Is there anyone here who has had loved ones with Primary Progressive Aphasia or advanced small vessel disease??
Mom is 94. She was fine (relatively speaking) yesterday until about 4-4:30. Then she had a hard time walking. She sat down for dinner, chewed her food, and spit it out. She refused to take her meds. Her speech (aphasia) was terrible. She would not sit still, got up from her chair (with help) and stood in front of the TV as if the people were in the room. When I took her into the bathroom, she just ran her finger around the edge of the vanity bowl.
Today, she has slept most of the day (until about 3:00). When she woke up, I could not understand a word she was saying. Her balance is way off. She has fallen yet again. She would try to put Depends on over her pants. She will sit in her chair, and get up. Walk around (with help) and sit again. Then repeat.
She is receiving palliative care from a hospice program, so she won't be going to the ER or other doctor for treatment.
I call what she is doing "episodes," but I don't know what the cause is. The last time she did this was exactly one month ago. I asked the hospice nurse then what was going on and she said it could be that blood flow is reduced.
It is hard because I don't know how to handle someone with a degenerative neurological disease. I understand this is similar to what people experience with dementia-type patients. I think I can reason with her. But raising my voice (when I want her to stay in her chair so that she doesn't get hurt -- thinking she would listen), or by explaining to her calmly that she is going to fall if she doesn't stay where she is, but neither works. Then I feel bad when I raised my voice.
On days like this I wish it was over. Then I feel guilty yet again... I know she doesn't know what is going on. Seeing her still mobile, makes it even harder. I am with her almost 12 hours a day/7 days per week.
Has anyone experienced anything similar and shed some light on what I am dealing with?