Dealing with a Spouse with a “Mild Cognitive Impairment”

Hi, there was a year between my husband's MCI diagnosis and Frontotemporal dementia diagnosis.

Thank you.

Thank you for sharing your personal information on this journey. I'm interested and certainly not bored. My wife was diagnosed wtih MCI about 8 years ago. Her early symptom was short term memory loss. This has progressed to some intermediate term memory loss but the most profound loss now is executive function. I would like to have her retested by a neuropsychologist, but I'm afraid that the result would be very traumatic for her, so I've not sought this. I'm a retired internist (and board certified in geriatric medicine also), but it is hard for me to be objective. And her condition is further complicated by active alcoholism.

I am encouraged that she has 8 yrs between MCI dx and current state. Looking back I suspect my Mom, who died at age 83, had MCI ~ 70. It is difficult to peg my own onset. For me I was still productive as a banking risk exec at 70- but occasionally heard from my team “you already mentioned that”. There are numerous defenses for that scenario, but I suspect that was the beginning of noticeable decline. I always hoped I would have the grace to retire before my skills began to decay. So I retired in 20, did a short term gig for a couple of years and then retired for good.
Before Risk Management I had a 10 year career in Neurophysiology and Hospital Administration. So i have been putting that limited knowledge to work finding a neuro doc, getting all the tests except pet - only because m’care won’t cover it. I may self pay soon - but I have all indicators of increased risk for AD.
Is your wife on any of the available meds? I just was reading about a new sleeping med that seems worth learning more about - Belsomra (suvorexant).
So far the benefit seems marginal on the available Rx. But that is summary level analysis.

I told you I do go on. My full time job is seeking any credible or possible path to delay, defer, or defeat. Keeps me busy between puzzles 🙂

Take care.

My wife complained of memory loss long before I noticed it. And I think her decline has been slow and subtle, with changes noted more in retrospect than in real time. She has not been tried on any of the limited meds currently available. My professional experience was not gratifying and the side effects are troublesome to many. It has been discussed with her primary care physician, who feels much the same as I do. My wife has a masters degree and taught elememtary education 40 years. She spends her time doing crossword puzzles and sudoku. One other observation that is obvious is that she cannot follow the plot of TV dramas and movies, so she mainly watches new shows and talk shows. We watch Jeopardy together, and she occasionally blurts out a correct answer to a difficult question. This is a strange and highly complex and variable spectrum of "diseases". Your writing skills and background suggest you are highly educated, and I believe highly educated/intelligent people mask their disease for a long time. I wholly support your path to delay, defer and defeat your condition. So far evidence supports that physical activity, social engagement and mental exercises are helpful. I think the real hope is in a medical breakthrough in treatment and/or prevention. We just have to hang on long enough for that to happen. I wish you the best. I'm 81 and trying to stave off my own decline (nothing noticeable at this time mentally but plenty physically).

If I could do one trial it would be the one at west VA where the doc is opening the blood brain barrier to direct drugs where they need to be - with ultrasound of all things - and it CLEARS plaques. . but it has a risk of brain bleed. I have one instance of APOE4 which also carries risk so they won’t accept me.

One med will eventually have a Eureka moment. I hope i am still around. 🙂

May only good fortune travel with you and your wife.

Amen!

This is an awful lot to deal with and I'm sure being a doctor is little help. We're all reduced to the same level eventually. I hope you have plenty of support. Don't be shy about seeking out understanding people. Perhaps some former patients? Best of luck. Hang in there.

Interesting about journaling… I have so many different journals on hand but over the last year I’ve moved on to creating a “Commonplace book.” It’s set up with a topical table of contents and color coding so multiple topics can be recorded.
It started with sections for quotes and recommended books and movies and various creative plans, pluse pages on things that bring me joy.
Now it’s mostly filled with resources, notes taken during support group meetings, conversations with doctors, etc.
in a way it reflects my actual life during this time better than any other journal I’ve ever kept.

My spouse of 52 years was diagnosed with MCI last year. We have 3 children who all live out of town. We speak to all three together at least once a week. After our last phone call, my husband lit into me for taking over the conversation and leaving him out. He doesn’t hear well and has a hard time keeping up with the conversation. We have had this issue before and I told him as soon as he wants to say something, I will be quiet. This time he was dosing for most of the conversation and then was very upset after we hung up. I told him I want him to participate but I really don’t know how unless he tries to say something and then I let him talk. I told him moving forward I would say “what do you think” or “how does that sound to you” to try to give him the opportunity without it being on him to join in. A lot of times when he does have something to say it’s totally out of context, but we know the problem and just let him talk. Any suggestions as to how to handle this. I want him included in the conversation but the hearing (he has hearing aids) and the comprehension level is a problem. I really feel he knows he has a problem and wants to take it out on me. I’m a fixer and want to have a solution.