“Hold on to what you must do
even if it is a long way from here.
Hold on to life
even when it is easier letting go.
Hold on to my hand
even when I have gone away from you.”
—Native American Prayer
Dementia: A Loss for Everyone
The mother I have known all my life is gone. She hasn’t died yet physically, but she is so delusional and paranoid that she no longer wants me in her life. I have tried to help her through her fears, but if I try to help her see that what she fears isn’t real or isn’t happening, she gets angry. When I agree with her that things are terrible or tell her I will talk to someone about it, then I feed her delusions and keep them real for her.
Last week the doctor ordered an abdominal ultrasound. I wasn’t told why at first, and then I was told it was to check the stent they had put in earlier in the summer. The fact is she never had a stent put in because the doctor wasn’t able to do it. Why didn’t her current doctor know that? I still don’t have the results of that test after I have placed numerous calls to her doctors to ask them to call me. The morning after the test she told me she saw a man in the room where she had the test. He was in the wall and then she saw him in the mirror, the same man who had come into her room at night several times. Then she thought during the test they had put the man inside her. She was worried that since he wouldn’t be able to eat in there, he would die and then so would she.
This week she has claimed that her roommate (the second one she has had because she accused her former roommate of trying to kill her) is trying to scare her by making noises at night and screaming. Of course, none of this has happened. But I have not found a way to reassure her that she is safe. The aides have told her they will sit outside her room at night and protect her. However, they apparently can’t protect her from her roommate.
A few days ago she told me she thought the aides had given her some drug to try to kill her. She woke up at 4:30 a.m. (changed it to 12:30 and then to 3:30, with no idea what time it was) and didn’t know where she was. She said she was fully dressed but in bed, so she got up, saw her nightgown on the bed, and changed into it (an activity she can’t do by herself and any movement out of the bed would have caused alarms to go off). She then said she took something out of her mouth and held it in her hand, but she didn’t know what happened to it. How am I supposed to react to such delusions?
I tried to console her this morning when she finally called me. Instead, she told me she never wants to see me again. She will find someone else to help her, she said, and hung up. I was going to visit her today after staying away for a few days because of a cold, but I will not be seeing her again for awhile.
I know her dementia is advancing and a recurrent UTI is affecting her thinking. Still, I have been through this with her at least three other times and I am tired. A year ago she was still the mother I knew. Now I don’t know who she is. I feel helpless and discouraged. I know other women my age must be dealing with similar situations with aging parents diagnosed with Alzheimer’s or dementia. I wonder about my own future, especially at those times when I can’t remember someone’s name or what I needed at the supermarket or why I went into another room.
My mother has had several minor heart attacks and several small strokes. None of those killed her. Instead, she is trying to cope with increasing paranoia and delusions because of advancing vascular dementia. She has no one to help her through it and it will eventually result in death. I love her with all my heart. That will never change.