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.
Cheryl has two therapy sessions today. One is occupational one is physical. As we pulled into the south portico I realized that it was jammed up with four other vehicles and all are equipped with mobility equipment ramps. I stopped short and helped Cheryl up the curb to her walker that I placed on the walk.
My third thought after damn it is crowded, why are all these people here now and in my way was I guess we do not have it that bad after all. As I helped Cheryl walk past one van the ramp came out of the side door and settled onto the walk next to us. I thought how convenient. A crippled woman was sitting in a battery powered mobility chair. She said, “Hi!” as we walked by. I thought that looks way more difficult to deal with. I wonder what his morning is like as I looked at the guy helping her.
Tomorrow is our 53rd wedding anniversary and the day after that the anniversary of when we met. It is also a blue August moon as it was in 1966. It makes me wonder how often blue moons occur in August. We met on a special day. This year the same celestial event happens. We have had and continue to have a special life. (Follow-up — only once between 1966 and this year. According to the internet of all knowledge.)
So far we do not need a battery powered chair for Cheryl to get around. I do have a transfer chair for when she is not moving well. I bought it as a convenience to me.
It is a task to watch her struggle to walk. She will not ask for assistance or help. One has to brave the storm and help anyway. To me as her principal helper, it is frustrating.
We went to the physical therapist and the occupational therapist today. I suppose I was hoping for some magical solution to Cheryl’s interest and attitude towards exercise. I suppose I was hoping for a story end like the tale of Lazarus. (“Rise up and walk!”)
He suggested to her that she practice by taking big steps and for exercise stomp down on the floor to emphasize a marching motion. He suggested that she practice getting out of and into a chair– nose over toes. Bend forward to stand up. Bend forward and stick your butt out to sit. When you are up – grab your walker. Practice this often and muscle memory will kick in. When we were home she complained of pain in her back. Her core is weak.
He politely suggested that I should coach her to put her feet in the right place and lean forward to stand up. Her has no idea how much friction that coaching causes. (You are always telling me what to do!) I do tell her to lean forward and stand up. I usually put my hand on her back to help her and steady her as she rises. She leans on me pretty hard. She might say stop pushing but if I remove my hand I find that she was leaning hard backward on me and she can easily stumble back and lose her balance. I ignore her complaint mostly and apologize later when I am sure she is stable.
I learned an important nuance today from Justin the physical therapy guy. He had never met Cheryl before so part of the visit was him looking through her records and asking various questions about this and that. He asked about falls. Everyone new asks about falls. I replied that Cheryl falls a couple times a week. She usually falls backwards and it seems to me that it is getting worse. She tends to lean backwards when getting up from a chair. If she passes by a stable solid piece of furniture that she has grabbed for extra support she hold onto that as long as possible even to the point of leaning backwards to maintain contact. Justin told me that is pretty typical for folks with balance issues. (Huh. I was under the misguided illusion that parkies tend to hunch forward. Cheryl never hunches forward.)
I know that there is no magical solution. But I can hope.
Just like I can hope her voice will get stronger with speech therapy.
Just like I can hope for the occupational therapist to be useful to her.
The palliative care clinic is focused on improving her sleep. Part of that is controlling her constipation. If she sleeps well she does better during the day. She can remember who I am for example. She will remember to eat. Perhaps she will quit losing weight.
There is no cure for this debilitating and degenerative disease.