It is 10:30 in the morning, and I am sitting with my husband in a tiny office going over something we’ve been over twice now. There is a maelstrom swirling through my brain. Paperwork: copies of her Social Security card and her (now) expired driver’s license, lists of her medications, the bus schedule. The lack of guarantee that she won’t be the last one on the bus when she is taken home, and the fact that I’d left her in the day room, with people she doesn’t know, and I told her I’d be right back.
She is going to hate it. She hated it last year. She has not changed so dramatically that she is going to be even remotely on board with this. I know this. Kevin knows this. Even the Program Director at the “adult day health center,” where we have taken my mother-in-law, yet again, knows this. And yet here we are, again, because People With Clipboards don’t think that we know what’s best for this woman with whom we’ve lived, and for whom we have been caring, over the last 3 ½ years.
I walked out of there with a splitting headache. I’d told her I’d be right back. I didn’t see her again until after lunch.
And, as we predicted, she hated it. She was furious with Kevin, furious with us for bringing her there. She yelled, railed, wept. And we, in turn, were furious with the People With Clipboards who insisted we do this again, just give it a try, “we find that many people do well in group situations, where there’s more stimulation.”
But my mother-in-law is not one of those “many people.” She does well with us, with her children and grandchildren, and with her aides, but she cannot handle a room full of people; she cannot even handle a room full of people that she knows. She does best with a few people at most, listening to music, or being read to. We gauge her needs daily, respect her limitations, and try not to throw her into situations that will overwhelm her. You know, the way you’re supposed to treat someone with Alzheimer’s.
“Just give it another try.” Like insisting that someone with a peanut allergy should go ahead and have a Nutter Butter. Maybe you won’t go into anaphylactic shock this time. You really should try it again just to find out.
We are trying to work with these People With Clipboards, because we have been told that they can offer us additional help, once my mother-in-law becomes eligible for it, in terms of insurance. But it’s apparently additional help on THEIR terms, terms which are seemingly non-negotiable and completely disregard the situation at hand.
We are buried up to our necks in suggestions, instructions, and assumptions.
Kevin and I take turns ranting at one another. We take turns being “the rock.” But sometimes we forget whose turn it is to be the rock, and end up yelling at each other. Two rocks yelling. That’s the worst. We’ve been through enough in our marriage to know that we can’t take this out on one another. We have to walk through this together, like we promised to each other in front of all those people 15 ½ years ago. And we will.
Even as I write this, I know that the people who care about me the most are going to be worried. Please know this: I am venting. This is where I vent.
I realize that I am not alone in this, and that I am not the only person in the world who has had to navigate her way through this particular journey. It is just nothing that I expected I would have to deal with. But then that’s the thing about expectations: you’re better off if you have as few of them as possible.
I never thought I would become something of an expert on Alzheimer’s. I suppose that’s a blessing. A friend of mine from high school is just starting to deal with this; his father was diagnosed a few months ago. I was able to send him a list of resources that we’ve discovered over the past couple of years. Because that was how I could be of immediate, specific help to him.
I read an article online not too long ago, about offering help to caregivers (or to anyone who is going through a difficult time). It cautioned well-meaning people about saying “Let me know what I can do to help.” Because it’s difficult to accept something that isn’t specific. Caregivers are often too frazzled to be able to put into words what they need. And the needs often change so quickly and so dramatically that many days, it’s like trying to put out a fire with one hand while the other is stopping up a hole in the dike. We also don’t want to be a burden. We think that what we’d like is too much to ask. So offer what you can.
The President’s Day Disaster has passed, and we will communicate our experiences with the People With Clipboards. Again. And life goes on. At present, my mother-in-law can still be with her aides during the day. She is mainly cheerful, if perpetually confused. Her thing now is to collect paper towels and napkins, which she carefully folds and stacks in the top rack of her dishwasher. The oven (which we had disconnected from the gas line months ago) holds an assortment of dishes and knick-knacks. I went up yesterday and she’d created a little altar of sorts inside the cat’s empty water bowl (a birthday candle, a miniature ceramic pig, and some old photographs). We bought her an iPod dock this week; Kevin has loaded up one of our old iPods with music she used to listen to (Jackson Browne, The Beatles, Carole King, Tina Turner). We put it on first thing in the morning, and it runs until she goes to bed. Although yesterday she figured out how to remove the iPod from the dock, and Kevin looked at the song that had been stopped in mid-play:
The irony of that notwithstanding, I told Kevin, “Well, come on – that one’s a bummer, dude; I’d take that off the playlist, or we’re going to find the whole thing – dock and all – in the dishwasher with the paper towels.”
Because you also have to laugh. You have to.