My search for grace and meaning after a former care partnering life with a wife who suffered from Parkinson's disease and dementia giving her a confused and disorienting world.
The whole of the Parkinson experience is measured in tiny little steps. Whether it progresses or regresses the steps are tiny.
This morning for the first time in several mornings Cheryl awakened with an alertness that I have not seen for weeks. I helped her from the bed to the toilet and then she walked herself into the kitchen for breakfast. The previous few days I had rolled he into the kitchen in the transfer chair I purchased for watching grandchildren’s graduations. It was marvelous. She did not move rapidly but she was moving by her own power.
Is that progress or regress?
Which side of the fence are you on?
Progress?
Today, this morning, her disease regressed a bit and she got up after a long night of sleep refreshed and able to move herself around.
There is lots of discussion about apathy and Parkinson. This morning I decided that Parkinson merely enabled Cheryl’s brain with a different sense of urgency or importance. Perhaps I needed to embrace that.
Last night as I coaxed her to bed her impostor syndrome was strong. We drove around for a few minutes and looked at the Christmas decorations while we “drove home”. It usually works and she thinks she is home. It did not work completely that night but she seemed to accept the fact that she was very tired and needed to rest. She went to bed with pajamas on the bottom and her normal daytime shirt on the top (just in case).
In the morning she slept late. When I woke her and got her going I pointed out that she had about two hours until her exercise class started, so she had to move it along unless she did not want to go. She refused to be speeded up and responded that I have been late before. She thinks exercise is important and wants to do it and enjoys it once she gets started. I know that it helps her too. But my sense of urgency and lateness is much different than hers.
I shifted my schedule to agree with her parkie time. My urgency evaporated along with my stress associated with getting her moving.
Overnight conversations seem to repeat with Parkinson’s patients. At least it happens in our home.
Yesterday we had an appointment with a dermatology wizard to look at and remove a spot suspected as a basil cell carcinoma. As a result my wife was anxious before going to bed. (I think I am getting used to this anxiety about future events.)
2 AM
Get ups and trips to the bathroom happen at two hour intervals when she is anxious. On the first trip I did not hear any of the usual thumps and bumps of using the toilet, so I got up to see if I could help. She was standing in the middle of the floor looking toward the closet door on the far side of the bath. How are you doing? — I asked. I’m waiting for the elevator. — She responded. I explained that the door was a closet and the toilet was over here, gesturing at the toilet and opening the closet door.
That seemed to knock her off the fence of using the toilet versus waiting for the elevator to go up or down. Afterward she came back to bed.
4 AM
I am going to take a shower so that I am ready to go to the dentist. (I saw no reason to correct dentist v. dermatologist.) pointed out that it was four o’clock in the morning and there was plenty of time to take a shower later. Her appointment was not until quarter ’til ten. She had used the toilet earlier. I convinced her that it was okay to get a couple more hours sleep before taking a shower.
Before going into the bathroom she sat on the edge of the bed and told me that someone was in there so she would wait. I got up to look. As I open the bathroom door I announce – get moving, Cheryl needs to use the toilet. Then I tell her there is no one there.
She usually tells me there were kids in there. Sometimes she tells me that Virginia was in there. (Virginia is our granddaughter. Cheryl sees her as a five year old.)
6 AM (maybe 6:30)
She is up again with a repeat of four AM activities. It is later now so the taking a shower thing is probably a good idea. I got her morning meds that she will take at seven. She took them a few minutes early and prepared for taking a shower. I went back to bed for thirty minutes of shower noise to wait for the extremely loud alarm clock to spew its wrath on the morning rest period.
Good Morning ALL, said the alarm clock. Off we went to the dermatology wizard and the rest of the day.
Adjunct_Wizard 