Denial of MCI - how does spouse/caregiver cope?

Good morning, @ihanrath I'm not sure what part of your husband's and your difficult journey you are seeking suggestions with, but I'll give you a couple of my thoughts based on my caregiving years. I know everyone's unique, but in my case, I knew things about my wife and MIL's condition far before the doctors and would act on that knowledge as best I could as fast as I could. Kind of 'if it walks like a duck and quacks like a duck, it's probably a duck". Denial is a tough attitude to break and in the case of when someone's brain is 'broken' for whatever reason, I realized I had to be the one to take action for their good, their safety, to protect our assets, etc. I simply couldn't wait for a 'formal' proclamation from a medical pro when I pretty well knew what the problem were. This allowed my wife and I to get our crucial affairs in order while she understood what we were trying to accomplish. My in-laws didn't and it resulted in a real mess later on for them.

I'm happy to try and answer any questions you might have if I can help.

Strength, Courage, & Peace

Good morning Scott. the most difficult part of my journey is that my husband does not converse on anything of a "real life" matter. What I mean with that is that he is a great story teller of what he sees on TV or reads on the computer (mostly news) but when I speak about our five children (three are mine and two are his as this is a second marriage) then he tends to shut it down. He does not enjoy family gatherings and as an introvert these activities drain him. I often visit the kids by myself. It is a blessing that he never minds when I visit on my own.

I thank you for your kind words and have looked at some of your articles about caregivers. It sounds like you had and still have a difficult journey.

When you say "you acted on that knowledge", did your wife oppose any decisions you made? Since my husband insists on doing the budget. I have protected our accounts by only giving him half of what the budget needs. The other half, he provides. When he changes it, I ask for a print-out of it and find several errors. I correct them and life goes on. He has done this four times over the last few months. He does not connect this to MCI or any other problem. My husband is 7 years older than me and English. He is also a traditionalist which will changes very difficult for both of us. He usually does better when he hears things from others or professionals.

I think my next move might be to go see his PCP and have a discussion face to face.

Thanks for your suggestions and wishing you well,

Others noticed changes in my husband before I did. He retired from his dental practice in 2016. He was 69 at that time. He did okay stayed active with exercise, traveling and social. About a year later a friend of ours, a Opthamologist, called me after we had met them for dinner and asked if my husband was ok? “ He was losing his balance on our walk and seemed to have a hard time with the restaurant bill.” We followed up with a MRI, which showed normal aging. Then
COVID isolation hit and that did him no good. As we reentered life He seemed to be “slipping” losing short term memory and I noticed conversations were a bit off.
Then last year he seemed to get very anxious with driving and was forgetting more.
This year after a trip to Florida where a friend whose late husband had MCI really noticed his changes. Driving on the 95 caused more anxiety.
We came home and he had another MRI this time showing some vascular ischemia.
In March we saw a geriatrician and there he had the MOCA scoring 26 out of 30 and after several hours of conversation the doc diagnosed MCI and suggested a driving test.
He passed with limitations. From there I found two neuropsychologists and we are on the journey.
At first we were holding back from telling anyone but close friends and our kids but now we share it just like any other illness. My husband feels better being open about it and people react in different ways but for the most part are quite supportive and I encourage friends to call and we make an effort to stay social.
I am in the process of taking over our financial management and looking for an investment advisor. My husband was in charge of all that.
I make all plans and have calendars and a white board on the frig for our daily schedule.
I am in charge of all supplements etc.
I can’t leave him overnight.
Having the diagnosis has made us take a hard look at our present and future and realize we only have so much time. It also made us be very proactive with his DIET- diet, interaction, exercise and time management.
I have gone from denial to anger to adjustment and now more acceptance. I’m laughing more than arguing.
I hope that helps somewhat. This is hard

Thanks for your helpful words. It is so good to know that there are many (way too many) people in the same boat as me. It is also good to be able to let others know. It must be terribly frustrating for my husband as he sees that more and more I take over things.
We are in the process of moving to a one-level home from a raised bungalow. All the contacts (real-estate, builder, lawyer, bank, etc.) is all up to me. He must be aware of some of this and I suppose him not objecting me doing this, is a partial acceptance of the changes OR he may be totally oblivious of all that needs to be done.
Wishing you well with your journey,

My spouse exhibited symptoms of distraction, disorganization, forgetting appointments, and so on for many years. She always attributed it to stress at work. She was diagnosed with depression, anxiety, and narcolepsy, all of which she began taking drugs for many years ago. Her symptoms didn’t clear up with retirement, however, and she also began getting lost when driving, leaving the house and garage unlocked (we live in a higher-crime urban area), and constantly misplacing important items like her keys and phone. Some days were more chaotic than others, so she still rationalized her behavior as situational and stress-induced. I began fearing that her long-term dependence on psychiatric drugs had affected her brain. After many hints and urging from me, she finally talked to her primary care doctor about it. The doctor referred her for neurological testing. She didn’t follow up, but after another annual checkup and a repeat referral, she did. The very thorough testing (I wasn’t there but read the lengthy report) concluded that she has “mild cognitive impairment.” The reassuring news was that there was no evidence of Alzheimer’s. She zeroed in on the word “mild” and ignored all the recommendations in the report for lifestyle adjustments, finding support, etc. Meanwhile, I was increasingly worried about her and feeling burdened by needing to be more vigilant and do more around the house. (Adding to our joint stress was our daily involvement in caring for her very elderly mother and her mentally ill brother.) Although we had discussed the report’s recommendation of the Mayo Clinic HABIT program, she forgot about it and didn’t follow up. After reminding her repeatedly, I finally took the initiative to look into it and get us enrolled. We had to wait a year for a vacant spot in the in-person program, but it was so worth it. HABIT was just what she needed to break through her denial and realize that her MCI was not just a little temporary inconvenience that will magically disappear someday when she’s no longer stressed. Now we talk about it, even joke about it, and manage together with realistic workarounds. Importantly, my resentment is fading because I gained so much understanding of MCI through HABIT and the going monthly support group online for HABIT alums. Knowledge is power, and the sad thing about denial is that it cuts us off from learning.

Thanks for your thoughtful comments Sue. It sounds like your plate is plenty full.
I live in Canada and I do believe our Alzheimer Association offers some support for caregivers.

I agree that there is nothing mild about MCI - in England they call it baby Alzheimer's (according to my cousin - a family physician). That is much more accurate but I am sure also more scary for the person who carries that diagnosis.

Wishing you much strength and patience,

I lived with my wife at home for a little over two years during which time (mostly at the beginning of this period), she proclaimed that she couldn't do these things anymore: drive, cook, pay bills, enter income and payments in a checkbook, and her hygiene became worse, where she wore the same clothes every day, didn't shower, brushed her teeth very quickly, and slept a lot of the day. She didn't talk much when awake, and often I just talked to myself with her sitting nearby. She was very anxious when I had a volunteer meeting away from home, and this led to me staying at home all the time. I eventually decided to place her into a memory care facility at the beginning of this July, and that decision wasn't difficult, but I felt a lot of guilt about it. She never received a diagnosis of MCI or of AD. Her psychiatrist was a little baffled, because she didn't want to talk about her condition or do much to treat it, but I think she has a combination of MCI and depression. She remembers our conversations and activities in which I'm involved, but doesn't like to (or can't) talk about what she's doing, activities in her facility, hasn't really engaged with anyone besides her roommate, etc. I often nod off when I visit, because there's little to talk about, but she enjoys my presence, and doesn't mind this. It's really a shame, because she was a vibrant, energetic person who took pride in her appearance, had a lot of friends, enjoyed cooking, reading, exercise, and travel. I put her on a waitlist for a nicer facility, because I think they might attempt to work with her more, the food would be better, and she'd be more closely matched with a roommate who was at about the same level of decline, but she doesn't seem to care -- when I told her I did this, she just said, "uh-huh," which is becoming a standard response to a lot of things I say. I'm in a men's support group and their mantra is that you have to take care of yourself first, and I'm finding that to be true. Best wishes and know that you are not alone.

Good morning Fleetwood,
My heart goes out to you. I believe the one that is suffering in your note is you. In my nursing career of over 40 years, I have seen so much of this disease and you lose a small part of the person over a long period of time. It sounds like your wife is at a stage where she has little periods of clarity and probably lives in the moment when she grasps what is going on. Our problem is we remember the times when our loved ones don't process things around us and it stays with us but knowing that our loved one has moved past that moment of anger or frustration is somewhat comforting in a weird way.
I wish you well and I agree with the "mantra of your men's group" that looking after yourself becomes a priority and there is nothing selfish about that. In fact you do this so you are able to visit with your wife and be in a good frame of mind.
Continue to take care of yourself,

When your wife’s name comes up on the wait list at the other facility, take your time to look carefully at the present and possible new situation.
Compatibility with a roommate is so important- their general mood, protectiveness about “their side” and “their way of doing things within the room”, the sound level their TV is placed at and frequency of it being turned on- there are lots of people for whom it’s on all day (we called it “audible wallpaper”) and loud. Other residents in the same hallway also have a big impact.
Hoping that staff in the other place will provide “more” is also not a given. It all depends on who is working on that particular shift, how many call-offs have occurred, what unexpected something has happened down the hall and requires extra staff time. Promises made by the other facility’s administrators have to be taken with a grain of salt. Every place has problems with staff turnover and shift coverage. This is a profession of primarily young women and kids get sick, the babysitter cancels, the car won’t start, etc.
Food quality is important, but take a close look at what your wife actually eats and how much. My husband also sleeps a lot and eats very little, old “favorites” hold no interest. He likes ice cream, so he gets a lot of that, with his PCP’s approval.
Finally, before planning a move, when you visit- look closely at the interactions between your wife and staff members. Does she make eye contact, maybe smile, when the Med nurse comes or the laundry lady comes in or an aide passes by and greets her? Does there seem to be a caring approach by the staff even if no response on her part? Is there anything special going on that she likes? My husband likes the musical things the Recreation Dept puts on but participates in nothing else. The facility allows one of the nurses to bring her very well-behaved small dog during her shift- he loves watching it play (as do many others who come out if their rooms to watch and laugh). It’s also important to consider that her room layout, the facility layout, the smells, the routine, the people are all now familiar, and a total change may be difficult to accommodate.
I guess what I’m trying to suggest is to look carefully at the whole picture in a “holistic” way ( a big buzz word, isn’t it?😊)

@centre Excellent post!!! I worked in a nursing home and we worked so hard to know names and recognize family when they came in. One suggestion that i would add is for the spouse to visit at different times of the day. This way they can observe activities and how the staff interacts with the residents. Thank you for the information!