I'm learning a lot these days about the word Dementia.
Well you know I call it 'Slippage', it is a kinder word. I wish the doctors would just call it something nicer like what it is.
Brain Disease. Perhaps instead of Dementia or Alzhiemers, or Vascular Dementia, Lewey Bodies...it could be called simply Brain Malfunction. Okay not that think of how the doctors like to use initials. BM sure wouldn't work well for Brain Malfunction.
Some days the neurons and memory pathways work perfectly for my MIL. She has very bright days which are less than her dim days. Those days she tells me of things that make no real sense to me, but make perfect sense to her.
She tells me that they moved her room again. I ask if it is 210 and she says yes of course it is. But they move it often, her name and number stay the same but sometimes they put it in different places.
I think about it later and this is a perfect explanation. It makes sense. If she is having trouble finding her way back to her room, it must have been moved. In her mind that is the only logical reason.
I'm beginning to understand how her mind will grasp something and she makes sense out of it with this type of reasoning. I applaud her line of thinking, it is imaginative.
It shows that she still is thinking and that is a good thing.
So the next time she told me that, instead of correcting her we went on an adventure to go find her room. We were both pleased as punch to find it and I congratulate her on being so clever.
"Not clever," she laughs. I leave her for the afternoon and go back home. In a way it feels hard to leave her sitting in her room like that. But now I know she will get her 'lift' chair from her apartment in her room. This should make her daytime naps easier and more comfortable than sitting in her wheelchair nodding off.
Dementia tests. There are a variety of them and though I understand the need for them to mark a baseline and watch the 'progression' of the slippage, I disagree with people visiting and trying to tell MIL to remember this or that. Endless questions instead of casual conversations.
Leave the prognosis to the doctors, but be there with your parent or spouse.
Yesterday Rich had a physical.
The nurse gave him a short 'dementia' memory test. A SLUMS test. He actually did very well and if the nurse took into account that he has aphasia, she would have scored it higher. I noted that to her... but... oh well.
His COPD is a bit worse, but I knew that because he has been avoiding going to Pulmonary Therapy. He figures that his summer work is done and he doesn't need to do more? Not sure.
Each time we get ready to go to Fresh Start he finds a reason he can't go.
"My tummy hurts"
"I'm too tired"
"I feel dizzy"
His room 02 sats are falling so I tried to show him that IF he doesn't work at it, he will get connected to the dreaded cord all the time again.
This resistance is understandable and frustrating at the same time.
I have been engaging him in opinions. "Show me how to put this cordless drill together!" He does. "If I build the stall and put some plywood in the spots where Fred would put his head through the rails would that help?"
We discuss zip ties and plywood.
A short but satisfying talk in which he tells me that I had a good idea.
He still there but fades most of the day into watching the trees and the mules out in the pasture or a TV show.
No longer is the boss guy around. The guy who would shudder to know his wife can drive his skid steer and drill a hole in plywood...or even rebuild a stall.
His is not so much 'slippage'. His memory is spotty about things from a year ago. But his issue is apathy. Stroke related apathy.
He listens to the doctors and nods, he listens to me and agrees to 'try' to do more.
And then.
He returns to watching out the window or getting tired. Self motivation seems to have disappeared completely.
Winter is coming and I feel like it could be a long one.
I hope you get a chance to get away sometime in the next few months. I know it is hard. Pulmonary Therapy is a commitment...Far Guy goes three times a week...other guys there do provide some encouragement.
ReplyDeleteWhen Far Guys Mom began to have slippage...I made her a small book with photos and stories inside it, reminding her who her parents were, who she married and who were her kids and grandkids...and where she was. It seemed to help...I read her the entire book the morning she died.
I agree it could be a long winter.
I have a weekend I am planning to go spend some time with my eldest son. No plans other than to visit and play with the dogs. I told him that I would be fine with just mundane things, an unbusy weekend.
DeleteI am getting a chore person and a person to help Rich.
I've have been spending 3 hours a night 7 days a week for the last 2 years with a family member with dementia. It is bittersweet with some great moments mixed with heartbreaking moments.
ReplyDeleteYou are right Larry, having the time to spend with someone is actually in a bittersweet way, very rewarding and heartbreaking at the same time.
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