July 19 2020
Rules. Rules. Rules. We recently needed to move our dad to a senior’s facility with a higher level of care for him. With Covid there are rules, so many rules. Even coming from one residence with no covid to another without the virus, and having had several tests himself – he still had to be isolated in his room for fourteen days. I had to believe that when that non-isolation isolation (we were thankfully still allowed to visit) would be over Dad truly would be in a good place. He’s now on a memory care ward but please please don’t jump to conclusions! Don’t sigh and say dismissively, “Oh, okay, that’s that then.” My dad has dementia – but I know this about the ‘D word’ – you can’t decide what that means for him in particular, or compare it to someone else you know. Yesterday I listened to a poignant podcast about an elderly woman with dementia, and how she told a daughter she didn’t initially recognize, “This is who I am now. Accept this version of myself. Know I love you still.”
In the years since my dad’s had dementia I’ve made irratic frustrated attempts to learn more about the disease, and what I’ve learned most from that is that the way a person’s mind leads them down the path of dementia is unique for every soul. My family has had to learn what sometimes frightening path my dad’s mind has taken him along, as well as all the ways he is wonderfully still the same.
The kind doctor that first diagnosed him told him, Dementia doesn’t mean you’re crazy. It just means your memory isn’t working the way it did before.
My dad is still my dad. He is still honest and good, (though sometimes cranky), with charming wry humour. ‘How long have you been on oxygen?’ – a doctor recently asked. “Same as you,” he said, “since I was born.” And when I try to cool off his hot apartment, instead of telling me he is cold, he asks me if I can find him an ice pick. A nurse brings him his medication and he offers to split it with her.
That humour is evidence of a sharp funny mind. But the same mind doesn’t see the boundaries of his own changed body. Why can’t he get his drivers license back?, he wonders despite being on oxygen, and off-balance even with a walker. It’s on his bucket list to ride a horse again, he tells me and he’d like to get a two bedroom house with a stove to have people over and cook say, a few eggs.
People warn us how sad it will be when he doesn’t recognize us. I can’t predict, but I don’t think that’s going to happen. He knows exactly who his five children are, not always where we live now, but who we are is locked in. He doesn’t know he’s called one of us a dozen times in half an hour. Or that he asked us what time we’ll arrive two minutes ago, or he already called to say Happy Birthday to the brother whose birthday he amazingly remembers. Still if we can get the conversation past why he can’t move into his own place, and honestly sometimes we can’t, we can still engage in conversations about the times that as he says, were a life time ago.
My parents marriage was the union of two people who believed not just til death do us part, but in loving each other completely until then. Their strengths shone through their union but for the last four years our mom had to assume care for the husband who had previously done the heavy lifting for her. Fourteen months ago mom confided to me, “Dads worried about what will happen to him if something happens to me.” I tried to be funny, ‘We are too Mom, so you better stick around.” A month latter, the day after their 66th wedding anniversary, to our childish surprise – she unexpectedly died.
He managed in the assisted living facility we’d helped them choose for a year without her – his guiding light. He’s frail, and weak of body, but not of mind in the way too many think. Yes, he has dementia but he can tell a good story, and set you to laughing with his wit.
Funny what memories we hold onto. Being the middle of five kids it would have been rare to have my dad’s attention all to myself. But I remember going to a department store once – just him and I. I have a vivid memory of how before entering the big store he took my small hand in his big strong one. I honestly remember being so happy to have my dad, holding my hand, just the two of us out together.
What I wish I’d told my mom that day fourteen months ago when she, I realized, was the one worried about him managing without her, was this, “It would be ok Mom. We’ll take care of him.” What I didn’t know as a kid was that my turn to take his hand and make him feel safe would come. It’s not easy to do that always, but listen hard Dad – we’re trying.