1. < Caregivers: Dementia

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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maryvc | @maryvc | Mar 9 11:59am
In reply to @boppi "It may not really be denial. He may simply not remember he forgets. My husband did..." + (show)
@boppi

It may not really be denial. He may simply not remember he forgets. My husband did not realize he was having problems until our neurologist sent him to speech therapy and she put him through exercises he simply could not do. He then became willing to work at activities to help exercise his mind as much as possible to keep him with us as long as we can. He has now forgotten that he has dementia and I gently remind him occasionally when his antics go badly but it is a thin line to walk between helping and setting him up for depression. Besides the grief of his diagnosis, my hardest challenge has been maintaining patience of him, myself and our children who ignore him. God Bless you on this road!

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My husband also had a speech therapist and that was great. She worked on Brain exercises and continued to assess. She is done now and we are going on vacation for a few weeks, but I may continue to pay out of pocket for the therapy.
Loved what you said at the end about patience. It is hard and the denial is an issue because in MCI it’s sometimes hard to think of the word dementia as they surprise with lucidity and logic.
As far as the children, ours are adult children and grandchildren and they all include him and actually ask me to stay quiet and let him talk even if I see he is off. Great reminder to let him work with his own words and not talk for him.
Thank you for writing.

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1 reply
maryvc | @maryvc | Mar 9 12:02pm
In reply to @scupper "I am trying so hard not to cry this morning because each of you has shared..." + (show)
@scupper

I am trying so hard not to cry this morning because each of you has shared an experience familiar to me. It really does help just putting this into words..the feelings of loneliness, frustration, anger...all of it. On a good day, when I am rested and haven't overbooked my to do list, I can be more patient, show more humor...but on a not so good day...wow! This week I was ready to just leave...but of course wouldn't leave my son to manage this situation alone. Thank you so much for responding because I have felt like no one really understands the day to day challenges...until now.

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I so understand. Please just share here. Also leave at least a little even if it’s your own sacred space in your home. Hugs and hugs

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lag630 | @lag630 | Mar 9 1:27pm
In reply to @scupper "Perhaps we are in about the same place...recent diagnosis, personality changes, sometimes irritable with sometimes angry..." + (show)
@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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You are describing exactly what is happening at our home. He was diagnosed with MCI about a year ago. The angry outbursts in response to a simple comment, such as, “I’m going to bed, should I turn off the TV or are you staying up?” WOW, did I get an earfull! I was quite hurt by his comments and I just emotionally shut down the next day. I figured that I have to try to keep my tone light and say it with a smile to avoid these situations but it’s really hard. It shouldn’t have to be this way but here we all are, living it. We will be celebrating 44 years together and never in a million years did I see this coming. Thank you for opening the discussion on this topic. I don’t feel so alone trying to deal with this.

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civvy | @civvy | Mar 9 1:49pm

This is all so familiar and so much of what I experience. An angry outburst for a simple question
Never in a million years would I have imagined this . It is as though I am married to someone other than my spouse
Who is this guy? I will ask myself
Thank god I can share here

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boppi | @boppi | Mar 9 3:25pm
In reply to @maryvc "My husband also had a speech therapist and that was great. She worked on Brain exercises..." + (show)
@maryvc

My husband also had a speech therapist and that was great. She worked on Brain exercises and continued to assess. She is done now and we are going on vacation for a few weeks, but I may continue to pay out of pocket for the therapy.
Loved what you said at the end about patience. It is hard and the denial is an issue because in MCI it’s sometimes hard to think of the word dementia as they surprise with lucidity and logic.
As far as the children, ours are adult children and grandchildren and they all include him and actually ask me to stay quiet and let him talk even if I see he is off. Great reminder to let him work with his own words and not talk for him.
Thank you for writing.

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My children are grown and grandchildren old enough to know better behavior but they are “ghosting” my husband and it hurts both of us. I have spoken to them about this specifically and only some of them got it. Not sure what else to get them to be involve with him while there is time. Would love any insight!

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3 replies
Mentor
Becky, Volunteer Mentor | @becsbuddy | Mar 9 4:03pm
In reply to @eileendw "Thank you for sharing this. I thought it was just me having those reactions to my..." + (show)
@eileendw

Thank you for sharing this. I thought it was just me having those reactions to my husband’s MCI. Just knowing others are in the same place is extremely helpful.

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@eileendw Welcome to Mayo Clinic Connect! I’m so glad you found this group of very caring individuals who all share the same problem. It’s a comforting place isn’t it?
May I ask how you found Connect?

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1 reply
civvy | @civvy | Mar 9 5:10pm
In reply to @boppi "My children are grown and grandchildren old enough to know better behavior but they are “ghosting”..." + (show)
@boppi

My children are grown and grandchildren old enough to know better behavior but they are “ghosting” my husband and it hurts both of us. I have spoken to them about this specifically and only some of them got it. Not sure what else to get them to be involve with him while there is time. Would love any insight!

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Ghosting is a form of passive aggressive behavior.
My experience is that this is a very difficult emotional ploy to deal with when on the receiving end. The kids and grandkids are probably freaked out
And unable to handle their emotions I don’t know what else you can do other than to let they know you miss them and so does their dad.

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civvy | @civvy | Mar 9 5:13pm

Somewhere on social media I do not remember exactly where

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eileendw | @eileendw | Mar 9 5:18pm
In reply to @becsbuddy "@eileendw Welcome to Mayo Clinic Connect! I’m so glad you found this group of very caring..." + (show)
@becsbuddy

@eileendw Welcome to Mayo Clinic Connect! I’m so glad you found this group of very caring individuals who all share the same problem. It’s a comforting place isn’t it?
May I ask how you found Connect?

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I was looking for support groups in the Rochester area and came upon Connect. I figured it would help me learn how others are dealing with the struggles and surprises of caregiving. And that info would be helpful intellectually and emotionally. It can be difficult to understand the difference between caregiving and caretaking. Thank you for this.

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Mentor
Scott, Volunteer Mentor | @IndianaScott | Mar 9 6:20pm
In reply to @boppi "My children are grown and grandchildren old enough to know better behavior but they are “ghosting”..." + (show)
@boppi

My children are grown and grandchildren old enough to know better behavior but they are “ghosting” my husband and it hurts both of us. I have spoken to them about this specifically and only some of them got it. Not sure what else to get them to be involve with him while there is time. Would love any insight!

Jump to this post

Hello, @boppi My name is Scott and I was my wife's caregiver during her 14+ year war with brain cancer.

I learned a ton of things as a caregiver -- one of which was as much as my wife and I might have wished it to be otherwise, we could never direct how people would react to her illness and serious mental deficiencies. Other than our two children, everyone in my family ghosted on us and everyone in her family did the same -- other than to frequently let me know what they thought I was doing wrong. We had a very close-knit group of friends of over 40 years, all of whom also ghosted on us. This certainly hurt but I also came to realize that I couldn't afford the emotional energy it took to figure out why this was true of so many people, try and change them, or wish it were different. I looked at it that this was their deficiency and was baggage they alone would have to carry in their lives.

Not much help, I know, but at least you aren't alone in this.

Strength, Courage, & Peace

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