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Husband diagnosed with MCI, meeting criteria for probable CAA.
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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This is just such a difficult situation to be in. No one understands it until they become a caregiver. When a loved one can no longer drive, shop, cook, manage money and medication, etc., the caregiver essentially gives up their entire life and future for an unknown length of time.
It only gets worse when the loved one can no longer dress themselves correctly or figure out the mechanics of using the restroom. As I have learned, others mean well, but there is no REAL help. Your loved one needs constant assistance.
You will find much support and many good ideas here, and on similar forums for caregivers. We toil away in silence, mostly hidden from society. There are 53 million unpaid caregivers in the US alone. When my dear wife was still able to travel, we used to say this: For every gray-haired tourist you see on a tour bus, there are two others trapped at home as unseen caregivers. Now I am one of those unseen caregivers.
For reference, I have been caring for my dear wife with vascular dementia for nine years. My life as I knew it just stopped suddenly in 2015.
Hang in there, and know you have support here.
Love Bill2001
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6 ReactionsI'm learning tht this is a shared experience. Thank you for the hugs. It helps me to read of others dealing with the disease. I fear of other simple health issues like colds, upset stomach, etc. becoming much biggr issues.
It took me a while to learn the different types of dementia. My wife did not really had any parkinsons like symptom before her dementia onset. She was clearly heading for LBD.
How does one decide when this is too much to do at home? I am a firm believer that staying in ones home as long as possible is the best for us and for the whole elder care system. Some points in time will be easy: rapid decline in health.
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3 ReactionsI would highly recommend a wifi camera system in your home. I have one by her bed, one in the kitchen, and one near the laundry. It has given me some limited freedom. I can monitor her on my phone. It's private and reasonable to buy and install
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2 ReactionsIt can be lonely being a caregiver. I learn something new every day. Yesterday, my wife was scheduled to go out to lunch with a very good friend of hers. I went through extra effort to get her showered, hair washed, and dressed nicely, feeling good about myself, to only have her get an upset stomach. We had to cancel the lunch and the rest of the day went downhill. But today is off to a good start.
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2 ReactionsI found this vidoe good for caregivers
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2 ReactionsI asked my husband's preference if I could no longer care for him, and thought I'd better ask while he's still fairly competent, cognitively. He said he prefers to stay in our home, so I may need help here someday.
I read everyone's posts to try and stay on top of things.
Thanks.