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.