Dad and I have been trying to adhere to a sort of schedule around here lately, but every day does not always go the same.
For instance, he usually gets himself up in the morning, and either gets all the way to his chair dressed and ready to meet one or the other of us when we get up, or at least makes it to his bedroom door before one of us greets him and takes him to either the bathroom or his chair.
Sometimes he is dressed, other times one of us helps him. Every day is different. Then, I get his watch and hearing aids put on, go get him coffee and a yogurt, get my coffee (and sometimes a yogurt) and we sit and listen to the news while I try to catch up on emails. Sometimes, I have time to fit in a Spanish lesson or two, other times, I have to bake something to go with breakfast-like blueberry muffins. That was the case today. No one is to blame, it is just us going with the flow.
About an hour or so after coffee and yogurt, I make us breakfast. Then I clean everything up, while he rests, and then I go get myself ready for the day and start the laundry. I do laundry almost every single day. Even if it’s just a small load, I do it so his wet clothes get washed and the towel that goes on his bed is clean. If we have a few things, I add them in. So no laundry has a chance to pile up around here. When all that is done, I go get him and take him to the bathroom to do his business and he brushes his teeth while I medicate his head and brush his hair. (he has had skin cancer on his head, and I’m trying to prevent him having to get “burned” the next time he goes in for a visit to SkinMD).
If he has no therapists coming in for therapy, he goes back to his chair to relax while I go to the office and try to hammer out a blog, or get other writing done on Medium. This morning, however, since he has no therapist coming, (that I’m aware of) I decided to have him do his exercises. I combined an assortment of PT and OT by having him do my old neck exercises that include arms, legs, and neck. Now he is resting while I’m in here working. Sometimes, I can do my writings until it’s time for lunch. But other times, we may have an appointment to go to, or he needs to get up several times to go to the bathroom. It is for these reasons I cannot practice my transcription right now.
After lunch, we used to do his exercises around 1pm, other times, he has therapy. It all depends on when the therapists schedule time with him. Well, I got to thinking last night, his OT with our current home health company is over, and I’m not sure if he will get more PT therapy either, so I needed to come up with a plan so we both get a little exercise. This morning it worked out great. We will see about tomorrow. I had to reschedule my appt. to go get my shoulder injection, because I had no one to come sit with him while I go. I also need to call the VA and get his hearing test scheduled. I just have to schedule it far enough in advance to let David have a chance to plan his calendar around it… or Kevin’s. Scheduling anything right now takes much planning. We got lucky last week because Kevin was in town. We went to the VA twice in one week. Wednesday to get him into the system, and Friday for his eye exam, which went great.
I was talking to my friend Kaye last night about our situation and she said I can’t take things so personally, that is what keeps me all keyed up and stressed out. I need to go with his flow, and just don’t worry so much if things don’t go my way, or people don’t do what I expect them to do. I’m to blame for that. I realized when she said it, that I do that all the time. I can’t control anyone but myself, and I have to realize that Dad is in a new environment he is trying to get used to, so I have the right idea sticking to some sort of schedule, but don’t freak out when things don’t or can’t always go the same way. That will help both of us a lot. Take last week. I finally got speech therapy back out here and when she started doing her thing with him, he threw a red-headed fit! I got so upset, because we had waited two weeks for her to get authorization to come do the therapy and then he acted like that. Kevin said, “You can’t take it personally if he doesn’t want to do it.” He is right, but how am I going to communicate with him then? So the therapist took the word cards I had made that morning and said she would make a notebook or organize them into a better way for Dad to use. That will help a lot more than her trying to get him to make sounds with his voice. He hates that. He has been through it twice before, and it didn’t work. So maybe this is the answer. I mean, head nods and shakes just don’t cut it all the time. It is beyond frustrating when we don’t understand each other.
But back to the schedule. So when Dave gets home in the early evening, we chill for an hour or so and then start fixing dinner, or if it’s already made, we may wait a little longer and then eat. When Kevin is in town, he comes and hangs out with Dad on Thursday or Friday nights so Dave and I can go out to eat. He also has been hanging out on the weekends with us when he can, so we can go run our errands or whatever. That has helped a lot. In the beginning, he didn’t understand how much work this was for me and that we needed a break sometimes. Now he gets it, and he comes to help because he is all we have to depend on. All the boys work, and Connie has been out of town for a month, and Becky is in Spain for 6 months.
After dinner, we watch tv til bedtime during the week. I get Dad up every hour to go walk around or go to the bathroom so he doesn’t stiffen up. Parkinson’s is a mean disease, and makes his body rigid. He has to keep moving, or it will be bad news. Weekends are different and there isn’t as strict a schedule. When Kevin is here, they tend to watch a lot of tv and chill while Dave and I are running around. I was blaming him for not doing all the things I normally do and had to stop myself and just be grateful he is here to spell us and keep Dad company. He takes him to the bathroom and gives him a shower now and then and also takes him for a walk outside (when we are all home). He also pitches in financially with meals or things we need from the store. All of which helps. I must stop the blame game and just be grateful. He is all we have to help. He also is the one who got the VA thing started, because he has a military friend in the system who told him what to do. I had enough to do without trying to figure all that out, so I am grateful to him for that. He goes with me to take Dad to those appointments. So, he does a lot.
I’m sure our schedule will be ever evolving, and maybe Dad won’t even have to go to assisted living if the VA has a better option, like a home health aid or nurse to do what we do in his own home. Time will tell and I will keep you posted on that! Have a great week and I will try to do the same!