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I am care-giver for my husband of 49 years and have been growing into that role over the past six or seven years. It started with him being perfectly healthy and strong as an ox (except for diabetes which never bothered him for the first 20 years). We bought a few acres of woods and built a house. He began by doing some work himself, chainsawing down trees, digging foundations, etc. Then he began to have trouble walking without stumbling and falling. His hands began to lose feeling. Neuropathy has begun. Five years ago he had a major heart attack and acute kidney failure. He seemed to recover ok from that. But by three years ago I had to quit work (retired earlier than planned) to care for him because he couldn't fix his own good during the day when I was at work, had fallen a couple of times, couldn't work the telephone anymore, etc. Two years ago he was diagnosed with Congestive heart failure and chronic kidney failure. He has COPD. He has been on oxygen 24/7 since then, has breathing treatments every 4 hours around the clock. He has gained over a hundred pounds of fluid over the past year. He has been in the hospital nearly every month for almost two years. He cannot perform any activities of daily living except some foods he can feed himself. He cannot walk without a walker and then only a few steps. He doesn't sleep much, at least not at night. And he mostly sleeps sitting up in a chain because he can't get comfortable in his hospital bed. He is almost totally blind. He can no longer talk on the phone with family and friends because he gets too short of breath. He just had another heart attack in January. The doctor says he needs surgery for blockages and to put in stents, but his health is so bad they can't risk the surgery. His kidneys no longer trigger the production of red blood cells. He is on Procrit plus he has had five transfusions since December because he is so anemic. His heart goes into abnomal rhythms on an increasingly frequent basis but they are not treatable. He takes so much medicine! He has an indwelling catheter for bladder control because of his internal nerve damage from the diabetes. He has had it the past five years. It is hard to see such a big, tough, independent guy reduced to having to have his nose (and other things) wiped for him. But for the most part he has borne it remarkably well. But now that he knows that his time is getting short he is so emotional. I know he has to feel like he has some control over his life and things around him, but I can't seem to stop myself. I get all defensive and start argueing with him . His schedule is full around the clock and I feel like I am always tired. I get only an hour or two of sleep at a time. It is so emotionally draining to keep up a cheerful attitude, then add that to lack of good sleep, it just leaves me exhausted! I fall asleep if I sit down for five minutes. Sometimes I sit up with him all night when he can't sleep and we talk. In fact, we have had some really good conversations in the wee hours. Things we should have talked about over forty years ago. And we have cried together because this is definately not how we planned to spend retirement. But mostly we go day to day and deal with each one as it comes. We now have home health with regular nursing visits and aides to help with bathing him as I can't bed bath him anymore as his weight is now over 400 pounds. The fluid just won't go away. Not that the doctor hasn't tried his best, but balancing the kidney failure and the heart failure has gotten very delicate.
I don't know how much longer he can go on before his heart stops. I can't find anyone who has had this combination of problems. Not that I want to know, anyway. That would be terrible, watching the day come closer. My heart is breaking and I can't talk to anybody because they are all heart broken, too. I can't even write in my journal. There aren't words for what I feel right now. I want him to have the best possible that he can have. I don't know if i can give it to him.
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Hi Okieangel:

I almost thought I was reading my life. I am 46 years old and have been taking care of my husband now for 1 1/2 years. Alot of the time he too has been in the hospital. He was a very strong independent man until November 13, 2003. That night my whole world feel apart. He complained that he could not breath and within one hour he was in the operating room at Longmont United Hospital were they told me he was having a heart attack and that I needed to sign here to give them premission for open heart surgery. And then they told me he did not have a heart attack, but that his whole body was just shutting down. They did not expect him to live through the night. He was in the hospital for 7 months and then went to a nursing home for another couple months, and then came home August 13, 2004 exactly 9 months to the day that he left. He has CHF, COPD,Diabetes, End stage Renal failure, Severe hypertension, Severe anemia,
and has lost both of his legs below the knee. He has no muscle, and has went from weighting 245 lbs to 160 lbs. He now has to have dialysis three times a week, and we are not sure when he can come home because he is very weak and can not transfer himself from the bed to his wheelchair. I have been going to therapy for a couple of months and it has really helped me to still live my life the best I can, and through all the crisis that my husband has had to endure. We also have custody of our Granddaughter Jazmyn who is almost 5 now. ANd I have her in therapy too. She has attachment disorder from not having her needs met as an infant. I have alot of problems sleeping, and I have not gotten more than a few hours at a time the last year or so. I am finally on medicine for my Bipolar disorder so hopefully soon I will see some results. I have learned to just do what I can, and when I have had enough I take a break. My daughter, her husband and their two children live with us too. So our place is anything but quiet, and there is always something going on. But I know that I am doing the best I can, and I take care of myself first. Something I have not done in the last year. But this year I realize that I have to continue to have a life, and after my husband passes I must go on, and Jazmyn helps me alot with remembering that! My husband was not expected to even come home. And since then he has been back in the hospital at least once a month. It is hard to make discissions and choices when I have no idea of how long he will be with us. I have had to fight him like a child about his diet and exercise since August. This time I talk with him everyday during our visits about how things will be when he comes home. He has lost both of this feet because of wounds that would not heal, and then later became infected. Everything from his heart failure to his renal failure stems from his diabetes. And I am trying to help him understand this. He has never really controlled it. ANd after 25 years this is what happens. The next time it won't just be a wound that is infected. It will be his body shutting down, and we will lose him. So I pray for patience, and the words to help him understand. ANd that is all I can hurts me so much to see what he has done to himself. So see I understand alot of what is happening to you. My husband can not even keep any weight on, and he forgets to eat alot. I try to be on top of it, but I can not be there all the time.
Now we just wait to see what happens next, kind of how I have lived the last year.
Thinking of you, and sending prayers your way.
Thank you, K. for answering my post. You are right about our lives - we are almost mirrors! I guess there are a lot of people going through the same kind of problems but you can't know that when you are so immersed in your own problems you can't see further than the door. Thanks for sharing with me and the good thoughts and prayers. I really appreciate that and will do the same for you. Take care of yourself. I am beginning to see just how important that is.
Bye for now. Okieangel
Thank you for your post. Just to let you know my husband lost his battle in Feb this year. I am slowly recovering, too. I can sleep at night now, and am getting out of the house more. I am back in church and that has helped me a lot. A part of me knows that I did everything I could, but another part says "maybe if . . ." but it is getting easier. I know I will be alright. I am so thankful that my husband had executed a living will last year. It made things so much easier at the end because I was spared some pretty tough decisions. He had already made the decisions ahead of time. The last three months were in the hospital and I stayed there with him the whole time. I would do the same again if I had it to do over. God bless all of you.
Hello Okieangel:

I, too, am sorry to hear of your loss after fiftyish years together and am so glad that you are still here at the boards sharing with us. I can so relate to the different parts of where we wonder "if only..." But, we do the best we can with the information that we have to work with. I truly believe that. (I say this to comfort myself as well all the time...)

Thank you for sharing the information about the practical matters such as the living will. Those tough decisions are the worst to think about when in a crisis. And I agree with Donna above about remembering to be kind to yourself as you go through the grief.

Love and Hugs from Glenda

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