Last night Mary Ann told me that they were trying to trick her. They were trying to convince her that she was not in her bedroom. That is a Delusional Misidentification Syndrome called Reduplicative Paramnesia. It is the belief that a familiar object is actually a substitute for the real one.
Those whom Mary Ann calls the Thursday people were back. I think it was they who were trying to convince her it was not her bedroom even though it looked just like it. At least one other time during the night, she asked if the people had settled down yet. As I have mentioned before, I do not want to reinforce the delusions and hallucinations, but I don’t want to dismiss them since they are real to her. I try to explain that they are not real in a way that I can see them or do anything about them. Gratefully, she is not terrified by them. Hospice Nurse Emily confirmed that today when she asked Mary Ann about the hallucinations.
The problems related to what information her visual cortex sends to her awareness are one of the signature symptoms of Lewy Body Dementia and the Dementia that comes to some Parkinson’s Patients. It is the problem with delusions and hallucinations that often force the issue of using residential care. As challenging as they can be, with the help of Hospice, I am determined to avoid any residential care other than perhaps a respite day some time. So far the hallucinations are not so strong and so constant as to be impossible to handle.
Today, again, there were multiple events of syncope (fainting) associated with trips to the bathroom. I suspect that I held her up on the stool upwards of a half hour adding together ten or fifteen minute segments. When Hospice Nurse Emily took Mary Ann’s blood pressure this afternoon it was 118/68. That would be good for a twenty year old. When it starts out that low, it can, of course, go much lower when she stands up. I have been trying to manage the fainting without resorting to the Midodrine that raises it. The high BP is so harmful to her heart and kidneys especially. If it remains that low, I may need to reconsider restarting the Midodrine. The Cardiologist has given me the freedom to decide whether to give her the Midodrine based on our quality of life. The preference is to avoid using it. Those sorts of decisions place a lot of responsibility on my shoulders. Yes, I am the one with the best vantage point for making the decision, but I feel the weight of that responsibility.
Gratefully the fainting spells were over just before Hospice Aide Sonya arrived at 11am to wash her hair, give her a shower and get her dressed. Sonya said that Mary Ann did fine. After the shower, we headed out to do errands and to pick up lunch for Mary Ann. It was a favorite of hers, steak soup and lemon meringue pie from the Copper Oven.
Again after Nurse Emily left in the mid-afternoon, we headed out for errands. During that run, I picked up some flowers for Mary Ann. Daughter-in-Law Becky had won a commitment from me to get Mary Ann flowers regularly in trade for adding our cell phone to their account. Do you see why we think so much of our children and the ones with whom they have chosen to spend their lives?
Of course that trip had to include a stop at Baskin & Robbin’s. Those of you who have been paying attention will probably want to remind me that late afternoon ice cream treats ruin supper and make for tough nights including lots of snacks. I know! But the ice cream tastes so good. She went to bed not too long after 6pm, and yes she has already gotten up to eat a sandwich and some applesauce. That was around 9pm. I hope that is enough to get her through the night.
Even with all the ice cream, I reported to Nurse Emily that Mary Ann weighed in at 113 pounds yesterday. That is down from the last time, 114.5, but up from the time before that, 112.5. That is about 10% less than she weighed not too many months ago. At least she seems to be holding her own at the moment.
There is one way in which her weight is an advantage. Most of those who post in the online Caregiver Spouses of those with Lewy Body Dementia are women caring for their husbands. A number of them in the last couple of days have talked about the predicament of having their almost 200 pound husbands fall, leaving them unable to get their husbands back up. Most of them have had to call 911 to get their husbands back up.
I am grateful that Mary Ann is light enough for me to handle most of the time. Reading those posts, I appreciate how easy I have it by comparison. I feel a little wimpy when I have trouble getting her off the floor. It all has to do with where she is located when it happens, whether I can get her in a position that allows me to pull her up and whether or not she is alert enough to help in the process. When she is partially asleep or feeling very weak, picking her up from the floor with no assistance from her is almost impossible for me to do without risking damage to myself, thereby rendering our system unworkable. We do have a Hoyer Lift to use if she is located in a position that allows me to get the sling under her.
It is getting late, and since i have had to get up fairly early each day to prepare for the workers on the remodel project, I am anxious to sleep in a little while tomorrow morning. That will be up to Mary Ann.
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The Caregiver Calling 