Husband diagnosed MCI: He is in denial and personality is changing

Posted by civvy @civvy, Mar 7 8:26pm

Spouse diagnosed with MCI and he is in denial that there is any problem. In spite of his forgetting appointments and getting lost
He has had major changes in his personality and is often irritable and hostile.

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I don't remember if I read about this here or elsewhere, but ... I just bought the book "Contented Dementia" --"brings amazing benefits for patients and carers." I mention it even though I haven't read it yet because I figure that even if I had read it, and then either recommended it or not, that wouldn't mean someone else could or won't benefit from the information in it. (It is from 2008.)

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@scupper

Perhaps we are in about the same place...recent diagnosis, personality changes, sometimes irritable with sometimes angry outbursts. I know its all about his brain and what's going on. Unfortunately, my responses are not productive...I feel angry and resentful...but also sad. disappointed and frustrated. I feel like I am trying hard to provide a healthy environment for him...good food, social interactions, support with managing daily life appts. He doesn't notice. Certainly, there is no appreciation. So, yes, I understand how this isn't about me! I know it is hard on him...even writing this out, I hate how it sounds. There is no real answer, I guess. Still, I can't be the only one who has similar feelings.

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No, you aren't the only one with similar feelings. I find myself being very weepy in response to watching and listening to my husband struggle with newly diagnosed Parkinson's Disease and his lack of insight. And no, there is no appreciation - for us it has meant leaving a much-loved mountain cabin and moving the whole family down to a more oxygenated elevation (from 9300' in Rocky Mtns); healthy diet; regular visits to a gym and the library; managing his meds and medical appointments; setting up and getting him to at least one social event a day so that he interacts with (or at least sees) other people. Both of us have given up many things we loved doing and this is far from what we had planned to do in retirement. He refuses to discuss PD let alone read anything about the disease; and sarcastically tells me and health providers that the only person who thinks he has problems is me. (But so far, every sign and symptom I have identified has been substantiated by lab work and testing by professionals) Best wishes to you in your continuing care for your partner. Onward and upward!

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@1995victoria

My cousin had to go into a memory care residence. She is younger than me, but she was doing all kinds of strange things, not paying bills, on every charity list, would take a month's worth of rx in a week, eat a week's groceries in a day (and get sick), she would call me 12 times in 1/2 hour to ask "what day is it?" She would unplug her phone, so I couldn't reach her, then she would say her phone wasn't working. I couldn't help her as I have my own medical issues and have no one to help me. Neurologist diagnosed her with dementia after many many tests. I've been a caregiver for mom, dad, uncle brother, I could use my own caregiver some days, but still plodding along. Wishing all caregivers peace and prayers.

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I can’t believe what you have been through. All I have is my one aunt to ocassionally look after. I had quit a time with my mom before she passed. I feel so useless after hearing your story. Surely you will enter sainthood some day! Wish you lived in NOLA as I would offer some help!

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@cmb1

I can’t believe what you have been through. All I have is my one aunt to ocassionally look after. I had quit a time with my mom before she passed. I feel so useless after hearing your story. Surely you will enter sainthood some day! Wish you lived in NOLA as I would offer some help!

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That's very sweet, I'm care giving myself now. With my cousin I learned I had to let others take care of her, my care-giving reserves were/are tapped out. Stay well.....v

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@ncb

No, you aren't the only one with similar feelings. I find myself being very weepy in response to watching and listening to my husband struggle with newly diagnosed Parkinson's Disease and his lack of insight. And no, there is no appreciation - for us it has meant leaving a much-loved mountain cabin and moving the whole family down to a more oxygenated elevation (from 9300' in Rocky Mtns); healthy diet; regular visits to a gym and the library; managing his meds and medical appointments; setting up and getting him to at least one social event a day so that he interacts with (or at least sees) other people. Both of us have given up many things we loved doing and this is far from what we had planned to do in retirement. He refuses to discuss PD let alone read anything about the disease; and sarcastically tells me and health providers that the only person who thinks he has problems is me. (But so far, every sign and symptom I have identified has been substantiated by lab work and testing by professionals) Best wishes to you in your continuing care for your partner. Onward and upward!

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My guy has not been diagnosed: outside of home, he is pretty much as he was. But, given any level of not-perfect, he gets frustrated, yells and always wants more than I have to give. No indication that I might be tired, etc. So, I keep trying to remember to take care of myself first: he is safe, just angry. I go into another room, pick up another activity and, while I can, leave the house for errands every few days or meet a friend for lunch. Valium used to help my BIL, but they will not prescribe it. Instead we have Seroquel, which puts him to sleep. I keep a good schedule for non-processed meals, but I do not look forward to a time when I have to manage his meds.

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@civvy

My husband is very high functioning in many ways. He still consults for in international organization . He has, in the words of his doctors “a large cognitive reserve “. He does not believe that there is anything the matter and there is zero chance he would be willing to spend time in any type of day care.
He does best when I get him to go out and about with m; it is a double edged sword because he can become easily nasty and irritated around me
My coping mechanism is to live in 20 minute intervals: when things get really awful sometimes 20
minutes later things have improved

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I like your approach with the 20 minute intervals. My wife has MCI and not as severe as full on Alzheimer’s or dementia. However, the emotional comport is similar. My thinking is now this; I need to manage my exposure time carefully. There are times when I need to just exit the situation for a time, and also plan for days away regularly or even a week away for a couple times a year.
I just cannot devote my entire life to my wife’s interest alone. I believe my calling is to serve others and love them too, and if all of my time is consumed with my wife alone, I’m unable to do that .

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I have not written lately because I have been busy and things didn't seem so bad but today I lost it. Negative negative negative and telling me I can't find time to stream our show together. All he can think about. I only wish all I had to think about was " When are we going to watch our show?"
Last night my daughter and granddaughter came for dinner. We had not been with our granddaughter to just enjoy time together. They came over and we had burgers on the deck and then we always like to watch Jeopardy together. My husband says he is not going to watch it and wants me to put on his show. It was really sad. As usual I tried to appease him and also explained this is our time with our daughter and granddaughter. It's not all about him. But it is all about him. I can't go a minute without thinking of him, yet I am still not doing enough. I am ready to explode. And actually, I did this morning. I exploded in the car and was sobbing. My tears are anger and sadness then terrible guilt for yelling and then I worry about him. I took him to the fitness center, which he loves and hopefully he is okay. But I am exhausted.
I could write so much more but want you and everyone else here to know you are not alone. We are losing the person we love and counted on to help us and to make our life better sometimes.
Yes-personality changes. He can't help it and I can't either. Hang in there and thank you for being there and sharing.

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@randywhite

I like your approach with the 20 minute intervals. My wife has MCI and not as severe as full on Alzheimer’s or dementia. However, the emotional comport is similar. My thinking is now this; I need to manage my exposure time carefully. There are times when I need to just exit the situation for a time, and also plan for days away regularly or even a week away for a couple times a year.
I just cannot devote my entire life to my wife’s interest alone. I believe my calling is to serve others and love them too, and if all of my time is consumed with my wife alone, I’m unable to do that .

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Your comments - “I need to manage my exposure time carefully. There are times when I need to just exit the situation for a time, and also plan for days away regularly or even a week away for a couple times a year.”
This actually makes sense to me in terms of protecting one’s sanity. Or is it selfish? Opinions?

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@rjchambliss5

Your comments - “I need to manage my exposure time carefully. There are times when I need to just exit the situation for a time, and also plan for days away regularly or even a week away for a couple times a year.”
This actually makes sense to me in terms of protecting one’s sanity. Or is it selfish? Opinions?

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Makes sense to me too but hard to get away without still thinking of them constantly. I did just get away for a girls trip. My husband's best friend stayed with him for 4 days. They did well. I have cameras so still kept an eye but was able to relax and have fun and laugh. But I came back exhausted. Everyone says get away by yourself and I would love to do that but need more help.
And we can't think of it as selfish in a negative way. We have to be selfish or there will be no self to care for our loved ones. Message to self.

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So glad you got away on your girls’ trip! 👍

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