After the pets stopped talking this week the roller coaster picked up speed. I think I prefer talking poodles and yapping cats. Fuzzy and I are going to have to talk later...
It's been a full week of dementia and Parkinson's. When the shaking subsided, the thoughts increased. I am afraid to get undressed in our room because I am almost convinced my late in laws are visiting at night. Since we never met I do not want to meet them in the altogether. There are serious considerations for meeting in laws with bedhead and unbrushed teeth! Last Tuesday morning I almost had to take Jay to school at 2am. The only problem with that is that he is now almost 49 years old and lives in NC. He did not want to go to school. I know that without even asking him.
We took Casper off all the PD meds, and some of the thoughts are reducing, but the symptoms are now picking up steam. We seem to be at a crossroads- either tremor or be delusional. What a choice! PD sounds like such a simple disease. You tremor a bit, maybe you are a little unsteady on your feet...
Not so much. We tried to go show shopping last Saturday. Casper is now dragging her foot so much that one shoe wears out first. We lasted one hour at the mall. Looking at shoes was anxiety provoking. Walking was hard. Talking was hard. And the stores- who decided that stores all need loud music? Casper gave up. She was grey from exhaustion and soaked in sweat from the exertion of walking around for an hour.
Then I really blew it. Someday I am going to learn finesse. Apparently not in this life, however.
"If we had a wheelchair you could use it when you needed it and we could stay out longer. You would not get so tired."
Ruh Roh. The LOOK. Remember, PD causes a mask on your face- there is not emotion when you reach that stage that can be seen on your face. Smiling takes effort. otherwise, there is simply no emotion. That by itself can be intimidating. But when your spouse suggests a wheelchair? Yeah- there was emotion. All in the eyes, but it was there. And completely focused on me. Not in a good way, either.
Okay, I am in trouble. I can stop, or just plunge ahead like a polar bear on New Year's. Plunge I did. "You do not have to use it. But we can keep it in the car, and I could go get it it on bad days so we can still be out and part of life." Silence. "It would let us be out more."
"I am not using a chair. If I can't walk I will stay home." One last college try- a below the belt one, I admit: "Linda hated hers too, but she used it so we could still do things together." "Please?"
Silence. This is one of the many hard talks that have to happen when someone is seriously ill. They are unavoidable, they are never fun, and they are absolutely necessary. Being locked in a house is not good for anyone. PD is especially cruel in that one day you feel good, the next you can't walk, and one day you think you feel good and an hour later you have to sleep. There is no way to plan for anything. So things like wheelchairs and scooters and walkers become necessary, and are universally despised.
"No."
Two minutes later Casper nearly fell simply walking. When we got home she fell trying to get undressed. She was tremoring so badly her teeth were chattering.
Yesterday I requested a chair from the doctor's office. They are getting it approved. I told Casper as we were talking about her illness. She asked me how she was going to die. Another one of those hard conversations. We talked about choking, pneumonia, falls, The usual end of life for PD. The ugly side of what we face every day. I told her the chair would be coming.
When I got home yesterday evening she was ready for walk. A long one. The fight was back in her. Walk we did- and even visited good friends along the way. Then the symptoms roared back. We got home with a few minor incidents, and she was in bed moments later. Today she can't get up without assistance. It is life with PD. And we need the chair. It's a process. So is learning finesse. Maybe we can both get there at the same time?
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