It is almost 11am, Saturday morning, and Mary Ann is still sleeping. I wrote no post last night since I was especially tired. The two nights before last were not wonderful.
Yesterday, Mary Ann was again very tired all day long. The hallucinations/delusions/dreams mixed with reality continue. Yesterday morning she asked me to check on the towels. I confirmed that she meant the towels for the people she is convinced are living downstairs. She admits that she thinks I am lying when I say that they are not here at the house. I offered to take her downstairs. I think the bed is not made but has the clean sheets folded on it. The problem is, not only would it be almost impossible at this point to get her down and up the stairs by myself, but she would probably just conclude that they cleared out for the moment just to fool her.
We did not get out yesterday except to make a quick circuit to get my coffee and a take-out luncheon Lasagna from Olive Garden for Mary Ann. Later in the day she opted not to go out for ice cream but eat what we have from the store here at the house.
I don’t know if this is actually a decline or just temporary, but the confusion becoming a routine part of each day, increased fatigue, and the reluctance to go out is a little unsettling. Maybe it is still the Urinary Tract Infection. She is done with the ten days of anti-biotics. We will be getting a specimen for the lab when she gets up to see if it is actually gone.
…Mary Ann is up now. She got up at about 11:15am. She ate a usual breakfast and then sat for a while, pretty much dozing most of the time. Understandably she did not want to lie back down even though her head was hanging.
When I asked about lunch, she said she did want to go out. I was apprehensive since she appeared so tired, but it seemed worth a try just to get both of us out of the house. When she stood up to put on a light jacket, she ended up having a major fainting spell. After she came back around, she still wanted to go out. She, of course, has little awareness of the fainting. I rolled her to the door to the garage and she walked down the steps as usual (she handles steps better than flat surfaces) into the garage. Before I could get her into the car, she had another major fainting spell. I have four folding chairs lining the garage wall along her side of the car, so that one is always in reach. I grabbed one and got her in it before she went down to the floor. I have put the colorful foam playroom squares along her side of the van so that if she does fall, the damage will be minimized.
I finally got her into the car, and we made our way to Perkins. Since she was in the wheelchair except when transferring from the car and into the chair in the restaurant, she did not faint during that outing. She managed to eat a few pieces of pancake on her own, but then she allowed me to help her eat more after ceasing to be able to get them speared and into her mouth.
When I got her out of the car back at the house, she had another major fainting spell. After she was awake and able to stay seated in the folding chair by herself, I prepared the portable ramp into the house and got the transfer chair. That way i was able to get her into the house. As always, she needed a trip to the bathroom. She fainted again there, but this time it was not a major outage. By the way, when I refer to a fainting spell as a major one, it means after jerking and stiffening for a few moments, she goes limp. Then she remains out for a minute or two (rarely it is many minutes up to a record fifteen). During that time she is snoring as if having a spell of apnea, sort of gasping for breath, and saliva comes out of her mouth (my sleeve usually gets wet since I put my arm across her chest to keep her from falling out of the chair). Gratefully, she is completely unaware of all of that and remembers nothing of it. She sometimes seems to think I am making all of that up, that she does not actually faint. Since she has no conscious awareness of the fainting spells, she has no natural reticence to getting up and heading out no matter how many times she has fainted.
When Hospice Nurse Emily came to pick up the specimen for the UTI lab test, I asked her to take Mary Ann’s vital signs since Mary Ann had appeared to have labored breathing and admitted to having some difficulty with her breathing. Her vitals were fine. The blood pressure reading was 158/92. That reading came after there had been some fainting spells and before we headed out for lunch, experiencing a number of major spells. That reading would be high for anyone under normal circumstances.
Here is my dilemma. Do I add back into her medication regimen the Midodrine that raises her blood pressure all the time. When she is on the medication, it is as high as 220/120 in the mornings and goes even higher sometimes when measured at doctor’s appointments. Many months ago, when she was taking a full therapeutic dose of Midodrine, we were able to do much more in the way of traveling, eating out, participating in activities. We have long ago decided that the quality of our time is more important than the length of it.
As I write, I would like to be attending the wedding of the daughter of a family of which we think very highly. Her Mom was on the Staff at the church from which I retired. I have enjoyed their kids and value them as friends as well as former parishioners. If that is not enough, one of the Pastors doing the wedding is a young man whom I watched grow at that church, and had the privilege of Ordaining into the ministry not long ago. Lot’s of folks whom I came to know and love during the twelve and a half years as part of their lives will be gathered there. I take some comfort in the fact that I am at the moment doing exactly what Katie and Jacob are promising to do, what I promised to do over forty-four years ago.
Tomorrow is the day of the concert in which I will sing as part of a trio in a larger choral piece. It would probably be a good idea to get a good night’s sleep tonight. Mary Ann is in bed and appears to be sleeping at the moment. Here is hoping that she sleeps well throughout the night.
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