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Support Group for Those of Us Living With Mild Dementia

Posted by SusanEllen66 Susan McMichael @SusanEllen66, Sep 18, 2023

I know there is a Dementia Caregiver Support Group.

I would like to have a group for people like me. I am entering the Mild Dementia phase from Mild Cognitive Impairment.
It’s frightening to think about my future.

Could a group for Dementia Patients be started?

Interested in more discussions like this? Go to the Aging Well Support Group.

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susanejw | @susanejw | May 4 8:51am
In reply to @pb50 "@sisyphus i have the same opinion. I have undeniable degradation of cognitive reliability, but I also..." + (show)
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@sisyphus i have the same
opinion. I have undeniable degradation of cognitive reliability, but I also have quite inadvertently robbed myself of a social circle and believe that is impactful in this context.

I thought I was being smart selling my house ahead of my condition requiring it and moving 1.5 hours away to a smaller cottage near my oldest son and his wife.

The problem is there are no neighbors I might reasonably invite over for cocktails or coffee. So I am quite isolated. My circle has always developed organically and that isnt likely here.

The point is not just or even mostly my social circumstance. It is that I fear the isolation will accelerate my impairment.

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@pb50 Have you been diagnosed with a certain kind of dementia that you will probably get? If not, there’s a chance you won’t get any worse. OR even with a diagnosis, it could take years to get worse. I imagine moving was a huge ordeal, but if you’re not happy? Maybe move to a place closer to friends but where you don’t have as much responsibility for upkeep.

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susanejw | @susanejw | May 4 9:01am
In reply to @m961922zxymary "@sisyphus I read the same article and wondered how it actually applies to an individual who..." + (show)
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@sisyphus I read the same article and wondered how it actually applies to an individual who has been and still is an introvert. I have a few friends, and right now belong to two face-to-face groups which meet regularly, and several online groups that I participate in but my MCI is starting to make it harder to participate in groups. Also what happens when you cannot drive to places where there are people?

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@m961922zxymary I’m an introvert, too. I socialize almost exclusively with my husband, other than casual chats with doctors, librarians, & store clerks. I like this online connection, And I touch base with siblings & my kids now & then, via texting & email. My doc says all that counts as socializing. I imagine if I was single, though, I might seek friends more.

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happyquilter | @happyquilter | May 4 12:05pm

I would like to see a support group for mild dementia also. I recently had a really bad experience after being prescribed Zoloft by a therapist. Total memory loss for 2 days after starting Zoloft. Very scary.

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Profile picture for SusanEllen66 Susan McMichael
SusanEllen66 Susan McMichael | @SusanEllen66 | May 4 11:07pm
In reply to @colleenyoung "@jayanthk, thanks to @SusanEllen66 efforts in starting this discussion and forming a supportive group of people..." + (show)
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@jayanthk, thanks to @SusanEllen66 efforts in starting this discussion and forming a supportive group of people living with cognitive impairment, we will be opening a new support group on Mayo Clinic Connect soon (likely June).

To everyone, here is a list of Support Groups by condition on Mayo Clinic Connect https://connect.mayoclinic.org/groups/

Following the naming convention and to help people find the new group in an alphabetical list, what name would you call the group?
A. Cognitive Impairment & Living with Early Dementia
B. Dementia: Living with Cognitive Impairment
C. Early Dementia & Mild Cognitive Impairment (MCI)

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@colleenyoung neither of them
The definition of the difference between MCI and Dementia based on Mayo is “people with MCI May be aware that their memory or mental ability has changed. ……..But these changes aren’t bad enough to impact daily life or affect usual activities.
MCI raises the risk of developing dementia but for some people symptoms might never get worse or even get better.”

MCI is first before in the order of things not dementia.

MCI should be in the title first.

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Pattee Fletcher | @fletchette | May 5 10:37am
In reply to @sharonlynne "@fletchette what is the difference between the two tests that you had ...the CT SCAN and..." + (show)
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@fletchette what is the difference between the two tests that you had ...the CT SCAN and the PT scan?
So many different tests... and wondering...why was I given an MRI? And, I read that the MRI would not necessarily be conclusive! Not sure where this is going.
My Dr. didn't contact me yet, so tomorrow I am going into the office to see what my diagnosis is. Very anxious!!!!

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@sharonlynne sorry I am late to reply. How did your appointment go with your doctor?
I just saw my neurologist today and my diagnosis is still vascular dementia boy she’s not ruled out Alzheimer’s as well. So I’m having some pTau tests because that is elevated and tied to Alzheimer’s.
So I go with the flow. It’s a lot easier to just live one day at a time.

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sharonlynne | @sharonlynne | May 5 1:40pm
In reply to @fletchette "@sharonlynne sorry I am late to reply. How did your appointment go with your doctor? I..." + (show)
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@sharonlynne sorry I am late to reply. How did your appointment go with your doctor?
I just saw my neurologist today and my diagnosis is still vascular dementia boy she’s not ruled out Alzheimer’s as well. So I’m having some pTau tests because that is elevated and tied to Alzheimer’s.
So I go with the flow. It’s a lot easier to just live one day at a time.

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Sorry to hear that.

Did they give you any scripts to take? I can't get in too se a neurologist
until Sept

I know a friend who takes menatine (sp). How old are you? I am 76.

Sharon

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pb50 | @pb50 | May 5 3:21pm
In reply to @susanejw "@pb50 Have you been diagnosed with a certain kind of dementia that you will probably get?..." + (show)
Profile picture for susanejw @susanejw

@pb50 Have you been diagnosed with a certain kind of dementia that you will probably get? If not, there’s a chance you won’t get any worse. OR even with a diagnosis, it could take years to get worse. I imagine moving was a huge ordeal, but if you’re not happy? Maybe move to a place closer to friends but where you don’t have as much responsibility for upkeep.

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@susanejw
Thanks. And sadly yes, i have a
profound family history as well as the blood markers of Alzheimer’s. And I have an MCI diagnosis on the bass of testing.

I really don't have a lot of upkeep Pressure. And i do have a very nice handyman. And info to my Son & DIL’s for dinner at least weekly. So i am not someone you should feel sorry for. I just miss gossiping with girlfriends and swapping books and salad Sundays (something we used to do).

In my former condo it was very easy to meet people. That is what I meant by organic. And this rural setting does not provide that ease of access to people.

I think I am going to try volunteering someplace like a library.

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susanejw | @susanejw | May 5 4:20pm
In reply to @pb50 "@susanejw Thanks. And sadly yes, i have a profound family history as well as the blood..." + (show)
Profile picture for pb50 @pb50

@susanejw
Thanks. And sadly yes, i have a
profound family history as well as the blood markers of Alzheimer’s. And I have an MCI diagnosis on the bass of testing.

I really don't have a lot of upkeep Pressure. And i do have a very nice handyman. And info to my Son & DIL’s for dinner at least weekly. So i am not someone you should feel sorry for. I just miss gossiping with girlfriends and swapping books and salad Sundays (something we used to do).

In my former condo it was very easy to meet people. That is what I meant by organic. And this rural setting does not provide that ease of access to people.

I think I am going to try volunteering someplace like a library.

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@pb50 Ah. Hopefully you can keep driving for a long time so you can get to the library, etc. If I wasn’t married, I’d have probably made a similar move. Good luck!

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GetWellSoon26 | @vijay26 | May 6 8:27am

Write an essay on Mild Dementia in 100 lines, if you can please.

I am trying to understand what a dementia is.Every dementia is not Alzheimer's disease. Is it?

My hubby who is 81 thinks I have dementia and I am at 75 yrs of age think that he has a case of Dementia?
I am willing to go for noninvasive tests, but my hubby refuses.

How would I get him to go see a Neurologist or a Neuron whatever Psych is out there to get him and test him by force? No.Force please.

It scares me to use force on anyone.for any reason.
Educate me.
VJ

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1 reply
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susanejw | @susanejw | May 6 8:51am
In reply to @vijay26 "Write an essay on Mild Dementia in 100 lines, if you can please. I am trying..." + (show)
Profile picture for GetWellSoon26 @vijay26

Write an essay on Mild Dementia in 100 lines, if you can please.

I am trying to understand what a dementia is.Every dementia is not Alzheimer's disease. Is it?

My hubby who is 81 thinks I have dementia and I am at 75 yrs of age think that he has a case of Dementia?
I am willing to go for noninvasive tests, but my hubby refuses.

How would I get him to go see a Neurologist or a Neuron whatever Psych is out there to get him and test him by force? No.Force please.

It scares me to use force on anyone.for any reason.
Educate me.
VJ

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@vijay26 Maybe ask your primary care doctor for a referral to get tested for yourself first. Then you can tell your husband how the test wasn’t bad, was fun, etc. You can ask the doctors all your questions. They might have a suggestion on how to get your husband in there, and you’ll have a known place to refer him to.
I actually told my husband, “I’ll go if you’ll go” because he was bugging me to get tested. That worked for us.

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