Husband diagnosed with MCI, meeting criteria for probable CAA.

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. 💕💕

This sounds so similar. Thank you for being here. Also scared of what the future holds.

I know this is a sad response for you to hear. I have 5 siblings. Our mother started doing all of the things above, and at the time she was living in an apartment about a half a block from my brother's (a physician) home. After neighbors and police complained, and she refused our efforts to pay for a home health aid to come into her home to clean, grocery shop, cook, etc., She refused contact with anyone but her kids. So she was admitted involuntarily, and diagnosed with late stage dementia, alzheimers, bi-polar mood disorder. So since then she has been moved to various dementia care centers. The psychiatrist told us all that if we moved her into our homes, she would destroy your home life and family.. My sister ignored this advice, moved her in and it was horrible, screaming, rage, etc. and she wouldnt take newly prescribed meds to control depression, mood etc..so at least the memory care centers are successful in getting her to take her meds, which they crush and disguise often in her milk etc..we have been visiting her for man years. I often see wives mostly visiting their husbands in the facility too...it is all very depressing to me still, since she is in Maryland and all of my siblings live far away in other states (CA, TX, NH, IL)..so seeing her feels like a preview of my future too..and now the monthly rate will jump to a bit over $11,000 monthly starting January. I am always researching to find ways hope for new meds for me and my siblings to avoid dementia etc...but so far not much hope...feel like I will be just where she is..sorry to be such a downer...but here is something positive..I visit her when I am feeling good about myself and my life, and we at times laugh, smile, make pictures, and enjoy looking at beautiful sky...not much conversation, but her eyes are bright and pretty still even though she doesn't really know who I am anymore..

I'm sure you've explored possibility, but might she be eligible for medicaid that could cover the cost of memory care facility?

Not nearly as severe but I'm going thru similar bouts with my wife. Her gait has definitely changed and she has begun using a cane to help her balance. She's been on memantine since diagnosed with MCI almost 2 years ago and on CPAP for about a year. I think memantine has helped, not so sure about CPAP, especially since she rarely has it on all night long. She may be starting to see things in the night that are not there along with her facial look of distance and not being in the moment happening more and more. No driving a car at all since this was diagnosed as her decision making can be quite labored, and too often incorrect. I'm her caregiver as the cavalry is not coming and there is no cure in sight. Patience, patience and more patience!

It's sinking in that there is no cavalry in sight. Thank you for writing. It's a good point about labored decision making, and my husband still drives, short daytime neighborhood drives. We'll have to address this soon, particularly now that hallucinations occur. I drive him to all his medical appointments.

Iwent from a full time 80 hour a week farmer to fulltime caregiver in 3 months with my wife. She started having MCI about 2 years ago and now is diagnost with lewy body diementia. She seems to be moving fast. It is a lot of work. Probably one of the hardest things I've ever done. This may seem gross, but I have been a livestock farmer for 50 years in all kinds of lousy conditions. Maybe that was all training.... We have a great neurologist. He caught the disease early it sounds like. We started treating my wife with parkinsons meds as a prophylactic. She is now on nuplazid, the new, expensive med designed especially for hallucinations and delusions. I don't know if its working or not. She still has them. I am told it may just slow the progression. I have read about the endgame with lbd and I think it is approaching faster than I like. It;s amazing how little is known about dementia and how much research is going on.

I am so sorry that you are dealing with this. I totally understand. My husband has Parkinsons. He is frustrated and discouraged..I try my best to help him. My father had LBD with his Parkinsons..He saw dogs and people that were not there.My brother also has LBD and Parkinsons. I bet you are thinking how come so many? I wish I knew. Hugs to you and your wife. Kudos for stepping up. ❤️

You are not alone. Many of us here are dealing with a spouse with MCI and dreading what the future may hold. I have shared much of my journey on this platform. I found it one day when I was taking a walk and crying my eyes out about something my husband was doing that scared me.
Every day there is something else that I call "wonky". He hates that word and would rather me say "meshuggah".
Hang in there and write here. It is helpful for us too. Thank you for sharing.

Meshugga (sad face, I don't know how to access emojis on my Chromebook).