Mom’s been ‘in care’ now for two and a half years. ‘In care’ needs a little unpacking, because she wasn’t out of care prior to moving into a care home. She was in good care. But my point is that she’s been living away from family now for two years and six months. Approximately. Since Easter of 2016 when she had her first ‘heart event’.
I’m too tired to write this. My thoughts are everywhere. But what I wanted to get down was that she’s obviously not improving in care. She isn’t dead, which she’d be if she wasn’t in care. And Dad might be too. So there. By health care standards it’s a success. By Mom’s standards it’s an abysmal failure. She’d likely be happier if she was quite dead.
The care home staff are wonderful. Gracious and genuine, caring and well-trained people who value their work and bring their hearts with them to the care home. I pretty much love them and can’t tell you how much I appreciate them. So much!
So often I walk in to find one humming in Mom’s room, or stroking her hair. I hear them calling her ‘honey’ or ‘sweetheart’, and they literally run when they hear her bed bell alarm. And Mom appreciates them. She tells me that the place she’s living in has good people in it. I once found a note in Mom’s handwriting saying thank you for a night snack. I brought it to the staff and they posted it in the staff room as a reminder that what they do counts. What could be better than that?
Okay. But still, Mom’s not getting better. She’s losing her words. It’s so difficult to watch her struggle to find ways to say what she’s thinking, and then her face goes slack. Does she forget or give up? I’m not sure. But I have four examples of how she is communicating in sophisticated and meaningful ways in spite of the neurological wrecking ball that is Alzheimer’s.
Incident A: I get a call just a week after Mom broke her arm: Mom’s lost her false teeth. I sighed the deepest sigh ever because …. long story. But people lose things in care homes. It’s a recurring theme. Tiresome, but the reality of it.
They have looked everywhere. Turned the room upside-down. Checked everywhere. The teeth are no where. They suggest I consider getting replacements.
I can. I had the mold made a few years ago just in case this happened. So that’s not a problem. But I tell them, “Let’s wait a week. They may turn up yet.” And when I tell my dad he says he’ll check the next day when he visits. Which he does, and no: no teeth anywhere.
My brother and sister are going the next day and they do a room search also. Nothing.
And I’m there the day after. I turn that room inside out. I mean it. Every single drawer got emptied of every single thing, and wiped out while I was at it: cookie crumbs and used tissue, hardened sandwich crusts and empty envelopes. When the aide comes to help Mom to the bathroom I tear her bed apart: shake out every blanket, pull up the sheets, thrust my hands into the pillow slips. I check the bathroom cabinets and bags and containers. I look behind the toilet, in the hamper, in all her little soap dishes.
I run my hands through every magazine and book, every newspaper and every box in that room. I check in the pencil case, and in all her little containers. I use the flashlight on my phone to look under the bed and the dresser and the desk. I check in the bar fridge and the freezer. I check in the box with her tea bags and hot chocolate pouches. I check every single pocket of every item of clothing she owns. I run my hands into every sock and glove and mitten and slipper and boot and shoe. I sort every item of clothing and fold them and put them back where they belong. The random bits of clothes stuffed into drawers all get put back.
No teeth. And all the while Mom’s half sleeping. Just zonked out on the bed with her eyes closed. Though once she asked what on earth I was doing, and I said, “Looking for your teeth, Mom.”
“Oh. Find those little coloured jars. They’re blue or orange? With lids.” I know what she means. There are exactly three of them in the room. Hospitals and care homes use them to store teeth in over night.
“I did, Mom. You have jewelry in one; a rosary in another (a rosary? Mom’s not Catholic! Where did it comes from?); and the third one’s in the bathroom, empty.”
“I put my teeth in the jar.” And she goes back to sleep.
Later she needs to use the washroom again. The care aide is in there with her; she and I are chatting through the open door. She calls out, “Did anyone ever find Dora’s teeth?”
I tell her no, but that this room hasn’t a speck of dust left in it because I was cleaning as I looked. The room is clean! I’m laughing.
Mom says, weakly, again, “Look in the jar.” I tell the care aide about the containers – she obviously knows what I mean and holds up the empty one from the bathroom.
“Yeah,” I say, “I checked them all. The only jar I didn’t look into was the peanut … butter …….. jar………..”
In the top drawer in the bedside table, right beside her glasses case (which I’d looked into – glasses: check; teeth: no.) is a small jar of peanut butter. Mom loves the stuff and we make sure she’s always got a stash of it. I’d had to move the peanut butter jar to empty out that drawer. Which I checked so thoroughly.
I opened the lid of the peanut butter jar and there were her teeth. They’d been there for four days while a half dozen people searched that room looking for them.
But Mom knew where they were. She knew she’d put them in the jar. Language.
Incident B: At the same time that Mom broke her arm she also ended up with an infection. It sapped her energy and spirits until she wasn’t eating and was barely even communicating. She could hardly stay awake even. It was alarming. But she was making some progress until last week when …. she fell again. Bruised her head in the same spot. The goose egg was enormous and the bruise is awful.
I took the day off work the next day to see what could be done. Won’t talk about that here. But when I walked into Mom’s room Dad was there, as he is every weekday morning, sitting in the chair in the corner. Mom was asleep. Or lying in bed with her eyes closed, anyhow.
So Dad and I are chatting and Mom’s eyes flit open a few times to watch us. Dad is telling me how he’s got to get going because it’s a nice day – perfect for climbing on the roof of the shed to fix the skylight. It’s been leaking. He plans to fix it today.
“Dad! You are 87 years old! You can’t be climbing ladders and crawling around on rooves!”
He laughs. “Oh, I’m not that old! Besides, it’s half done! I already was up there yesterday and covered the window in plywood.”
I’m sort of horrified. My aging father hauling sheets of plywood up onto the shed roof and banging around up there with hammers and things. I say, “Dad if you fall down from there you’ll hurt yourself! You’ll be a car wreck! I’ll be furious! You better not!”
He sort of snorts, as if to remind me that I don’t get to tell him what to do. And he gets up to go. He reaches for Mom’s hand and she stretches it out towards him. He says, “Well, Dora, I’ll see you Monday then.”
“George!” she says, “George, don’t let the cars hit you!”
He’s confused. And me too for just a second. But he sort of makes of a joke of it, making light of the fact that Mom’s not making sense. But she is. She heard that he’d ‘be a car wreck’. He says, “Dora, I can’t control what the other cars on the road do!”
“Dad, she means, don’t get into an accident. Don’t get hurt.” She’d overheard my comments and was expressing her concern for his safety. Oh my gosh.
Dad leaves, and eventually I have to leave too. I explain who will be visiting next, and when, and she reaches for my hand. “Don’t you let the cars hit you either. Don’t you stop, or I’ll be ruined.”
Don’t you stop or I’ll be ruined.
Mom’s in a care home with advanced Alzheimers. She has her left hand in a cast. She’s got a call button by her head, and a bed alarm tied to her. She’s receiving full care because she can’t care for herself – toileting, bathing, feeding – everything is full care. Her forehead is every shade of purple with a goose egg forcing her one eye partly closed. She’s on a list of meds that is formidable for her arthritis and heart disease and blood pressure and pain.
But if I stop – stop what? Stop living? Stop visiting? – if I stop she’ll be ruined.
She didn’t have the words to sort out what she wanted to say: stay safe; don’t get hurt; I love you; if something happened to you, I’d be ruined. But she said it very well just the same.
That ruined me. I bawled all the way home.
Incidents C & D: Today. I go to Mom’s for my Sunday morning visit. She’s in bed, of course, but I see evidence of someone’s half-done breakfast at her place at her table in the dining room. I ask, and yes! She came out of her room for breakfast! They wheeled her out. This makes me sad (Are her days of independent mobility over?) and elated (She’s eating again??).
When I get to her room, she’s in bed, of course, as I said. I do a little tidying and she opens her eyes. She needs to use the washroom. We figure that out somehow and end up by the big window – me in the arm chair, and she in a wheelchair. It’s a gorgeous day and we chat about the sky and the trees and we sit together in silence.
She says, “You know, when you have babies, you have to make some choices….”
These are the kinds of conversations I like to record and I reach for my phone, but she keeps going before I can get my recording app open. I say to her, “What do you mean? Like, when you have babies you have to choose how to raise them?”
“Yes,” she says. “You know, like when you come to a stop sign, and you have to decide which direction you’re going to take next.”
A metaphor! My mother with advanced Alzheimers used a metaphor to help me understand what she was trying to tell me about child-rearing. I really wanted to know more – what was she remembering? What made her bring this topic up?
“What?” she says. “I don’t know. I don’t remember.”
A metaphor!!! Gosh.
And then, and here’s Incident D, we’re still sitting by the window but she’s starting to sag a little. She turns to me, and reaches out with her one hand (the broken arm always just sits in her lap limp, like a wrecked wing) and smiles. That sweet smile. “There are always bad days, Evonne.”
“There will always be bad days. You can’t escape them.” And her eyes hold mine for a few moments. I knew exactly what was going on. She’s self-talking. She’s propping herself up and reminding herself to not feel sorry for herself because bad days are a part of life. They are a part of living. You just take them as they come and let them go at the end of the day. Good days may come yet, and surely there’ll be another bad day. Don’t let them get you down.
In that one soft stare, and her gentle voice, I heard it all. Mom is self-talking as a strategy for coping with her bad days. My mother with advanced Alzheimers is employing a cognitive strategy for managing her stray and random thoughts, her disappearing memories, her out-of-control emotions, her brain’s sickness. She’s trying to cope. With self-talk. Wow.
I love you, Mom. You are STILL teaching me how to live my best life.
Okay. I’m crying again and it’s time to stop writing.