I've always admired those who could keep their loved ones at home - while knowing that it's just different circumstances that make it possible, because everyone's lives are different, everyone's dementia is different. There was no option for me but a nursing home for William. And I could see that he was much more secure and felt safer there, and he thrived in there. Yet I felt very guilty about not having him at home. Not taking care of him myself. Even though I couldn't - and it had gotten too dangerous for me to keep trying. I don't know what it is in our make-up that no matter what, we will feel guilty - but I suspect it's because we couldn't "kiss it and make it better". We couldn't nurse them back to health. No matter how much we did, how much we cared, how many appointments we took them to, how many different medications we tried, the disease progressed - in our heads we knew it would. Of course we knew. But deep deep down, I suspect, at least in my case, that that's why there's the niggling suspicion that if only I had done something else - if I had found another way - if, if, if. But I know of course, I know, that "if" nothing. The outcome would have been the same. And I imagine that you are right bemused - no matter what we do, no matter how or where we care for our loved ones, we will feel guilty. It's just how we are.
I tell you something else I suspect. I suspect that the major battles with officials that we've all had to go through, over and over and over, to get meager pittances of support handed out, has contributed to our feelings of guilt. We've had to go so often, with our begging bowls, and face the outraged looks and indrawn hissing of breath as we ask for something, being made to feel like we are nuisances, clogging up their files, and over-working them. If only we had just gone away, they wouldn't have so much to do, and such shortages! When we have had to go again and again, fighting for each drip of support - we can end up feeling a bit guilty about it. Because when William had died, I looked back over the last year or two of his life, and I thought, "Seriously? All that battling, and now it's done?"
I tell you something else I suspect. I suspect that the major battles with officials that we've all had to go through, over and over and over, to get meager pittances of support handed out, has contributed to our feelings of guilt. We've had to go so often, with our begging bowls, and face the outraged looks and indrawn hissing of breath as we ask for something, being made to feel like we are nuisances, clogging up their files, and over-working them. If only we had just gone away, they wouldn't have so much to do, and such shortages! When we have had to go again and again, fighting for each drip of support - we can end up feeling a bit guilty about it. Because when William had died, I looked back over the last year or two of his life, and I thought, "Seriously? All that battling, and now it's done?"