Dementia Narratives & Legacy Projects
DN ❤️ Letter 04 :: Dementia Lives Here Today
I’ve been reading through my dementia journals, and thought I’d share one of my entries with you. This is an older one, but still so fresh in my mind as I read over it again.
There’s a saying that it takes a village to raise a child. The same is true for living with dementia. There are 2 of us here. Two. And it’s a full-time job for both of us. No, we’re not run off our feet. But we are constantly distracted by the urgency of an impromptu conversation or delusion or danger — a tap left running, a door left open, a bleed or mess made by accident, a word misheard that creates a tangent of its own, little white lies to deflect an embarrassing moment, a lapse when you least expect it in the middle of a perfectly normal day.
Dementia lives here today. I’m surprised at how easily I’ve overlooked that fact most days lately.
Today he doesn’t see, think, do, as well as I think he is capable of. Today he is the full gamut of active, witty, grateful, proud, confused, scared, angry and defiant.
Today — living with dementia — is hard. For him. For us.
Despite that, he is happy. Enjoying our presence. Shared meals. Encouragement and company. That is why we’re here. Helping him at the edges, giving him the freedom of free will. Independence. Support.
I heard him at 4 am today, downstairs checking the garage door. At 6 he was in the kitchen. Then again an hour later. By 8:30 he was dressed in jeans and t-shirt, joining us drinking coffee in the side yard. He insisted on showing us how hard the button on his jeans was to do up, especially/only because his finger is bandaged after the shrub pruning incident this week.
We had breakfast — ham and eggs — of which he said “I like this. Eating like this.” Radio on. He wants to help as I put breakfast dishes away but it takes a lengthy explanation to get him to pick up the cloth and wipe the table. Eventually he does it of his own accord.
Then we spent an hour together as he brought out an armful of clothes from the bedroom and walked me repeatedly through his closets. He mentioned Jane, that he sleeps there in the master bedroom when Jane is here, but she’s not here now and he’s not sure who she is. He wasn’t clear about whose clothes (women’s) were in the closet — maybe his dead mother’s, he figured.
I open the blinds in the master bedroom and see that purses are on the floor in the closet. A blouse half strung across the shelves, still tethered to its hanger. “This is not mine,” he says. He doesn’t seem to register that it belongs to Jane, his wife of 53 years. He again opens the closet full of sheets and towels, says “I don’t know what this is. Oh well, I showed you already, right?” Closing the door.
I straightened his bed, where he chooses to sleep now in the spare room, and found out he took a chocolate bar to bed with him last night — chocolate on the floor, his pillow, the back of the shirt he’s wearing today.
Back in the living room, Dad is confused by the sun casting bright spots on the floor, the table, the recliner. “What’s he got there?” he asks, pointing at the empty chair. He walks around visibly puzzling on things. His hallucinations are becoming more vivid.
“Want to come help me with the recycling?” I ask. I pull the bin to his chair, open a blue bag next to it and try to coax him to move items from the bin to the bag. “I’ll get it” he says, points to the kitchen. “It’s not the right day,” he says, referring to garbage days. “I’ll empty it” he says, and leaves to find the bin that is already placed next to his chair. I start doing it, one item at a time, eventually he sits down and joins me in parsing the items. He pauses on the glass jars. “They take those now,” I say. “They do now? OK. That’s new.” When the bag is full he explains how I should tie it off and then proudly takes it to the garage for me.
Then he sits on the couch. Puts on one shoe. Sits with one shoe and one slipper for a while. Needs prompting to understand that the 2nd shoe should replace the slipper on his foot, then he goes outside unprompted and waters all of the cedars and flowers and grass for 45 minutes. It has been weeks since he’s done that so thoroughly without any prompting. Something he’s always enjoyed doing, but has lagged lately.
We take him to walk in the Whitman/Gellatly neighbourhood along the lake. He stops often, and on the return loop is agitated. “We shouldn’t be in their yard” he gruffs as we walk through the public park. “We need to go to the water. That way is mountains. This is the wrong way. You wanna walk? Let’s go then!” He turns away from us, pulling Max’s leash abruptly with full strength. Max is so tolerant with him.
“Dad…. dad,” I whisper. “What?” he shouts. “We have to follow George. He’s almost at the truck. Let’s go to the truck and go home.”
“You can. I can’t.” he says, patting his chest. His heavy breathing was gone for a long while but is back again the last week or so. He follows reluctantly.
“Here’s the truck Dad, just get in the front seat and then we’ll go home.”
At home he is happy. Sits for 2 minutes before moving plant pots in the yard again. His daily ritual.
I forgot to wrap up the garden hose outside this morning. He notices, confused but not agitated this time, and leaves it alone. Switches to survey the yard, touching shrubs, moving pots under the deck and shuffling the biggest rocks into new places. In his slippers he loses his footing and brushes his arm on the stucco. Blood on his jeans, a loose flap of skin on his forearm now bleeding profusely.
I convince him to put his shoes back on, which he does perfectly — pulling out the tongue, tucking the knotted laces in, correct foot, slippers stowed appropriately. He shuffles around, and then I finally clue in that his favourite chair on the deck is not yet fully shaded from the sun. Almost. He is biding time.
When he sits in it, now shaded, he falls asleep.
We have dinner together, and then he comes with me without hesitation to the mailboxes in the next street. “Sure, we can go! The dogs can come too,” he says emphatically. En route he tells me he has to be careful of his heart. He’s been going to a doctor for it, he says (no he hasn’t). He takes a 10 second stop in the cul de sac but otherwise motors along. It’s raining lightly now.
“Who’s the boss?” he asks Max the dog this evening. Max is lounging in Dad’s spot on the couch as we watch hockey. Instead of moving him Dad goes to sit in the recliner, Bo at his feet.
He did the dinner dishes, properly with a full sink of soapy water this time. Probably would pass muster but we put them in the dishwasher anyway once he’s finished and has moved on to other things. He pats the stove top to see if it’s still hot — another ritual we can’t seem to stop him from doing. He gets coffee with cream for himself and George. Still looking at the deck and judging the plants as the sun starts to set.
This mental processing as we try to keep up with him all day long is exhausting.
I am sure every mother can relate, telling me it’s just like having children. But I doubt it’s exactly the same. He is an adult. Strong-willed. Physically strong. Our parent. Not our child. Not the same leverage. Not the same “bedtime or else.”
This is different than having kids that are dependent on you. With kids your effort is about growing their future. A bright tomorrow. Here, everything is for a better today. Because there is no promise of a better tomorrow. The mental game is completely different. And it’s not easy.
It’s not easy to put aside your tomorrow for someone else, when their tomorrow is slipping away in an unpredictable glacial but inevitable way.
When someone gets sick you cling to the hope they will get better. You do everything you can to make it happen.
What do you do when there is no hope of better?
You focus on one day at a time. Create and find joy and pleasure and distraction where you can. You distract. And are distracted.
A Community of Changemakers
Do you have an ambition to explore and document your story? Whether it’s about your experience with dementia, or perhaps a biography of your life before dementia, or maybe a memoir to honour someone with dementia?
In May and June, Dementia Narratives will dive into the idea of legacy projects, and the many ways that we can explore, document, and share our stories (hint, you don’t need to be “a writer”).
Plus, this month’s Changemakers membership bonus is personalized support to help you get started on your — or your parent or spouse’s, etc. — biography.
Available free to all Dementia Narratives subscribers.
Send me an email if you are interested (dementia.narratives[at]gmail.com). I’ll send you guided prompts, we can follow up with a phone conversation to flesh out the details, and I’ll put your biography together for you in a digital file that you can print and expand on.
With love and gratitude,
Beth
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If these ideas have sparked some thoughts, feel free to start a conversation in the comments for this post here on Medium or at dementia.substack.com ❤️
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