing sadness.

I know this is rambling, but it's hard to put coherent thoughts together these days.  Any thoughts from any of you would be appreciated.  Thanks.

 

WaltK
Welcome and welcome back

Welcome, doingmybest, let me first address the "daily hug", I also went through the exact same thing with my wife, Leslie. I wanted a daily hug and it was not forth coming. It was not because she doesn't love me it was "after discussion" she wasn't feeling good about herself. So what I did was strived to hold her hand everyday. That worked and it has now developed into at least one hug a day (my goal).  I'm just surprised that someone else has the same goal.  I hope that might give you some idea how to reach your goal and also a possible path to take.

I haven't had to deal with the forms of cancer that your husband has.  I'm retired so my available time situation is different from others on this forum. Michelle is not only busy caring for her husband, but also working and selling her home. Kathi beside taking care of her husband is working, her daughter just graduated from college and she is involved remodeling (and rebuiling) a lake home they will retire into.

We have all gone through the depression stages of being a care giver. Sometimes writing about your feeling lightens the the heart a little.

We are here t listen to what ever you have to say, whether it is a rant or rave or just opening up and puting your feeling on paper. I have discussed things on this forum that I haven't discussed with family or friends.

So again welcome to the forum.

Michelle

It is great that the search for for a new home is over. Lots of luck selling your present place. I hope Soren did okay while you were away. It sounds like the much needed time away was a great success. I'm glad the weather is warming up for your bike rides to and from work. Hopefully the sleep will come soon.

All of you are in my thoughts.

Walt

kathiCares
Hello and welcome

Welcome Theresab and doingmybest!  I hope you find some comfort here.  I know I have.

Walt, you've been holding down the fort for us for a week or so and you do it so well.  I sometimes forget that you've been doing this for over 14 years.  My situation is now at 16 years.  I find it interesting that we're both pretty contented souls.  Somehow through all of this, I think we may have found a degree of acceptance.  And, of course, we're both happily married.

Michelle, I've been thinking about you all the time and I'm glad to see you're back.  Glad to hear that at least one of your stressors will be coming to an end soon.  A new apartment might be a nice distraction once you've sold yours and moved in.  You can make it the way you want it.  And maybe get some SLEEP in it.  You can't go on without sleep.

Theresa, I think that Walt said it so well.  Being a caregiver is difficult but you're doing the right thing in looking for help anywhere and everywhere that you can find it.  I'm glad you've been able to get a part time job.  Work can actually be a helpful, productive and "normal" addition to our busy lives.  It's a distraction with benefits.

Doingmybest, what you describe sounds like depression.  Who wouldn't be sad in your situation?  I'm glad you're seeing someone soon.  I've been there.  You CAN come out the other side and feel normal again.  I hope that once you find a way to cope, you'll find some joy and comfort in your life.  You're right when you say that there is not a lot of help for caregivers.  That's why we're here.  Some of the most successful groups are self-help groups.  After all, we're the ones who "get it".

My lake home is still a mess (no floors, ceilings, or wallboard) but I can see the light at the end of the tunnel now.  The contractor has begun to build back some of the structure and I can now clearly visualize  the vaulted ceilings and loft.  It's going to be beautiful -- some day -- far in the future (or so it seems).

Emily (my 22-year-old-recent-college-graduate daughter) and I are off to Europe in just a week.  I can hardly contain my excitement.  Both of us, though, are so sad for Dennis (hubby and daddy) that he can't join us.  He loved to travel.  We went to England on our honeymoon all those years ago.  He says he's fine with this and he very much wants us to go.  The extended family will come and visit and find things for him to do.  I hope they don't irritate him, haha.  We will miss him while we're gone (2 weeks).  I'll be thinking about him every minute and skyping every night.

Kathi

WaltK
Short note

Hi all

Thinking of all of you. Leslie has been doing pretty well. The biggest problem is her being tired most of the time and keeping the side effects of the medications in check. She took a ride in the boat today. Had a lttle problem getting off and on because of the rod in her leg. She enjoyed it and then we spent most of the afternoon sitting outback watching the wildlife and boats going by.

My thoughts are with all of you and my thoughts are with the veterans who make this a good world.

Walt

 

MissHale
Hope it was a good Memorial Day

 

Hello All

Walt, I must say, you and Leslie's boating around and just relaxing and watching people sounded wonderful. It must be so nice to get out on the water, listen to the water lapping against the boat, feeling the warmth in weather, enjoying each other's company, taking time to pause/reflect on life, saying an inner thanks to all the veterans who YES, make this a good place to live and most of all appreciating life. As you can read, I would love to do that too :-) I am sorry Leslie has been tired and having to deal with her medications to have everything be OK. I hope she is feeling better for each day or is the situation just there as of right now? I hope you both are doing ok and I send you many thoughts and prayers. I know I have said it before, but you are going to have to take it and accept it again. I so admire your posts, thoughts, caring, ideas and help to people here, me so much included. Thank you so much for putting in your 2 cents (for lack of a better word, and even though it is SO much more!), You take the time to write on this FORUM and every time I read one of your posts I realize how much you contribute on many levels and I just want to thank you for that. I know I might be a bit gushy for your liking right now, but I also do believe in letting people know if they are appreciated, liked, admired what ever, the list is long, but I do make a point of telling the people I know my mind. If you do not have anything good to say, keep it to yourself, if you have something good to say, by all means let people know, it does make a difference.  I just read some of your postings while I was "out with life's hecticness" and I smiled so many times and thought you were such a good writer. 

Kathi, you must be swirling around your upcoming trip with Emily. Or are you already across the sea on your wonderful adventure? Maybe so. From all that you have explained about Dennis, I am sure he is so happy for you both going on this trip. Of course he would love to be there with you, and I am sure he looks forward to the SKYPE so he can hear all the details I wish you both an AMAZING trip, may it be filled with wonderful experiences and so much love and laughter. Looking forward to hearing about it when you get back. 

I hope there are many many new changes in the lake house when you get back. I am so glad you can see the light at the end of the tunnel. I cannot wait to get there myself and I haven't even started yet. I just want to move in, we get the keys in 2 weeks, so my redhead impatience is showing through here.

It is 06.30 am and I have to hop on my bike and get to work.

Have a wonderful day both of you, take care

Michelle

kathiCares
Just Tuesday

Have a wonderful day yourself, Michelle.  I hope bike riding is a little easier now with the warmer weather.

Walt, your Memorial Day sounds perfect.  The boat, nice weather and sitting outside, watching.  Our boat is not yet in the water since the lake home is currently uninhabitable.  We went up to see it again this past weekend.  There is progress but it's still bones (no drywall or anything).  The wiring has been replaced completely and the service upgraded. Impossibly expensive but at least it's safer now.

Emily and I leave on Saturnday.  VERY excited.  We return on the 18th.  I'm sure I won't be posting while in Britain / Ireland but I'll be thinking of you all!

Kathi

WaltK
Thanks

Michelle

Thank you for the kind words. It is nice to know that someone "hears" what I type. Only two weeks till you get the keys to the new place. That time will probably fly by on one hand while you are trying to pack and get things ready and at the same time drag on forever because you are looking forward to it. Keep on peddling that bike.

Kathi

It sounds like the lake house will be safe and the way you want it when the construction is finally done. The trip should be fantastic. We will be waiting to hear all the adventures.

DonnaJ   Theresab    doingmybest   My thoughts are with you all. Please take care of yourselves so you can be there when needed.

Walt

 

JT
Survey

Hello All,

I just found this survey because I am a college nursing student doing research to improve the quality of life and healthcare for those requiring home nursing and 24 hour care from a primary caregiver at home.  I am looking to collect some information regarding the primary struggles of caregivers and similar questions.  Would anyone be interested in helping out to improve the healthcare system?

- JT

 

WaltK
Survey

Hi JT

I think we all would like to help improve the health care system. Personally I'm not a big survey guy. I guess you can ask your questions and see what kind of response you get.  It may not be immediate because many on this site find it difficult to write something because of all the other things they are tending to.

Walt

JT
Survey

Hello Walt,

I completely understand that as I am a caregiver as well and know the toll that it can take! Basically all that I am wondering is what the main stressors are for you regading your role as a caregiver and if you think nurses should better educate caregivers on how to use equipment and care for their loved one.  Thank you, I appreciate all of the help you can give me.

Jesse

JT
Survey

Hello Walt,

I completely understand that as I am a caregiver as well and know the toll that it can take! Basically all that I am wondering is what the main stressors are for you regading your role as a caregiver and if you think nurses should better educate caregivers on how to use equipment and care for their loved one.  Thank you, I appreciate all of the help you can give me.

JT

JT
Sorry for that I am not sure

Sorry for that I am not sure why it posted twice and did that.

WaltK
Education

Hi Jesse

Let me address the nurse education question. In my situation I don't have any special equipment needs, but times where special equipment or shots are taken care of by the care giver, it is very important that they are given proper instuctions by the nurse or doctor, so that they can perform the necessary tasks that they are burdened with. I have a couple of friends that are nurses and they have talked about how they thought it was important that both the patient and the care giver understand the proper use of any equipment and the importance of what the equipment is doing. They like to explain not just what the equipment does, but what it should do for them and also what to look out for if it isn't funtioning properly or what problems it could cause if not used correctly.

So my answer is yes. It is very important that the medical professionals educate the care giver and the patient on the use of equipment. I also believe it is important that the care giver ask questions and do research as best they can to be able to give good quaility care and complete care to their loved ones who are in need of the medical care.

When we go to visit my wife's Oncologist, he probably thinks "I wonder what Walt is going to ask me this time". He always takes the time to answer. He is retiring next month and aftering seeing him for 14 years he will be dearly missed because of the wonderful care he has given my wife. He was an exelent educator.

Walt

JT
Survey

Hi Walt,

Thank you so much for all of that information! I really appreciate you taking the time to write back so quickly! I am currently putting together a booklet to be given to caregivers prior to exiting the hospital that allows them to relax and recieve all of the knowledge they can.  In your case it definitely seems like you're a pro at this and educate yourself well enough to be able to provide care, but I have to account for the fact that many caregivers do not do their research and feel as though it is a burden to have to care for their loved one. 

I apologize if my questions were not received well as I know this site is an excellent place for caregivers to vent and feel safe, so I understand if my surveying felt like an invasion.  Thank you for your help Walt and I will continue to work on improving the system! 

Jesse

WaltK
Survey

Hi Jesse,

I'm glad to help out when I can. When  you initially said survey, I was picturing 100 questions asked three different ways like a personality survey.

To answer the question about stress factors is something that is probably different for each situation.

A quick synopsis of my wife's problems and my associated stress as a care giver. 14 years ago my wife was diagnosed with breast cancer. She went through a lumpectomy plus the removal of 7 lymph nodes. She then went through the whole process of chemo treatments through a port every 2 weeks (loss of hair and other side effects) and about 28 radiation treatments. Overall she handled it well not too much pain, tired a lot of time. At that point I was stressing about getting her to all of her appointments (I was working at the time and there were times that she wouldn't or couldn't drive). I also found that her appitite was way off and not many foods appealed  to her. This was stressful because I wanted to make sure she got the nutrition she needed. I also learned food shopping and cooking at that time. I had medical insurance that did a good job. Money is one of the main stress factors for most care givers. Things went well she went back to work. The breast cancer returned as bone cancer and caused a broken hip. She retired at this point. She was put on daily chemo pills and a monthly shot of a couple of drugs. A rod was put in her hip which caused which again stopped her from driving and many other things. The initial radiation my have also been partial cause for her next problem, which was Aortic valve replacement. She spent in the hospital and took some time to recover at home. That is a quick overview of Leslie's medical problems. At one point she was put on a new drug for the bone cancer that was $7000 a month. That is when my strss over money kicked in. We were luck enough to get in a program that drastically reduced that price (less stress).

So here is a partial list (I'm sure I will forget some) of stress factors that I have faced over the last 14 years.

Comfort of your spouse (pain and overall well being)

Providing food, transportation, picking up medications.

Keeping the household running smoothly with limited time.

Money

Protecting her from catching even a slight cold (from other people who want to visit) because of a weak immune system.

Medications at the proper time of the day.

I want to thank you for the idea of trying to educate care givers.

Walt

JT
Survey

Hello Walt,

 

Thank you so much for your help! My mother was diagnosed with ovarian cancer about a year ago and went through chemo and radiation so I can definitely relate to all of that.  It was definitely a struggle and I could certainly speak to the troubles of caregiving but I really needed a second opinion and am grateful that you were able to provide an excellent one! 

You have been a huge help

Jesse

MissHale
Still flying by the seat of my pants

 

Good morning, Walt,

Looks like it is just us two here for now, while Kathi is having a wonderful time in the UK with Emily.  I hope you are doing good. How are things in your neck of the woods? Has summer officially arrived? Are you and Leslie spending more time out on the water/boat now? What have you been up to? Do you have any fun/interesting summer plans? Will you be seeing your boys? How is Leslie doing? Are things getting better with medication and feeling OK? Any projects worth mentioning? Just letting you know that even though this time for me is not optimal (meaning I wish I had a bit more time to post), I am thinking about you and sending you good thoughts and wishes for a nice summer. 

Here things are, as I write in the subject field very busy. We finalized the condo sale and get the keys by the 15th of June, just next week! I got the loan in the bank also finalized, so all those papers are signed and done with. I have also been talking to a contractor who has given me an estimate for re-doing a lot of the apartment. It seems like a good deal, other people say it is a fair and good deal. For someone like me, whose knowledge on construction/costs/time/what I need is so very limited. It drives me a bit bananas that I have no idea what I am doing, if I am making the right decisions and everything is going so fast. I feel quite alone and it is a big responsibility to make every decision and know that lent money to make all these decisions. In my heart I know I am doing the best I can and I do have to trust, but a little part of me wishes I had a father, uncle, professional, friend who knew about these things and could give a word or two. I go to these stores and buy things I have never heard of and hope that the measurements are right.... Ha! You live and learn.  I am all up for learning, but I am so out of my comfort zone these days.  I look forward to the end result and hope I do not cringe! :-) I have bought a new oven, stove, dishwasher and bed. The latter two on sale, and I saved so much, and that always makes me a happy camper. I am going out to IKEA today to finalize my order. I needed the OK from the kitchen guy regarding cabinet sizes. Last time in IKEA (I took some self-paid hours off from work), I had to pull a number, wait 75 minutes then get everything ready only to have to get an OK from my kitchen guy. Meaning I have to go out again to IKEA today, pull a number, wait and hopefully get it done today. It is my birthday today, funny when people ask what I am going to do today, I tell them IKEA, they look at me like I am crazy. (Maybe I am :-))

Soren is doing good. His health is much better, as good as it can get and there has been no complications with the dialysis. His meds are going fine (he has to take over 20 different pills a day) so we are just trying to do our best and adapt to our situation. I am pretty sure he is not so pleased with not been able to contribute on any level with all this moving and decision-making, he does not say anything though. I am pretty sure he can feel the pressure I am under with everything, he tries to keep things calm here if I have a hissy-fit, it always goes over very fast. But all in all he is doing the best he can and has gained a little weight. I have to make sure he does not catch an infection and regulate his diabetes. He has lost a lot of sensation in his feet due to diabetes, so we have to make sure there are no sores, cracks or anything. 

Walt, I am off to the bakery, breakfast bread today and to get some juice. I wish you a wonderful weekend and take care. My thoughts are with you and I will get back as soon as I can.

Best wishes

Michelle

 

 

 

 

 

 

 

WaltK
New things

Michelle

You sound like you are handling all of the "new things" that you are not familiar with very well. You have the stress of out fitting the new place, but the stress of finding the place and all the paperwork is behind you. I hope the wait at Ikea isn't to long. It sounds like you are planning very well for the new place.

Happy birthday to you.

It is such good news that Soren is doing well. That does ease you a little from that portion of the stress. 20 plus meds a day must keep you on your toes to make sure everything is taken at the correct time. Leslie only has about 8 each day and the schedule for them is really pretty simple, but there are still times when we have an OOPS and are a little late with one. I'm sure Soren wishes he could be right by your side making all the decisions and helping with the packing.

Leslie is doing well. She had a Petscan on Thursday and the Oncologist office called and said it showed good improvement. I sat there and cried when I heard that good news. It was such a relief to hear that something positive is happening in the fight against cancer.

We've used the boat a few times and are enjoying the nice weather.

Enjoy the breakfast bread and juice and a great birthday.

Walt

tom huth
A remedy for caregiver burnout

Hello.  I am new to this forum.  Twenty years ago, my wife was diagnosed with Parkinson's, and I've been taking care of her ever since.  For the first fifteen years, I did it all myself.  Now, as she nears the end, I have help.  Throughout this long journey, one simple habit has helped to give me daily relief from the rigors and stresses and disappointments of the job.  It has brightened my spirits and thereby made me a much more patient, more comforting, more understanding caregiver.  That simple habit is smoking marijuana, in judicious amounts.  I am 74 years old, and this is what works for me.  I've even written a book about it.  I wonder if anyone else out there has tried this therapy.