I know that I am not alone in feeling that I am carrying a burden as I care for my husband with Alzheimer's. A lot has to do with how the marriage was before Alzheimer's, and if it was difficult, then the Alzheimer's on top of that makes it harder, in my opinion.
I felt it was a burden when I had him at home and was totally responsible for his care. Now he is in assisted living and I have a new perspective. I wish I had him home and could care for him again but I know this is because I don't have him here at home. That probably makes no sense and we had a rough go for a few years here but you are right in thinking that probably makes it harder.
Like most of you, we had a "rough go of it" for a few years. But in the past year my husband has become (thanks to meds!) sweet and although not particularly compliant, loving, and I am grateful that we are out of the burden phase. I have kept him home, and will continue to do so as long as possible which probably will be a couple of years.. he's still strong and eating, though bedridden.
A friend years ago described a man who escorted a university-sponsored trip as being "marvelous. He got us out of all kinds of difficulties.. of course I'm not sure if we would have HAD those difficulties if he hadn't been along." That's the way I feel about AZ: I'm grateful that I have a chance to love my husband again. Of course, I'm not sure I would have ever STOPPED loving him (or almost so) if it hadn't been for the bad days at the beginning of our journey.
"A lot has to do with how the marriage was before Alzheimer's, and if it was difficult, then the Alzheimer's on top of that makes it harder, in my opinion. "--Mary75 And Mary, I agree. I think it wouldn't be so bad if we'd been "soul mates" and there were good memories to carry me through.
I agree with Mary75, Mary and Zibby - when you are not 'soul mates' it can be more of a burden than a labor of love. For me it is becoming a burden and he is still in the early stages.
What I find as a burden is not the care I have to provide for my DH, you know taking him to doctor's appointments or get the meds and hit the grocery store etc...so many of the things he did for me where enabled me to be more productive at home with the household chores. What now is the burden is having to contend with the things of the more manly nature..like getting new windows, getting the gutters cleaned, cars tuned up and the smog checks done... I know if I was a single person, I would have these things to do anyway. But before I met my prince charming, my home was always Better Homes and Gardens ready. It is simpler picking up after myself. DH doesn't get into things yet...but with all the work for 2 it does not get any easier.
Mimi--if you are like me, you will gradually adjust to taking over the things your husband used to do. That part of it was very challenging for me at the beginning; but 5 to 6 years down the road I am used to it--practically like I had always done it. However, it was especially hard at the beginning to take on all the additional responsibility and new roles, when it came simultaneously with the shock of the dx.
I am like Joan in that I'm married to my soul mate and don't regard his care as a burden. Those of you who aren't in that situation are my heroes. I cannot imagine how much more difficult this job would be if our marriage hadn't been as strong as it was. I think those of you who soldier on in spite of prior problems deserve special recognition.
I was thinking about my blog and the comments, and was going to add something, but you did it for me. You expressed it exactly as I was going to - "I cannot imagine how difficult this job would be if our marriage hadn't been as strong as it was." We have the good memories of what was to sustain us, but if the marriage was not good to begin with..............I cannot imagine.
I think that's where your other point about it being a "duty" kicks in. When someone is vulnerable and without any other help, you step up to bat. If lives could be lived over, perhaps it would have been wiser to have leave an unhappy situation before it was too late. That's why when someone chooses to do that, I applaud them as making the best decision for them. But it takes a lot of courage, confidence, and financial security, all of which I lacked at the time. It's true I've learned a lot and am stronger and with more confidence now. That's probably worth the price, but it's not the way I'd have chosen it, if I were running the universe.
I have always said that my DH was not an easy person to live with. I do love him, but the past few years he has made it hard for me to love him. I now know it was the AD that was doing this. I was ready to leave him when this all happened. Now that I know, had I left him I would have come back. He was not an easy man to love, but I was not an easy woman to love either. In a strange sort of way I think we are right for each other. I do miss what we had, but that was many, many years ago. The past 10 years were not so good, the AD I'm sure. We will be married 30 years on the 24th of this month. I don't know what the rest of our lives will look like. But I do know this, I don't want to lose him. Good or bad he is mine and all I have. I know kind of silly at this point. But I will do my best to make his life good. And it is part duty but also some love too. My feeling are changing all the time, I look back and see so many things in a new light. Could of, would of, should of. In the end, it is what it is. And we just do what we can do.
I agree that a strong marriage probably makes a difference in how we feel. In our marriage, Charlie's first thoughts were always for my welfare and my main concern was him, so we balanced each other perfectly. I also think that the fact that we were both widowed made a difference too. We had both lost spouses and were determined not to take each other for granted. Even though I had to place him because I was not able to take care of him physically, he is still the focus of my life and will continue to be a long as he lives. He is not a burden, he is my love. I do sometimes feel as if my "halo" is slipping though. My daughter works for a local credit union and sees many of the nursing home staff and the families of other residents in the course of her work. They always tell her how wonderful I am. So dedicated and loving. I don't feel dedicated and loving, I feel tired, worn out and heart sick but I do my best not to let Charlie see that. Hopefully all he sees in my eyes is love. Even if he does not know who is loving him.
We were so in love, but too often we were mis-connecting. I know now that much of it was AD and a good deal of it was me, altho I might have responded differently if AD had not been lurking and messing with us. I've wondered what things might have been like it there had been no AD, but in spite of some really really bad moments, I never considered not caring for him. We were not soul-mates, we were very traditional male/female mates. And I'd protect and care for him always, it was in my heart to do so. So, yes, I've thought about those who hang in there when the marriage has been bad, I admire you, but don't know how I'd manage. I've read a lot about people caring for parents, someone says her mother was always mean & abusive and now she changes her diapers, so I've thought a lot about caring for parents. My mother was never abusive or mean, she was in every way a good, loving mother, but she had a difficult personality. Once she broke her shoulder blade and stayed at my house, but she was completely uncooperative, would not do what I asked, made our lives impossible. Altho I wanted to care for her, I had to send her back to the hospital. I've thought about my father, how easy he'd be to care for, he'd be so accommodating and grateful, I could do that, but if I had to care for my mother, good woman that she was and love her as I did, I know I'd turn cartwheels to get out of it. I could not last.
We were only married 17 years when a car accident changed our lives forever. My husband suffered a traumatic brain injury and was never again the man I married. We spent many years trying to redefine our lives and our relationship, eventually settling for a different version. He was difficult, with memory issues and anger being a common part of our day. He never worked again at his previous job as a Bank VP. Although he continued to do much of his previous duties at home, I needed to be his backup. And so, after 23 more years, the children and I noticed increased memory problems and the beginning of other symptoms that led the way to his current dx. of FTD. For me, because it started so long ago, when the children were still very young, It became not a burden, but a way of life. I wish he still was my soul mate....but I can't remember that man. He is someone else. Still not a burden though. We are growing old together in a different life from what I had dreamed. The medication has made him calmer than he was all these past years.
Thanks Joan for providing us with a forum to express thoughts that no one else wishes to hear.