Wow, what a day. I got back home late and was too worn out to post.
I arrived at Sylvain’s house with the groceries just ahead of the patient transport van. Pa had a big day. He met his new private PSW, M. She is a real sweetie. She is young; we think this is probably her very first assignment since graduating. She and Pa seemed to hit it off. He took a walk with her around the house and out onto the back deck. She helped him with his supper; I had made a pasta dish and mango salad that had cucumbers and lime juice. I have never seen that man not clean his plate.
There was a little bit of a glitch in the scheduling of the community PSW, which meant I stayed to help Pa get to bed, but that is ironed out as of today.
I learned a lot. I learned that caring for someone with advanced Parkinson’s in the home is a lot harder than it looks. Ma said to me more than once, “I was doing all of this by myself.” I feel a pang of shame that I didn’t realize the enormity of the burden she was carrying by herself. She told me that when a relative of hers took care of her spouse after his stroke for two years, she thought she understood what that person was going through. She said, “but you can’t know until you do it yourself.” I am beginning to understand the truth of that. You can’t possibly know how stressful or tiring it is until you yourself do it. Even if you aren’t doing any physical lifting or anything to hurt your back, the fatigue comes from not being able to leave the person’s side unless you know they are sound asleep. Even then, you can only make quick dashes to other parts of the house or yard–lest the person wake up and try to do something unwise.
I used to not understand why family members would become impatient with him, but I started to understand it just a little bit last night. The stronger he gets, the more he wants to do. I know he’s had it in his head before that he has to contribute to the running of the household in order to earn his keep. He gets this notion that if he is able to garden again, or mow the lawn, we won’t send him away. Intellectually speaking I think he knows it’s not true, but you can see that thought process come back to his mind now and then. When he tries to do more than he should–given his balance problems–all it does is mean those around him have to be constantly on guard, watching him to make sure he isn’t getting into an unsafe situation. So this time when I overheard Ma say to him, “would you just sit still for a while?” I didn’t begrudge her the sentiment.
Anyway, the schedule we used yesterday worked pretty well. Tonight the community PSW will get him up, help him shower and dress and bring him to the breakfast table then leave. The private PSW will come an hour later and help him to the washroom and then to his chair. She is getting training today from his physical therapist in exercises she can do with him when he’s not napping. I will go over around 3:30 or 4:00 to start supper and relieve the private PSW. The community PSW will come back at bedtime to help him get ready for bed and into bed.
A lot of good things are happening. For one, I am getting to where I can understand him better when he speaks. This means I don’t always have to panic and call Sylvain over to interpret for us. For another, he SEEMS to have gotten over his discomfort with letting me help him with intimate personal things, which is very helpful because it means I can help him in the washroom or with dressing. That’s really a key thing because it means that if the only two helpers during a particular period are me and Ma, she doesn’t have to be the sole person helping him with those two things. I find it helps put him at ease if I show a sense of humour about it.
Another bright moment was after the hired PSW had left and we were taking a walk around the house. I was standing near him just in case he lost his balance. Sylvain was asking him what he thought of M. He agreed she is a sweetheart and then added, “I get on good with this one,” then looked up at me with a huge grin and sparkle in his eyes.
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What I learned recently: We learned that with a person with Parkinson’s who freezes when locomotion is needed, it can help to give him a target to walk toward. This can mean tossing a ball out in front of them and telling them to follow it. Somehow that helps them break the “freeze” and start moving in that direction. So we can start using tricks like that, having someone walk ahead of him and say, “follow him.”
I have also learned that one of the cognitive effects of Parkinson’s can make it difficult or impossible for the person to process stacked commands. So instead of saying “let’s turn around, walk back to the living room and sit down,” just give the person the next step. Otherwise they might only process the last thing they heard in the stack of commands ( “sit down”) and try to sit down right then and there, whether or not there is a chair available!