Living with Early Dementia or Mild Cognitive Impairment - Meet Others

Posted by Lisa Lucier, Moderator @lisalucier, Jun 22 9:45pm

As promised, Mayo Clinic Connect now has a group dedicated to living with Early Dementia and Mild Cognitive Impairment (MCI) support group. Follow the group to get notifications when new posts are made.

This is a welcoming, safe place where you can meet people living with early dementia or MCI, or who are wondering about these conditions or undergoing testing. Let's learn from each other and share stories about living well with these conditions, interacting with others who do not have these diagnoses, and offering tips.

Looking forward to welcoming you and introducing you to other members. Feel free to browse the topics in the Early Dementia and Mild Cognitive Impairment (MCI) group or start a new one.

Let's chat. Why not start by introducing yourself?

Interested in more discussions like this? Go to the Early Dementia & Mild Cognitive Impairment (MCI) Support Group.

It’s interesting that we have different types of MCI, but many of the same problems & solutions. Like I, too, try to keep everything in a specific place, like Ashley. It’s not really a choice for me. I started being annoyed by people moving or leaving things around. It really helps me function, that sameness.
And I’m kind of doing that MIND diet, but now I’ve got so much wrong with me, my heart, osteoporosis, MCI…I figure I’m on the way out, quality-of-life-wise, so I might as well have treats now & then. 😉

Frontotemporal, though, is different in that it changes your personality. I felt like I didn’t know who I was. The meds really help with that, but still, I can’t get into my old interests, except reading & walking in the woods. I’m very apathetic, while I used to get very riled up about a lot of things.
Whereas, my mother-in-law was just the same, personality-wise, until near the end of her Alzheimer’s.

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Profile picture for susanejw @susanejw

@fletchette Who are the people in your photo?

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@susanejw - I agree. What a neat photo @fletchette posted. I, too, would love to know who the people are in the photo.

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Hi, I'm Carol from northern Virginia. Glad to find solace in this group as a caregiver. My husband of 27 yrs developed dementia, Alzheimer's type diagnosed at age 62 . He had worked as an atty., chose to retire from the gov't 2 yrs ago after knowing he inherited his mother's gene for Alzheimer's, exactly at the same age. Given he's in the 'younger dementia' age group, it has been awful to accept the reality.. not knowing what path to take with supports and to enjoy retirement years. I haven't retired though I cut my hours as I find work as a healthier distraction for now. Aside from playing his violin/piano, it has been daunting for him to seek other ways to fill his time , ie handywork, gardening or gym. It's a quiet, a different kind of grief as the wife/caregiver as I felt somewhat robbed of time in my early 60s. Thanks for this safe space.

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Profile picture for Pattee Fletcher @fletchette

@ashley43725
acceptance! I’m having a hard time getting to acceptance. What works for you?

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@fletchette I think I’ve always been kind of philosophical about experiencing the stages of life. This is the next one. It’s new territory, something to explore. And, you know, we all have to die of SOMEthing! Maybe I’m lucky in that way, having Frontotemporal. It makes me apathetic, so I don’t feel like I’m missing out on socializing.
That said, I do hope I don’t get a stroke, which you and I both must fear, me because of my coronary microvascular problem.

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Profile picture for Lisa Lucier, Moderator @lisalucier

@susanejw - I agree. What a neat photo @fletchette posted. I, too, would love to know who the people are in the photo.

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@lisalucier from L to R
Megan, Kate, and myself
My daughters

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Profile picture for Pattee Fletcher @fletchette

No sound sensitivity. But I’m finding myself choking on beverages and food. It’s almost frightening.
I’m trying to follow the MIND diet. It’s been a challenge. Lots of leafy greens so I’m getting really good at salads☺️ lot of fresh fish. NO dairy, sugar, salt which for me,are the hardest. But there’s research to suggest that this diet can slow down vascular dementia.
I’d like to hear what others are doing or thinking about doing to slow down the dementia.

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@fletchette I’m not sure if it helps, but my husband and I do some of the NY Times games first thing after our caffeine. I only do the free ones: Wordle, Connections, Spelling Bee, & Strands. I sometimes do crosswords, but it’s hard to find an appropriate level. They seem to too easy or too hard. And at night we watch Jeopardy. So: games, reading, and a daily walk of 1-2 miles. I’m bad about socializing, though. I just talk to my husband, & text or email family.

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Profile picture for Ashley @ashley43725

I am a housekeeper in a hospital.
I have less than a year left before I retire, so it is finally on the horizon.
I look forward to retirement, it’s been a long time coming.
Regards, Ashley

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@ashley43725 Start planning on what you will do with your time. You need a reason for tomorrow. I got into animal rescue and then gardening.

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Profile picture for Pattee Fletcher @fletchette

I’m delighted to accept this invitation. It’s so difficult to find any group for the actual patients. I have been actively looking for one since my diagnosis of vascular dementia. I feel so alone and I hope this group offers some support and discussion about what we are going through.

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@fletchette There is a very excellent organization with groups who meets online. (Zoom) Everyone who participates has some form of dementia. If you need help with Zoom, let me know.

There are different groups that have different “flavors”.
One is music, another a woman’s group, a “drop in group”, and others. Everyone is very nice, patient with each other, a safe place to be for us. No judgement, just a chance to be with others.

The organization is Dementia Action Alliance.
http://www.daanow.org

They have a page on Facebook too.
Dementia Action Alliance USA

There’s no cost for the support groups.

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Profile picture for findingdory2022 @findingdory2022

Hi, I'm Carol from northern Virginia. Glad to find solace in this group as a caregiver. My husband of 27 yrs developed dementia, Alzheimer's type diagnosed at age 62 . He had worked as an atty., chose to retire from the gov't 2 yrs ago after knowing he inherited his mother's gene for Alzheimer's, exactly at the same age. Given he's in the 'younger dementia' age group, it has been awful to accept the reality.. not knowing what path to take with supports and to enjoy retirement years. I haven't retired though I cut my hours as I find work as a healthier distraction for now. Aside from playing his violin/piano, it has been daunting for him to seek other ways to fill his time , ie handywork, gardening or gym. It's a quiet, a different kind of grief as the wife/caregiver as I felt somewhat robbed of time in my early 60s. Thanks for this safe space.

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Hi @findingdory2022 - welcome, and thank you for sharing some of your story with your husband.

I would like to invite you to participate in a group especially for caregivers caregivers for someone living with cognitive impairment or dementia.

The members in this group are caring and supportive, and they share lots of helpful information.

You may follow the caregiver support group here:
- Caregivers: Dementia https://connect.mayoclinic.org/group/caregivers-dementia/

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Profile picture for susanejw @susanejw

@fletchette I’m not sure if it helps, but my husband and I do some of the NY Times games first thing after our caffeine. I only do the free ones: Wordle, Connections, Spelling Bee, & Strands. I sometimes do crosswords, but it’s hard to find an appropriate level. They seem to too easy or too hard. And at night we watch Jeopardy. So: games, reading, and a daily walk of 1-2 miles. I’m bad about socializing, though. I just talk to my husband, & text or email family.

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@susanejw thank you for the suggestions you offered. I’m always open to ideas. And everything you mentioned are all recommended strategies to try to moderate the dementia. And I’m all for that!

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