About 4am Mary Ann was up. Then again once an hour until a little before 8am when we got up for the day. There was some of the intensity that can develop into hallucinations and hyperactivity, but this time it did not get out of hand.
I suggested that after I wash her hair we should head to Perkin’s, where she always orders some pancakes and a couple of slices of bacon. She liked the idea. She did have juice and yogurt with her pills as usual, just not the bowl of cereal. It took a while to get the morning chores done today, so it wasn’t until about noon that we actually headed to Perkin’s. Then we headed to the grocery. Even though I had a list, we ended up with more than intended. Gratefully, it was all things that we routinely use.
During the morning, I began taking her blood pressure every hour or so. Her blood pressure had been so high and the Cardiologist’s office on Thursday that it was pretty concerning. Her morning meds included a whole Midodrine tablet with the purpose of keeping her BP up so that she doesn’t faint, on account of the Orthostatic Hypotension that has given her such difficulty.
I started at 8:17am, 220/115. Then ranging from one hour to three and a half hours apart after that her blood pressure measured, 200/110; 160/85; 185/100; 200/100; 200/105. I took it one other time when it the systolic was 200, but I didn’t get the diastolic.
I could not bring myself to give her even 1/2 of a Midodrine tablet for her midday and suppertime doses. I know it is not good to stop meds cold turkey, but it just seemed crazy to give her meds that raise her BP when it was already dangerously high. One thing that caught my ear was the Cardiologist’s ARNP mentioning the fear of a massive stroke. I had mentioned that Mary Ann already had a stroke. Angela responded immediately with that concern. Mary Ann’s stroke was not a bleed, but a cluster stroke (bits of plaque, probably from the ulcerated lesion on her carotid artery). Nonetheless, it is hard to accept blood pressure that high without major concern.
The last couple of days there has been some swelling of her feet. She has not had that problem very often. When she has had swelling it has gone down the next day. Two days in a row catches my attention. She has not had the heaviness in her chest and the ARNP, Angela, did not hear any crackling in her lungs, the sign of problems with fluid build up. I need to remember to weigh Mary Ann in the morning to see if she has gained any weight. That is another of the signs of potential congestive heart failure.
Today, the hallucinations have emerged a bit. When she started eating tonight’s two scoops of Baskin & Robbins, she asked Ashy if she wanted any. She saw our youngest Granddaughter sitting in the transfer chair a couple of feet away from her. That Granddaughter is currently living in Kentucky, not in our dining room.
One of the choices we have to make for the remodel/addition of a Sun Room at the back of our town home will be vertical blinds to cover twelve feet of glass for the sake of privacy. Stacey brought a sample book of blinds that seem ideal. Mary Ann has gotten in her mind that there is another sort of blind that would be better. The problem is, it does not exist. She looked through the latest Martha Stewart magazine and has become convinced that she sees there what we should choose. She said there are many examples throughout the magazine. I paged through the entire magazine with her. There were a couple of pages that had what she decided she liked. They were pictures of an open porch with no blinds, just greenery, vines and bushes in the yard the porch is overlooking. Then on another page she pointed to some large pictures of pink and red nail polish she said were the weights at the bottom of the blinds.
I could do nothing but tell her that we could not find blinds that exist only in her mind but do not exist in a way that we could actually buy and install. This one is going to be tough. I have absolutely no doubt that as long as we live, she will routinely mention that we did not get the blinds she wanted for those windows and sliding glass doors.
Mary Ann’s ability to feed herself simply was gone today. At breakfast, I assisted her as she worked to get the pills into her mouth. I fed her the yogurt and held the cup and straw to her mouth. At the restaurant at lunch, after I buttered them, cut the pancakes into bite sized pieces and put syrup on them, she got the fork in her hand with my help and was determined to eat the meal herself. After an interminable amount of time, in which I had long since eaten my entire meal, she was still frozen in place with her hand lying in the pancakes, holding her fork wwith her head down near the plate. On occasion she tried to get the pancakes up to and into her mouth, but no pancakes ever remained on the fork long enough to make it in.
I offered to help a number of times. A couple of times I moved her hand with the fork in it so that some pieces were stuck on the fork. She still could not seem to get them to her mouth. Finally, she agreed to let me put each fork full into her mouth. I did the same with the bacon, and with the straw in her Coke. She ate most of the food on the plate.
At supper at home the same thing happened, she could not get the food to her mouth. What seems strange to me is that she refused to let me help her even though we were in a completely private setting. She ate almost nothing. When I returned with the ice cream from B&R, she could not manage that on her own either. After a while she did let me help her eat the ice cream. I can only guess that she really likes pancakes, bacon and ice cream, so she allowed my help. She was not so fond of the ham and cheesy potatoes at supper, so she was not so motivated to accept the help.
After getting back from the grocery this afternoon, I worked on filling the pill containers for the week, while Mary Ann watched television. Her head was hanging on her lap much of the time. One of the times I came over to help her sit up, she said one of the things that always triggers feelings of guilt and some helplessness. I don’t remember her words exactly, but message was: I am bored sitting here all the time doing nothing but watching television, and I am just wasting away. The implication was: you aren’t providing me with enough activity and stimulation to provide a decent quality of life for me.
I have talked about this in earlier posts. I do feel guilty about not providing her with more attention and engagement. My rationalization is that my life already revolves around her wants and needs all day every day and all night every night. There are two truths that sort of intertwine as I process what she said. One is that I really should do more to engage her attention and improve the quality of her days. The other is that she has Parkinson’s Disease and Parkinson’s Disease Dementia and there are resulting consequences and limitations that I cannot fix. I cannot give her the life that has been taken from her by the disease.
One goal in processing this issue is to keep my feet to the fire to try to come up with things that will keep her interest. My hope was that the lunch out and the trip to the grocery would help. Tomorrow I hope to get both of us going early enough to make it to the 11am worship service followed by a meal out at a nice restaurant that we both like. Then later in the day will come the Superbowl. She loves professional football and will enjoy watching the game.
The other goal in processing this issue is to accept my own flaws and imperfections and let go of the guilt and frustration that I am not doing more. This has actually been a better than average week in one regard in particular. I don’t think I have said a cross word to Mary Ann this week, nor have I felt like doing so. Sunday morning’s experience seems to have had some residual effect. I have no illusions that the change in attitude will remain, but it has felt good to set Grumpy Caregiver aside for a few days.
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The Caregiver Calling 