Be prepared for the unexpected.
That's the advice I would give to anyone caring for someone with Lewy Body Dementia, but it's by definition impossible.
Today I postponed going to see my mother until 3:30 pm because I am trying to cut back on my hours spent with her. My husband and kids think I spend too much time with her, and a particularly unkind therapist for one of my kids even accused me of spending time with my mother to escape other problems.
Yeah, it's so fun to visit the Reminiscence Neighborhood.
Anyway, today I entered Mom's room about 3:35 pm to find her lying on the floor underneath her wheelchair with her legs sticking out from one end of the wheelchair and her head and arms at the other end.
Her head was resting on a blue foam rectangular pad that was supposed to be a footrest.
The wheelchair was next to the recliner where she had been sitting upright at 3:20 pm when a caregiver checked on her.
But she had decided to get out of the recliner into the wheelchair and had fallen or slid underneath the wheelchair.
"Oh Anne, thank goodness you came!" she said to me when I entered.
She appeared to be okay though shaking and agitated.
"What are you doing, Mom? Why did you get out of your chair?" I began asking.
"I'm going to dinner," she said.
"No, you are not supposed to go anywhere without help," I argued.
"But I graduated," she said. "It's okay now."
"No, it's not," I continued though I know it's pointless to lecture her.
"I graduated," she repeated. "I'm ready to roam."
What Mom meant was that her physical therapy had ended. The therapist had moved her along as far as she could and had trained me and her caregivers to do certain exercises with her.
Actually, it was the physical therapist who had ordered that she sit upright in her recliner, with the blue foam box under her feet, rather than stretched out in a reclining position, because this would be better for her feet. They would sit upright and not get turned in.
Susan, a caregiver, and I had argued with Nora, saying that that position wasn't safe; she could too easily propel herself forward to get out of the chair. but in the end I agreed to give it a try. I allowed her to be left with the recliner in an upright position and the box under her feet.
When I saw Mom on the floor, my first reaction was to move the wheelchair off of her, put a pillow under her head, and try to lift her into the wheelchair, but then I remembered to go get the lead care manager on duty and let her see what had happened.
Esther was horrified when she saw the scene.
"From now on she cannot be left in her room alone in her recliner," I ordered. "She will have to sit out in the common area, whether she wants to or not."
We lifted Mom into her wheelchair and took her vital signs. Blood pressure only 109/69 and pulse 66. Pretty darn good.
We took her to the toilet, where she appeared to be able to be transferred without unusual pain.
What I did not want was six hours in the ER followed by 24 hours in the hospital for observation and two weeks of x-rays, CT scans, and blood tests, as happened after her fall on Dec. 16.
In that case we finally figured out that the pain she was reporting was caused by a broken bone in her clavicle area at the left base of her neck, but I really don't have the stamina to go through that series of doctor/lab visits every two months.
I took her into the dining room and chatted with her for a while, then left about 4:45 pm.
Note to myself: get going on finding a good skilled nursing facility. Mom needs more supervision, maybe restraints, which are not allowed in an assisted living residence.
Somehow I need to find the time to research her next living situation, the fifth since we moved her out of her home in November 2001.