Is there anyone here who has had loved ones with primary progressive aphasia or advanced small vessel disease? - AgingCare.com

Is there anyone here who has had loved ones with primary progressive aphasia or advanced small vessel disease?

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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?

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Thanks for the clarification, OldSailor. It is a strange disease. Her MRI in 2016 showed "Advanced small vessel disease." Nothing was done to monitor it. (She was not referred to a neurologist.) Mom really got bad about 8 months ago. That is about the time that her blood pressure was very low. The lack of blood to the brain from the low pressure and the SVD contributed to what she has now (my diagnosis since no doctor ever did). I finally got her GP to listen to me and one of her high blood pressure meds was stopped. But, the damage was done. It may have effected the Weirnicke area of her brain.

Most times she sounds like she is speaking a different language. Yesterday, she said something that I didn't understand. I responded anyway. Then she said, "You didn't answer my question." You just never know when the connection is going to be made...
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Mapotter, I apologize for talking like I was referring to may Mother. I was talking about my 74 year old wife of fifty years. She was diagnosed almost two years ago. She showed some signs before that but it was brushed off as the old age memory thing. Then bam! she was suddenly really bad and stopped driving and playing bingo.
She drew the strangest clock I have ever seen when she was tested.
Sometimes I can ask DW what she wants and use my imagination to pick a subject such as food or bathing. Some times it works.
You might be able to use flash cards with subject on them to see if your Mom can get the right question for you. Many with PPA can read but can't talk straight.
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OldSailor, Thank you. Wow. Prayers to you. Sounds like you have it worse than I do. That should give me pause before I overreact. I am sure Mom will get worse as the disease continues if she does not pass before that.... How long has your Mom had it and what is her age?

Mom has wanted me to go to bed with her (as well as my brothers :-/).... But, I just tell her I am not going to sleep now, or that I am sleeping in another room. The speech is the worse though. I just pretend I know what she is saying. Most times I just say that I don't know what she is trying to say (simply because she may be looking for a specific response that I cannot give because I don't know what she is saying.) Her sentences are filled with words that don't make sense. Then one time, she will say something coherent. Today, she was mumbling and repeating words like poetry. She started out two years ago getting frustrated because she couldn't get the right words out. Now, what she says rarely makes sense.

OldMaid, Thank you. I do have aides coming at night 5 days per week to keep her out of trouble since she is up a lot at night. My oldest brother, who lives with her, has his own health issues and has to be able to sleep at night.

I did notice that one side of Mom's face was a little droopy today. Maybe she had a small stroke... Or it was because she was sleeping on that side (and the old skin does not go back to where it was that quickly -- as we all probably know :-/...) At 9:00 tonight, she was better from what my brother said. I will see how she is tomorrow...
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Hi,
It sounds like you definitely need some help. Could you hire a nurse's aide or get a volunteer from your church (as long as you were in the house in case of emergencies)? It must be very difficult. I will pray for you and your mom.
Sincerely,
Old Maid
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Yes I am. I am learning that the aphasia goes both ways. Into the brain and out of the mouth. Why won't they listen and obey? Heaven only knows.
I can talk my head off and she will not follow instruction. She doesn't fall and walks very well for he age and condition.
Explaining things has done no good. She does what she wants unless it is really dangerous and I step in. She will put clothing on top of clothing, up to three blouses and, so far, two pair of slacks.Diaper on the outside, etc. Has a compulsion to pour water on or into everything, like the peanut butter an empty plate, the counter or table, and I think the floor. Sometimes she waants to take two baths a day or shower after getting out of the tub.
I told her yesterday to get dressed so we could go out and she went to bed instead.
The only import thing in her life is what she is set on for the moment. Explaining things does no good. There is no logic left in their sick brain. She will open food packages in the store and eat the contents without paying if I am not watching closely.
When shopping I try to put her into a wheel chair to have better control. She does like to stop and straighten the shelves and in this she is usually right.
I think she has sundowners because she will do the sit down and get thing most of the night. Nothing stops it.
She always wants me to go to bed with her and as soon as I am asleep she gets up. Then when I get up she goes back to bed.
She may need to go to the bathroom but doesn't recognize the symptoms or will use a very strange sentence ( like; should I go to the power). She has messed in her diaper and never said a word to me until she can't get her clothes off.
How do I deal with it? I just have learned to watch and listen as much as possible. Her Body language helps me some. Imagination helps a little.
My list goes on and on. Yours may be, and probably will be different. And yes she does have a lot of trouble forming sentences and speaking.
I wish you the best of luck and patience. Take care of your self and look for a companion to sit with her so you can take a break.
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