dementia

Your Hand In Mine

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.

Letter to Mom – Written Two Months After She Disappeared

Dear Mom,

I’m so sorry about all of this. If there was something wrong with you before you broke your hip and had surgery for it, why didn’t we figure that out? I’m not supposed to think like this – because you were old and old people die.

God Mom, I miss you so much. I want to talk to you. It’s just little things that I’d say. Today I’d tell you that I went for a swim in the rain. And that I’m scrapping off some old wooden chairs to repaint. You’d admire the chair job because it’s frugal – and will be bright and colourful. You lived a whole long life without learning how to swim so you might not think of it as enjoyable in rainy weather, but it was.

And I’d tell you about going to the farmer’s market at the near-by community hall. Remember, it’s not like the ones in the city. Out here at the cottage they really are farmers selling cucumbers (got some) and zucchini’s (got those too) and fresh potatoes and corn (our supper). Maybe I wouldn’t tell you I bought a beautiful little bird house made by a local artist. It’s exquisite but you’d wonder how many bird houses I could own?

Did I ever tell you that we got the birdhouse off your garage before your house sold? How many birdhouses do I have to own before I’m a bird house collector?

Those are some of the things I’d talk about with you if you were still here. But you’re not and so what I want to talk most about is Dad. God it’s so hard with him. When you first left us (where did you go Mom?) his dementia seemed suddenly less of a factor. Like he was shocked into being clearer. Mom, I know you were 89 and I guess in worse health than we thought, but we were shocked when you died. (You know Dad doesn’t like the term ‘passed away’ so I try not to use it.) When you were first brought to the hospital with that stupid broken hip you said, You didn’t want to do ‘that hip thing’. And I knew what you meant – how a broken hip and surgery can lead to a slow downward spiral. But it wasn’t a spiral at all. It was way faster than that. I’m angry with myself for not staying with you at the hospital 24/7 but I had no idea we were going to lose you. If I could go back in time – I’d go back to then, but I’m guilty of magical thinking believing that I could have changed anything by being there. Your lung collapsed Saturday night but no one knew that . I’m glad I had a sister with me at the hospital, holding your hand and wiping your brow, but she and I are also glad the others didn’t see you, so they can remember you differently than that.

So yeah it’s hard with Dad. Cause he’s not clear now like he was that first week. He’s so lost without you. But maybe I shouldn’t tell you that. Though is there some way that you know? People I’m close to are saying there is. I don’t know what I believe. Are you looking over my shoulder at my fingers moving quickly over my iphone keys right now? Or are you just gone? I thought that I would have somehow felt you by now. There was one morning when I saw you in a dream and it was comforting then, but it wasn’t enough. I’m waiting for something like that again.

Mom we’re doing our best with Dad. It’s so hard as he doesn’t always seem to know that. And they are wonderful with him where he lives. He’s getting out a lot – like really a lot. He asks us to take him places constantly and none of us can say no, even if we’d taken him on a long drive in the country the day before. But we’ll barely have him back and he’s asking when we can do it again.

You’d be proud of your grandkids – they’re visiting him too. Hey, we made the family jelly – your special rose petal (maybe I felt you watching me that night), and raspberry jelly, and the peachy pear. I think we did alright.

Oh – and in this high tech world I taught my granddaughters how to embroidery one evening at the lake. I knew that would make you happy. Oh mommy. I miss you so much. I thought this letter might help. Maybe the first try is the hardest.

I could just imagine your response. I know you’d give me advice about the jam (it all set, but I did have one runny batch). And you’d just love that your six and nine year-old great-grand daughters were embroidering. It was cool to see how much they liked it and went free hand with their names above their carefully stitched puppy and butterfly.

I think you’d tell us we were spoiling dad and we don’t have to take him out so much. I know behind the dementia is my ‘real’ dad, who would never be so demanding. But both that dad and this dad are so lonely for you. I’m sitting here on the end of the dock, feeling as lost as daddy. I’ll slip into the lake and swim, I guess. I don’t know how to sign off.

Love you forever Mom.

Ps. I haven’t done the best job with your bills. Some got paid late. I know you’d hate that. I’ll do better.

Pps. Did I ever tell you that Rose says if she ever had a baby girl she’d name it Vera – after you. I hope I did.