They say Lewy Body Dementia is a roller coaster. This week was certainly that, and more!
Monday, Mom slept. She ate nothing. She wasn’t very responsive, and she refused food and tried to refuse her meds.
Tuesday, Mom was worse. She was refusing food, drink, and also wasn’t able to get up. There was no response, even. As she hadn’t eaten since Saturday, it seemed the end was near. So, I asked for Last Rites and for Hospice to come for a meeting Wednesday morning.
That evening, Morina stayed past her regular hours to feed Mom pureed food (about 20% of her dinner) in hopes of giving her some energy.
Wednesday, my brother and his wife came down from Port Orchard for the ritual of the Last Rites and the meeting with hospice. The ritual was somber; there were some reactions from Mom, but not much. Her eyes were puffy from the deposits of fluid from her legs (the edema was greatly diminished having moved to other regions of the body).
We met with hospice, and Noel told us Mom’s body was readying itself for the final stages. There was the chance, though, she might rally again, but for how long no one could know - but it wouldn’t be for very long.
Mom didn’t look like herself - just a shell. My brother and his wife didn’t recognize her, and I was taken aback by how fragile and at death's doorstep, she appeared. It was incredibly sobering.
Jean popped in for a bit, trying to get Mom to take some water using the sponge for such situations. Mom wasn’t interested. It was touching, seeing the two life-long friends saying a possible farewell.
That evening, though, Morina and Mary began dripping water through a straw into Mom’s mouth, slowly and deliberately, to hydrate her. Whether this had an effect, we’ll never know.
Thursday, staff was moving about readying the other residents, keeping Mom’s room open so they could maneuver in and out more easily when they heard her bed alarm. Suddenly, the door closed, and seconds later, the alarm stopped. They ran over to see what happened.
There was Mom, sitting up in bed, asking to get ready for breakfast. I’m not kidding.
By the time I arrived, she had eaten breakfast, snack, and was finishing her soup, but feeling nauseous. I spent a while with her, but she was very tired. As I left she was resting comfortably in the geri-chair facing the windows.
That night I received a call - Mom was trying to walk, but had fallen. There were no injuries, and she just wanted to be helped up. Whew!
Friday, Mom was up, again, and eating her breakfast. When I arrived that morning, she was finishing her breakfast but wasn’t at all hungry for much more. She went to the geri-chair and we sat near the windows, where she fell asleep.
When she awoke, she was ready to use the loo, so the caregivers took her, and then she came back and rested some more in the chair. She didn’t want any music, didn’t want to be read to, didn’t want much of anything, just to rest.
That night, I received another call (always seems to be around 840 pm). Mom decided to walk, again, and no one heard the alarm at first. There she was, favoring her left hip (her right one is arthritic from a fall several years ago). She refused help. She said, "I thought I could walk! I guess I was wrong..."
Hospice was called, as Mom complained to too much pain for the staff to help her up. When hospice phoned me they stated Mom was not allowing them to check her. So, they phoned the paramedics to come help her into bed.
Well, that's all it took. Two bright young lads came in, used a dragsheet, and hoisted her into her bed. Mom was so happy. She called out to them, "Thank you, you kind young men! Your mothers must be proud!"
When the nurse checked her for pain (we feared she'd harmed her hip or tailbone) it was simply the arthritic right hip and her knee (go figure!). So, they said they'd check in the morning to see how she would manage with the pain.
Saturday, she arose, and then Connie and Jean came for their visit. It was a good one. There were no complaints of any pain.
Jean says:
Norma had come to life, again, speaking in sentences and being quite logical. She didn’t eat much lunch but had already eaten a goodly portion of her breakfast rather late that morning.
The little clique sat about and gibber-jabbed for nearly 2 hours, having a wonderful time, in the great room.
Connie brought a picture Mom had sent her years before of her on a mountain top. There was also a letter from Mom talking about what her family was doing (I’ve not seen this, yet). It was a wonderful topic of conversation.
They aren’t completely sure of anything else they spoke of, but it was a very good visit.
The group laughed and chatted some more about what, God only knows.
They said their goodbyes, as at this point, it’s unclear as to whether or not any of us will see her again in this life. It’s just too frail a condition.
After two hours, the two lasses toddled off to their merry lives.
Mom didn’t eat much else that day, but they made sure she did drink juice and water.
Sunday, Mom was not really wanting to get up. She talked about it, but it wasn’t until the staff reminded her I might be coming (around 1030) she finally decided to say, “No!” and then allowed them to change/dress her for the day.
Soon after she rose, my brother from Vashon and his wife came to pay a visit. She spoke to them both, and it seemed a good conversation. They left a little over a half hour later, wanting to get home while the driving was still clear.
Mom didn’t eat much today, so far. She is drinking but has very little appetite. What that means I haven’t a clue. I’ll be checking in on her this week, so we may be following along this path, or turning back on a loop to where we were this past week; who knows by now? We’re all befuddled.
But then, dementia is befuddling, isn’t it?!
