Denial of MCI - how does spouse/caregiver cope?

Posted by ihanrath @ihanrath, Aug 13, 2023

My husband came home from driving a school-bus and told me he forgot how to put gas in the bus. This was 11 years ago. Since then he has lost his car in the parking lot even though he was dropped off right beside it, he has lost his way in the camp-ground. He over-dosed our dog while I was nursing out of the province, even though he was a paramedic for 33 years. He is now 72 and his moods are very flat.
He insists on doing the budget but mixes up the numbers.
He does pay the bills on time. He watches a lot of TV, mostly detective stories and documentaries.
I have talked to his doctor and a MoCA test was done which scored lower than normal at 23/30, two and a half years ago. He had a Ct to rule out a tumor BUT he has not received a diagnosis of MCI.
I spoke to some family members who have noticed changes but won't talk to him about it. One member noticed that he repeats whole conversations.
I am frustrated to continually have to walk on eggshells.
Any suggestions?

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@centre

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?😊)

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My guess is that the other place probably won't contact me at all, because they're the big guys in town and can accept or reject applicants for their own reasons. I had a more positive interaction than usual with the old place's community relations director, and a fairly decent lunch there yesterday, so I won't rush into anything. Most of the staff are very friendly and treat my wife respectfully. Maybe part of her illness is to be withdrawn and not very engaged with other residents.

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@suesearing

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.

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We attended HABIT in January and it is a superb program. A template for optimal aging as well as managing the decline pace of MCI.

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@ihanrath

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,

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My wife was diagnosed with MCI about 22 months ago. We have been to the HABIT program at Mayo clinic Scottsdale in January. We were fortunate to be advanced up the waiting line and able to attend at that time. It is a superb program lasting 10 days and provides a generous amount of coaching on how to slow the advancement into Alzheimer’s. Also useful coaching on forestalling aging for non MCI seniors too.
Having said, all of that, my wife is mostly still in denial and, I believe that is partly a coping mechanism. After wrestling with this for a long time, I have come to this conclusion; the best that I can do, is to help her to have the best life she can for as long as she can; however I am able to do that.
Hope this provides Hope for you.

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My husband is so frustrating to speak to, sometimes. He does not remember some of what I tell him. An example is, even though he was present when the doctor told him he would be in the hospital until at least Thursday he insisted that it never was said. Or, we will have a circular conversation about reasons he needs to do something or make an appointment. He is easily frustrated and angry. I have found (and I am in really early stages of this) that just repeating the information for him is less frustrating. If he is angry/frustrated, I leave the room and do not try to engage in settling him down. Usually it is something about the computer not doing what he wants it to. I am trying to be more scheduled with meals and events. He does know that he is slowing down mentally, but I adjust to whatever it is rather than pointing it out.

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Hi Mary,

It is a very frustrating time for both of you. It sounds like he is aware of his brain malfunctioning and you also see the results of this. It is hard to grasp that he REALLY doesn't know he is repeating things or comprehending or remembering. I think you nailed it when you say not to point out when he does this.
The thing that is so frustrating for us is that we remember the odd and frustrating times when this happens but your husband has already forgotten a few moments later and life goes on.
I highly recommend that you touch base with the Alzheimer Society to give you some coping skills when these frustrating moments occur. They have a whole tool-box of ways to handle this that decreases the frustration for you. Scheduled meals and activities will help you but he doesn't know the difference. Maybe think of introducing a visitor on a weekly basis (church or volunteer from elsewhere) that can spend some time with him to give you a break. Then maybe as this progresses, you will be able to leave him for some time to have a break.
Wishing you well,

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@marye2

My husband is so frustrating to speak to, sometimes. He does not remember some of what I tell him. An example is, even though he was present when the doctor told him he would be in the hospital until at least Thursday he insisted that it never was said. Or, we will have a circular conversation about reasons he needs to do something or make an appointment. He is easily frustrated and angry. I have found (and I am in really early stages of this) that just repeating the information for him is less frustrating. If he is angry/frustrated, I leave the room and do not try to engage in settling him down. Usually it is something about the computer not doing what he wants it to. I am trying to be more scheduled with meals and events. He does know that he is slowing down mentally, but I adjust to whatever it is rather than pointing it out.

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@marye2 your situation really does sound frustrating. I like that @ihanrath suggested the Alzheimer’s Assoc so here is the link:
https://www.alz.org/
Let us know what you learn that will benefit you and your husband!

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Thank you. Early days, I believe. It is more of a dementia due to lack of oxygen getting to his brain. Our doctor prescribed an anti-anxiety medication for periods of frustration.

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My husband is the same in some respects. I am not sure what MCI stands for though?. He is fine most of the time, although he is starting to forget. And asks the same question over and over. I find the best thing to do is ask him to do something and have him do it straight away before he forgets, but saying that I can go in the garage for something get distracted and forget what I went for, I think that is pretty common. He has his daily chores, makes the bed, dishes, garbage, sets the table outside for lunch, plays solitaire on computer etc. He has carotid neck surgery and an aortic valve replaced in the past so no doubt that effected his oxygen. I just need to have more patience, it’s not easy. He also has hearing aids he doesn’t wear another issue so he doesn’t hear what I say unless I raise my voice which honestly is very annoying I find my voice gets hoarse. Any other advice would be appreciated. Have a good day.

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@centre

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?😊)

Jump to this post

My wife is very stoic about her situation, and has, to a degree, assumed the role of caregiver for her older roommate, who expresses herself about being abused by staff, being fed things which upset her stomach, not getting enough assistance, wanting to go home, and so on. I think this occupies most of my wife's time, but she is fond of her roommate. I don't think she engages with other residents very much or participates in many of the facility's activities. Her own level of cognitive impairment is mild, and I don't see a change since she entered the facility two months ago. She lives for my visits and is reluctant for me to leave. I tend to visit every other day and stay for about two hours. Her personal hygiene is not very good. I know the residents have nurse-supervised showers twice weekly, but that really isn't frequent enough, and I don't think she brushes her teeth adequately. She also wears the same clothes every day, although I think they are laundered. This is not new behavior, as she was lax with her dental and physical hygiene at home, and clothing changes. She has always had a habit of picking at her fingernails, and over the last several years has picked them down to where there's very little nail left. Our conversations mostly consist of me telling her what I've been doing, and she remembers to ask me questions about those activities. At home, she was so anxious about me going anywhere that I stopped going out, and this was probably the driving factor for me to place her in a memory care facility. She would sleep a lot during the day, and could no longer drive or operate any electronics or cooking appliances. I don't want to be her caregiver, but it's heartbreaking for me to witness her living in conditions that are several steps down from those at home. On the other hand, she doesn't complain about them. Her facility is a "good" environment, relatively speaking, but I feel guilty about her being in it, although my freedom would be sharply limited if she were at home, even with a home healthcare worker, which we had. So it's a conundrum.

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@fleetwoodiv

My wife is very stoic about her situation, and has, to a degree, assumed the role of caregiver for her older roommate, who expresses herself about being abused by staff, being fed things which upset her stomach, not getting enough assistance, wanting to go home, and so on. I think this occupies most of my wife's time, but she is fond of her roommate. I don't think she engages with other residents very much or participates in many of the facility's activities. Her own level of cognitive impairment is mild, and I don't see a change since she entered the facility two months ago. She lives for my visits and is reluctant for me to leave. I tend to visit every other day and stay for about two hours. Her personal hygiene is not very good. I know the residents have nurse-supervised showers twice weekly, but that really isn't frequent enough, and I don't think she brushes her teeth adequately. She also wears the same clothes every day, although I think they are laundered. This is not new behavior, as she was lax with her dental and physical hygiene at home, and clothing changes. She has always had a habit of picking at her fingernails, and over the last several years has picked them down to where there's very little nail left. Our conversations mostly consist of me telling her what I've been doing, and she remembers to ask me questions about those activities. At home, she was so anxious about me going anywhere that I stopped going out, and this was probably the driving factor for me to place her in a memory care facility. She would sleep a lot during the day, and could no longer drive or operate any electronics or cooking appliances. I don't want to be her caregiver, but it's heartbreaking for me to witness her living in conditions that are several steps down from those at home. On the other hand, she doesn't complain about them. Her facility is a "good" environment, relatively speaking, but I feel guilty about her being in it, although my freedom would be sharply limited if she were at home, even with a home healthcare worker, which we had. So it's a conundrum.

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Hello Fleetwood,

I think it is one of the most difficult decisions to place your loved one in a care facility. It sounds like you did the right thing. As a nurse (now retired this year) I have seen many situations where a caregiver gives more than they can only to find themselves in their own health situation, usually caused by burn-out. What you did is called self-care and it takes courage to realize this.

Regarding the difference in what you did at home and what her care is now is also difficult. Have you had a meeting with the care facilities where you can express this and hear their side of the situation? Be open-minded to their explanations and explore different opportunities. You may want to take another family member or trusted friend with you to get more perspective.

If their answers include lack of available staff, could you financially hire a PSW (personal support worker) or equivalent for her care. As for her oral hygiene and change of clothes, I would ask staff to supervise and assist with this.

Remember that if it doesn't bother your wife that you may have to lower your expectations for her care but there must be an identified expectations by the care facilities. I truly believe that communication may resolve this for you. Also consider seeing a social worker or counselor to help you navigate through this. In Canada, this is provided by the Alzheimer Society but not sure if this is the same where you live.

Wishing you well,

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