Caregiver for spouse with MCI (Mild cognitive impairment)

Posted by birdhouseclosed @birdhouseclosed, May 23, 2018

Need help accepting this and dealing with what is to come.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

@cooldad56

You don't mention his current state. That makes a huge difference. I was diagnosed with mci with diffuse lewy bodies 3 years ago when I did tests because I thought something wasn't right. My neurologist said he doesn't usually sees some this early.
My wife freaked out, assuming I would be a burden within just a couple of years, should stop driving and attributed anything and everything to my decline even when there's another explanation, like lack of sleep, lifelong ADHD, or long-term depression to name a few. I spent the next 15 months having my driving tested (it's fine), learning about dementia, trying to justify my existence. Finally, after the 3rd doctor visit together and hearing again that mci is different from dementia, and my timetable is unknown, she backed off. I still have to point out not everything implies dementia. I still easily handle the 10 areas of independent daily living.
My memory isn't quite as good, especially misplacing my car keys; my sleep a little more off, but improving; my ADHD symptoms are more obvious; my eating is less regular; I get less done in a typical day. I still manage medical care, which includes making sure my 7 primary professionals are on the same page and we are all going in the same direction.
I suggest: live in the moment and set times to think about the bigger picture; create some good times, get a good professional resource and use them (doctor, geriatritian, counselor, social worker, speech and language therapist- they're trained to identify coping mechanisms - I've used all of these for different pieces); treat him with respect (includes letting him do for himself what he can); use his phone as a memory aid with calendar for appointments, including destination to use with map app, contacts, photos, etc.; don't assume a new issue can't changed, while not everything can; help him stay physically and socially active.
Most importantly, learned from having a daughter with Down Syndrome, take care of yourself first. I doubt you are still 30, and you can't help much if you're very frazzled. Treat yourself with respect and take care of yourself as well.
I'm open to private messages.

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You have a wonderful attitude that is worth emulating. Thank you.

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@pam4kids

My anxiety has been pretty bad and I’ve been more tearful lately. I think the hardest thing is my husband’s smothering and controlling now. He such a sweetheart otherwise but I’m feeling overwhelmed with his “helping” me. He won’t let me do anything myself.

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Bingo! What you say here describes my situation to a tee. (tea?) My husband is also smothering and "helpful" and it's crazy-making. I know he's trying so hard to do well and be well--he denies having Alzheimer's, though it's been diagnosed and is very obvious--and I feel so bad for him, but no matter how patient a person is, eventually patience wears thin. I think "overwhelmed" is the default position for folks in our situation. Hang in there. What else can we do?

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@cooldad56

You don't mention his current state. That makes a huge difference. I was diagnosed with mci with diffuse lewy bodies 3 years ago when I did tests because I thought something wasn't right. My neurologist said he doesn't usually sees some this early.
My wife freaked out, assuming I would be a burden within just a couple of years, should stop driving and attributed anything and everything to my decline even when there's another explanation, like lack of sleep, lifelong ADHD, or long-term depression to name a few. I spent the next 15 months having my driving tested (it's fine), learning about dementia, trying to justify my existence. Finally, after the 3rd doctor visit together and hearing again that mci is different from dementia, and my timetable is unknown, she backed off. I still have to point out not everything implies dementia. I still easily handle the 10 areas of independent daily living.
My memory isn't quite as good, especially misplacing my car keys; my sleep a little more off, but improving; my ADHD symptoms are more obvious; my eating is less regular; I get less done in a typical day. I still manage medical care, which includes making sure my 7 primary professionals are on the same page and we are all going in the same direction.
I suggest: live in the moment and set times to think about the bigger picture; create some good times, get a good professional resource and use them (doctor, geriatritian, counselor, social worker, speech and language therapist- they're trained to identify coping mechanisms - I've used all of these for different pieces); treat him with respect (includes letting him do for himself what he can); use his phone as a memory aid with calendar for appointments, including destination to use with map app, contacts, photos, etc.; don't assume a new issue can't changed, while not everything can; help him stay physically and socially active.
Most importantly, learned from having a daughter with Down Syndrome, take care of yourself first. I doubt you are still 30, and you can't help much if you're very frazzled. Treat yourself with respect and take care of yourself as well.
I'm open to private messages.

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@cooldad56, helpful post to hear life from your side of the fence. You might also be interested in these group discussions and connecting with others living with dementia:

- Support Group for Those of Us Living With Mild Dementia https://connect.mayoclinic.org/discussion/can-we-have-a-support-group-for-those-of-us-with-mild-dementia/
- Loss of My Life, My Future Because of Alzheimer’s. https://connect.mayoclinic.org/discussion/loss-of-my-life-my-future-because-of-alzheimers/
- Communicating Challenges With Lewy Body and Dementia https://connect.mayoclinic.org/discussion/communicating-challenges-with-lewy/

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I have not seen this discussion. My husband, 84, has been diagnosed with dementia. I am 80, and not in great health. We have no support group where we live. I worry what to do if I had to be hospitalized. I confronted my husband about moving to an independent living facility close to our daughter. He has been fighting me on this and says I am just using this as an excuse. I hate to do the move with him so against it. I am so torn as what is the best decision. Anyone else have a similar problem?

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Hello. I first started with a diary writing my feelings and my interactions with my spouse. I also read my Bible or a good book. I made sure my house was safe. Rugs, bars in the shower and clear walkways. I also made sure all legal stuff was done before he was unable to be part of it. He is mad because he cannot drive. Thank God that happened. He is not the same person in many ways. He is always in a good mood if he is hungry. All responsibilities will fall in your lap. Prepare to be having tons of different emotions. It is ok to be lost and afraid. Do your best. Be prepared to feel alone when he is in your presence. I have been dealing with this issue since 2013. Once in awhile they actually acknowledge your presence and actually thank you or tell you they "Love you". It is the long goodbye for sure. Sorry if I was so candid. I do love my spouse of 52+ yrs. 🫂

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@sillyblone

Hello. I first started with a diary writing my feelings and my interactions with my spouse. I also read my Bible or a good book. I made sure my house was safe. Rugs, bars in the shower and clear walkways. I also made sure all legal stuff was done before he was unable to be part of it. He is mad because he cannot drive. Thank God that happened. He is not the same person in many ways. He is always in a good mood if he is hungry. All responsibilities will fall in your lap. Prepare to be having tons of different emotions. It is ok to be lost and afraid. Do your best. Be prepared to feel alone when he is in your presence. I have been dealing with this issue since 2013. Once in awhile they actually acknowledge your presence and actually thank you or tell you they "Love you". It is the long goodbye for sure. Sorry if I was so candid. I do love my spouse of 52+ yrs. 🫂

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I needed to read your message today. Yesterday the responsibilities were overwhelming me!
Thank you 🙏🏻

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@pamdg

I needed to read your message today. Yesterday the responsibilities were overwhelming me!
Thank you 🙏🏻

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You are very welcome.🙏

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@sillyblone

Hello. I first started with a diary writing my feelings and my interactions with my spouse. I also read my Bible or a good book. I made sure my house was safe. Rugs, bars in the shower and clear walkways. I also made sure all legal stuff was done before he was unable to be part of it. He is mad because he cannot drive. Thank God that happened. He is not the same person in many ways. He is always in a good mood if he is hungry. All responsibilities will fall in your lap. Prepare to be having tons of different emotions. It is ok to be lost and afraid. Do your best. Be prepared to feel alone when he is in your presence. I have been dealing with this issue since 2013. Once in awhile they actually acknowledge your presence and actually thank you or tell you they "Love you". It is the long goodbye for sure. Sorry if I was so candid. I do love my spouse of 52+ yrs. 🫂

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I could’ve written this post!
I feel like I live on a deserted island in my own home. All of the effort and energy I expend goes unnoticed and unappreciated. I feel like I live on a hamster wheel.
Ditto regarding the driving issue. He believes that he will get his license back and voices this daily. He’s so angry about how “they” took his driving privileges away. Yes, thank God for that!
I try to get “me” time whenever possible, am exploring meditation to try and save my sanity, and daily wonder how long I will be able to continue to provide care without losing my mind completely.
I really appreciate all of you on Mayo Connect. Like you, never in a million years did I ever think this was going to be our life post retirement.

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@lag630

I could’ve written this post!
I feel like I live on a deserted island in my own home. All of the effort and energy I expend goes unnoticed and unappreciated. I feel like I live on a hamster wheel.
Ditto regarding the driving issue. He believes that he will get his license back and voices this daily. He’s so angry about how “they” took his driving privileges away. Yes, thank God for that!
I try to get “me” time whenever possible, am exploring meditation to try and save my sanity, and daily wonder how long I will be able to continue to provide care without losing my mind completely.
I really appreciate all of you on Mayo Connect. Like you, never in a million years did I ever think this was going to be our life post retirement.

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Ditto also, I could have written your post exactly and share your fears. Hugs.
Judi

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@lag630

I could’ve written this post!
I feel like I live on a deserted island in my own home. All of the effort and energy I expend goes unnoticed and unappreciated. I feel like I live on a hamster wheel.
Ditto regarding the driving issue. He believes that he will get his license back and voices this daily. He’s so angry about how “they” took his driving privileges away. Yes, thank God for that!
I try to get “me” time whenever possible, am exploring meditation to try and save my sanity, and daily wonder how long I will be able to continue to provide care without losing my mind completely.
I really appreciate all of you on Mayo Connect. Like you, never in a million years did I ever think this was going to be our life post retirement.

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I am thankful for your post. My husband won't even surrender his driver's license. Which means he still is on the policy. I feel like going in his wallet and getting it. But ...no telling what he might do or say. He says the the most ugly things. Sometimes I respond and sometimes I leave from his presence. He was awful yesterday. Does your spouse refuse to bathe and acts like he will perish if water touches his skin? He is sometimes an evil version of someone who looks like my spouse but..is not. If I hear one more time he has Parkinsons so he can't help it I will scream. He will get a call on his phone is so nice to them. So go figure. I cook, clean, bathe him, shave and trim his beard, and give him a pedicure when needed. The only person that visits is my best friend. She does not use platitudes. She speaks truthfully to him. He looks at her like I wish I could say what I want. Lol...He never says anything ugly to anyone else but me
I gave him Parkinsons and a number of other conditions he has. He will not do PT when it is ordered. Everything is my fault..PERIOD. I have decided he will not take my spirit away. I know one thing I will never marry again. Been there done it. Most likely I will be gone before him. I am healthy ..but that doesn't guarantee anything. I love my husband and would not wish this for anyone. But the name calling, screaming and outrageous comments is daily. He is a bully and does not appreciate anything. (Verbally). My sanity is intact and I know what to expect ..but that being said this not how I thought I would be spending my golden year's. That is my rant and every bit is true.

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