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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Scott R L | @scottrl | Jun 11 1:58pm
In reply to @maryvc "Makes sense to me too but hard to get away without still thinking of them constantly...." + (show)
@maryvc

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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"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."

Exactly. A drowning man will kill you trying to save himself. Not intentionally of course, but extreme situations can have extreme outcomes.

In too many cases, caregivers pour themselves out and die first, leaving their loved one in the worst possible situation.

When I became disabled by a stroke, I knew that caring for me was exhausting my wife. I dedicated myself to recovering as much as possible as quickly as possible. After more than five years, I've still got a long way to go, but I've taken most of the load off of her. I also recognize her need for time alone. In fact, she's taking a few days next week to meet up with her sisters. I'll be fine on my own.

Of course, my situation isn't your situation, but that isn't selfishness, it's self-preservation.

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1 reply
judimahoney | @judimahoney | Jun 11 7:00pm
In reply to @maryvc "I have not written lately because I have been busy and things didn't seem so bad..." + (show)
@maryvc

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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Hi, my husband is also very self-focused, and that was so frustrating. I finally read on this blog somewhere that it has to do with their self-preservation and need to inwardly focus so they can cope with their situation. That did help a little but the frustration will not end.
Hang in there we shall!

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civvy | @civvy | Jun 11 8:22pm
In reply to @scottrl ""And we can't think of it as selfish in a negative way. We have to be..." + (show)
@scottrl

"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."

Exactly. A drowning man will kill you trying to save himself. Not intentionally of course, but extreme situations can have extreme outcomes.

In too many cases, caregivers pour themselves out and die first, leaving their loved one in the worst possible situation.

When I became disabled by a stroke, I knew that caring for me was exhausting my wife. I dedicated myself to recovering as much as possible as quickly as possible. After more than five years, I've still got a long way to go, but I've taken most of the load off of her. I also recognize her need for time alone. In fact, she's taking a few days next week to meet up with her sisters. I'll be fine on my own.

Of course, my situation isn't your situation, but that isn't selfishness, it's self-preservation.

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Beautifully articulated!

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jehjeh | @jehjeh | Jun 12 10:59am
In reply to @maryvc "I have not written lately because I have been busy and things didn't seem so bad..." + (show)
@maryvc

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.

Jump to this post

I understand about the emotional roller-coaster. One moment my husband loves me with all his heart, the next, our marriage is over, he knows I have a boyfriend, I'm spending all his money... last night, for the first time I laid in the dark and cried.

It's been at least 6 years, 24/7, and I'm looking for someone to come in twice a week so I can go for a walk, shop, see friends or just drive somewhere and sleep in my car, uninterrupted for a couple of hours.

Doctors can't help much because it's been difficult to get him there. (He also suffers from chronic pain)

Sorry for the long post, just needed to reach out this morning.

I appreciate all your wisdom here.

REPLY
2 replies
maryvc | @maryvc | Jun 12 12:05pm
In reply to @jehjeh "I understand about the emotional roller-coaster. One moment my husband loves me with all his heart,..." + (show)
@jehjeh

I understand about the emotional roller-coaster. One moment my husband loves me with all his heart, the next, our marriage is over, he knows I have a boyfriend, I'm spending all his money... last night, for the first time I laid in the dark and cried.

It's been at least 6 years, 24/7, and I'm looking for someone to come in twice a week so I can go for a walk, shop, see friends or just drive somewhere and sleep in my car, uninterrupted for a couple of hours.

Doctors can't help much because it's been difficult to get him there. (He also suffers from chronic pain)

Sorry for the long post, just needed to reach out this morning.

I appreciate all your wisdom here.

Jump to this post

I’m so glad you reached out. We are not alone but sometimes it feels that way. And then we want to be alone to rest, recoup. Funny about sleep in your car.
I am working on finding my own retreat air BnB by a lake where I can write and breathe, sip my wine and remember that life goes on.
ThankYOU for your reply.

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marye2 | @marye2 | Jun 12 2:14pm

I am going through the exact same things! I requested medication for him for times when he is frustrated and irritable. I think that, if he were more mobile, a walk or water exercise would seriously help center him. I do keep meals on a schedule and try to be home more which keeps him more calm. I have simplified the household, with less clutter and so it is more visually calming. A great FB site is the AARP Family Caregivers discussion group: you can also sign in as Anonymous to keep your privacy. I also follow Brittany Lamb, Caregiving Made Easy and there are some good you tubes.

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randywhite | @randywhite | Jun 13 8:35am

So regarding personality changes associated with MCI, I will tell my story here. The principal element of the three symptoms of MCI (memory, cognition, and emotion affect) that my wife is affected by is Emotional Management. The best way for me to see and cope with that is to identify three different personas that can be present alternating several times per day, at times. The first persona is GG, which is a fun positive and delightful person. The second persona (normal) is her real name which I won’t mention here due to privacy considerations. The third persona is Gertrud. That one is chronically Negative, angry, self absorbed and irrational. Gertrud can appear at an innocuous triggering. And can remain all day. (I have yet to find the ‘off switch’). So for now, adequate functionality exists to permit me to leave the scene, for hours or even a whole day.
Your thoughts?

REPLY
1 reply
jmg60 | @jmg60 | Jun 13 9:48am
In reply to @jehjeh "I understand about the emotional roller-coaster. One moment my husband loves me with all his heart,..." + (show)
@jehjeh

I understand about the emotional roller-coaster. One moment my husband loves me with all his heart, the next, our marriage is over, he knows I have a boyfriend, I'm spending all his money... last night, for the first time I laid in the dark and cried.

It's been at least 6 years, 24/7, and I'm looking for someone to come in twice a week so I can go for a walk, shop, see friends or just drive somewhere and sleep in my car, uninterrupted for a couple of hours.

Doctors can't help much because it's been difficult to get him there. (He also suffers from chronic pain)

Sorry for the long post, just needed to reach out this morning.

I appreciate all your wisdom here.

Jump to this post

I am sorry you are (both) experiencing this emotional and physical challenge. I cannot encourage you enough for find caregivers to provide you with that alone time to regenerate your mind and body. You can't keep it up, I was doing this 24/7 until about 6 weeks ago. It's life changing. And as my husbands needs increase, so will the caregiver hours. I don't know if it's that American pioneer rugged individualist pride, or what...we don't ask for help nearly often, or soon enough! You deserve a life, and if you don't get some help YOUR health will be at stake, there is plenty of evidence for that. So find the caregiver(s) and don't be shy - 4 to 5 hours a couple of days at least! Put on your oxygen mask before helping others! Best wishes.

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gail60 | @gail60 | Jun 14 8:24am
In reply to @randywhite "So regarding personality changes associated with MCI, I will tell my story here. The principal element..." + (show)
@randywhite

So regarding personality changes associated with MCI, I will tell my story here. The principal element of the three symptoms of MCI (memory, cognition, and emotion affect) that my wife is affected by is Emotional Management. The best way for me to see and cope with that is to identify three different personas that can be present alternating several times per day, at times. The first persona is GG, which is a fun positive and delightful person. The second persona (normal) is her real name which I won’t mention here due to privacy considerations. The third persona is Gertrud. That one is chronically Negative, angry, self absorbed and irrational. Gertrud can appear at an innocuous triggering. And can remain all day. (I have yet to find the ‘off switch’). So for now, adequate functionality exists to permit me to leave the scene, for hours or even a whole day.
Your thoughts?

Jump to this post

I only use 2. Him and the Alzmonster.

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gail60 | @gail60 | Jun 14 8:27am

Civvy, Is he young? A lot of times Early Onset Azheimer's has Frontotemporal Degeneration which has a specific set of emotonally based symptoms.

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