[I wrote most of this in response to a post on an Alzheimer’s and Dementia support forum. I thought it might be helpful to others.]
Why place them?
We placed because we could not keep him or us safe anymore. We placed because weeks on end of virtually no sleep and constant stress was killing my mom. We placed because we just couldn’t do it anymore.
We placed because if he were in his right mind, it’s exactly what he would have wanted us to do.
That doesn’t mean it was (or is) easy.
If he’s doing well, you’ll say, “Hey, he’s doing well. Maybe I was too hasty in placing. Why didn’t I just try harder?” If he’s having a bad day, you’ll ask yourself, “He looks awful! What have I done?! Why didn’t I just try harder?” We give ourselves credit for having more control over it than we really do. We act as if the question of decline is “if”–but this is a fatal and progressive disease. The question is always “when.” Which means whatever that leaves you feeling like you are at the end of your rope is going to get worse.
I learned from hospice to expect a decline after placement (which, in all fairness, is true after any big change), and we are seeing it. Pacing, disorientation, agitation, trying to leave, etc. are common for people, especially right after they are placed.
My dad is a master pacer. Where he lives, if he’s been up pacing all night and he stops somewhere, anywhere and falls asleep, they will let him sleep if possible. I understand why and support the choice, even if it’s not all tucked up in his bed looking cozy, the way I’d prefer to see him rest.
My dad will fight aggressively about showers and changing clothes. So, I understand that unless we insist on it, that won’t happen as often as I’d prefer. But it’s more important to me he’s as content as he can be with a minimum of meltdowns than whether or not he has the same t-shirt stains as yesterday or the day before.
I guess basically I’ve learned to pick my battles for stuff that matters most to me and adjust my expectations across the board.
Just because they handle things differently that the family would at home doesn’t mean there is neglect. Basically, this disease is messy and solutions for dealing with it are not perfect. It was that way when he was home, and it’s that way in the nursing home.
It’s hard. You will second guess yourself to kingdom come. Keep going back to the reasons you placed to begin with because they haven’t changed. If anything, they’ve become more pronounced.
Know doing the best you can is enough, because it’s the best you’ve got. You cannot eliminate the impact of the disease, but with enough love, you can certainly make it a little easier on everyone whom it touches. (And that applies to self-love, too. Especially.)
And hugs! Because I get it.
