Support Group for Those of Us Living With Mild Dementia

Posted by SusanEllen66 @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.

@SusanEllen66

I’m fighting fear. I’m anticipating having to move into an assisted living facility in the near future.
I look around my home at all the beauty I have created and cry. I will have to get rid of everything…How can I give away things that mean so very much.

I know I must. Eventually this disease, Alzheimer’s will rob me of my memory so I guess it doesn’t matter.

Now, I need to find a place where the patients are well cared for. That is, based upon reviews, a hard thing to find. Prices are incredibly high!
$10,000 per month is not unusual for Memory Care.

One day at a time…

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@SusanEllen66 scary thought indeed! How can anyone afford the $10,000 a month!? 😱 I know I couldn’t! Don’t even know if there is such a facility in Ontario where I live, never mind the cost … who has this kind of money, especially a pensioner …!? 😯

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@SusanEllen66

New Topic, do you feel upset when others say, “you don’t LOOK like you have dementia, you don’t SOUND like you have dementia, I forget my keys too…

I get defensive, and offended when someone challenges my disease.

This morning I was on a ZOOM meeting with the people from DAA. (Dementia Action Alliance) DAAnow.org
They suggested a few ways I can handle those remarks that upset me.

“Do you hold your keys in your hand, and you don’t know what to do with them”.

“Do you walk into your own kitchen and not know what room you are in”.

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@SusanEllen66 I can relate to that! I have fibromyalgia and some related autoimmune illnesses and I get the same thing: “you don’t LOOK sick …!?” I often am made to feel like a sloth when I mention lack of energy (much less motivation most times!) to do simple household tasks!

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@emyliander

My checks are automatically deposited into my account and I use Bill Pay to pay for most of the bills but I still put in the amount to pay. I have a hard time trusting companies to have free will in what they take, but I’m not doing any better, I’m giving them more than the bill, so I can’t trust myself either.
I’ll check with the bank, thank you.
Another thing is the Scams these days, hard to distinguish sometimes.
Thank you for your response.

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This. has probably been mentioned before—have you had your B12 level checked and are you getting enough sleep.
Are there things at home or elsewhere that cause you a lot of anxiety, all these things can contribute to difficulties with memory.
My best wishes to all.

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@rashida

@SusanEllen66 in Canada MRIs, EEGs, neurologist/specialist referrals are used as a last resort for anything. For instance, if one has concern about dementia a doctor usually gives you that memory test and if you fail you are put on medication to delay dementia. I have seen two friends a good ten years younger than I being diagnosed this way, both went downhill and died within five years, so when I started forgetting I did see my doctor about fifteen years ago but I have resisted this diagnosis and treatment method. My mother had Alzheimer’s (she too probably was given that same test and put on the medication) and died at 86. I am just going to do my best to keep my brain active as long as I can by whatever means other than medication, for as long as I can. So far, at 78, I have managed to cope. Unless I get an MRI to prove I have dementia, I am going to live in denial, I guess. 🤷🏼‍♀️

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As far as I am aware, the only real insight an MRI will provide as it relates to Alzheimer's are fairly late term changes - like loss of cortical volume.

Cognitive testing by Neuropsychiatrists are how I prefer to trend progression over 12-18 month chunks of time.

Slowing that progression is the holy grail. I dont believe there are any meds that make a material difference. But I do believe that specific usage “exercise” can slow things down. Its about laying down new neuronal pathways. Function on a well used pathway may decline, but I try to develop new ones via new knowledge chains - in the hopes it will provide the equivalent of an alternate route for whatever I am asking my brain to do at that moment.

All that said to suggest that small concise bits of learning anything new should be helpful even if they dont seem useful. Can’t hurt is my view.

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@pb50

As far as I am aware, the only real insight an MRI will provide as it relates to Alzheimer's are fairly late term changes - like loss of cortical volume.

Cognitive testing by Neuropsychiatrists are how I prefer to trend progression over 12-18 month chunks of time.

Slowing that progression is the holy grail. I dont believe there are any meds that make a material difference. But I do believe that specific usage “exercise” can slow things down. Its about laying down new neuronal pathways. Function on a well used pathway may decline, but I try to develop new ones via new knowledge chains - in the hopes it will provide the equivalent of an alternate route for whatever I am asking my brain to do at that moment.

All that said to suggest that small concise bits of learning anything new should be helpful even if they dont seem useful. Can’t hurt is my view.

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pb50, I really like your approach!

Learning new things and solving problems is great fun...and it solves problems!

Last week my wife asked me to modify a bird feeder I'd made a few years ago. The project required my knowledge of bird behavior, understanding materials, deciding how to bolt on the new part, and finding the right bolts, special tool management, and understanding my wife's way of filling the bird feeder.
That was great fun! (And I felt very useful.)

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