1. < Caregivers: Dementia

Husband diagnosed with MCI, meeting criteria for probable CAA.

Posted by cdk @cdk, Nov 10 9:21pm

I have no one I can talk to and I'm hoping to find others with similar situations. I first noticed my husband's symptoms in about 2008, not only in memory issues, but in cognition. His thinking just slowed down. He couldn't keep up with conversations. He developed a disequilibrium and the need for a cane as his gait and balance changed. He consulted various MDs and we modified every variable we could think of: his meds, his oxygenation, (started CPAP,) his pacemaker, etc, etc. He notably developed the habit of writing everything down, though he forgets which notebook, and so on. (He has also had four episodes of transient global amnesia in the last twenty years without evidence of any sequelae.) At the end of June he saw a neurologist who compared his MRIs from 2019 and 2021 showing increasing punctate foci in lobar regions, and that he meets the criteria for MCI due to probable cerebral amyloid angiopathy (CAA). I have been adjusting all my days to the fact that he's not going to get better, and I am unprepared for all the new symptoms he presents. In the last few weeks he has begun singing and humming in a high pitched voice for hours at a time, just making noises, and he flops his right arm around with no apparent knowledge that he's doing it. Now he is starting to hallucinate, seeing things that are not there. He can't have another MRI until March because of personnel issues at the medical center related to his pacemaker, so it just feels like we are free-floating, waiting for the next symptoms. I wish I could help him more and I wish I could help my own stress as well.

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joedeb | @joedeb | Nov 16 11:24am

Those are great reflections. I'm sure the social opportunities would be better than I can provide if my wife was in the right place. We have sniped at each other several times in the last few months. A hard decision..

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joedeb | @joedeb | Nov 16 11:32am

I think it depends, also, on the persons condition and needs upon entering a care facility. In my case, with my wifes declining cognitive abilities, social life or activities might not be utilized. She will spend the large part of some days now hallucinating and talking to imaginary visitors. She has difficulty expressing a clear thought and carrying on a convesation. Her medical condition, outside of dementia is quite normal for a person her age. I have learned about the difference in placing a person in a memory care facility and a skilled care facility. Around here, there is a waiting list fo skilled care but multiple openings for memory care.

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cdk | @cdk | 4 days ago
In reply to @marketlink "Hi. I’m hiding in the bathtub as I’m reading your post and it so resonated with..." + (show)
@marketlink

Hi. I’m hiding in the bathtub as I’m reading your post and it so resonated with me. My hubby was diagnosed with MCI and depression earlier this year, even though I’ve been noticing symptoms for years now that I’m aware. The antidepressants are helping with mood swings but Im noticing that the MCI symptoms are getting worse. Side note - he thinks he doesn’t have MCI anymore because he’s feeling better on the antidepressants. We are on a quick vacation right now and in the last week he has lost two credit cards, fallen off of a chair in public while tying his shoes and was having trouble keeping the golf cart on the path today. He’s also started talking at elevated volumes and is childlike quite often in his responses (like cheering and clapping during a domestic abuse movie?). Our Counsellor is saying they are all front local executive functioning errors.

I was hoping it would all stay stable but I’m scared of what the future holds for both of us. Big hugs to you as you go through this as well. I don’t have any sage advice. I just wanted you to know that you aren’t alone. I think this may be one of the most difficult challenges I’ve faced so far. This forum is great though … especially if you just have a bad day. 💕💕

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Thank you for writing. Things seem to be progressing faster now. He now has involuntary right-sided movements, quite strong arm flapping and realistic hallucinations, as well as orofacial issues, tongue biting, and able to tolerate only soft foods, and losing too much weight. His speech is becoming difficult and slurred when he can find words. Stroke and seizures and Alzheimer’s have been ruled out. It’s the MCI and microbleeds. Losing him every day is just so sad. Lots of lucid times too, that quickly flee. This is very lonely, as you know.

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1 reply
cdk | @cdk | 1 day ago
In reply to @cdk "Thank you for writing. Things seem to be progressing faster now. He now has involuntary right-sided..." + (show)
@cdk

Thank you for writing. Things seem to be progressing faster now. He now has involuntary right-sided movements, quite strong arm flapping and realistic hallucinations, as well as orofacial issues, tongue biting, and able to tolerate only soft foods, and losing too much weight. His speech is becoming difficult and slurred when he can find words. Stroke and seizures and Alzheimer’s have been ruled out. It’s the MCI and microbleeds. Losing him every day is just so sad. Lots of lucid times too, that quickly flee. This is very lonely, as you know.

Jump to this post

Thank you for your hugs. It means a lot that you are here. His MRI has been rescheduled for this coming Thursday and his neurologist has sent more labs for autoimmune screening. Has anyone here had dementia from autoimmune encephalopathy? His deterioration has been so rapid these last few weeks he’s almost unrecognizable. I wonder how his CAA contributes to all this, if there is any hope that treating autoimmune encephalopathy (if verified) could reduce his most destructive symptoms. Maybe I’m finding hope where there is none.

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