Support Group for Those of Us Living With Mild Dementia

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.

Profile picture for craigbyrom @craigbyrom

@ashley43725
Those are complex dreams !
My dreams, even from last night are vivid as the day is long.
Almost an extension of real life and about the craziest scenarios.
Last year my dreams were more night terrors of being in danger or being attacked by strange images. I was having some hallucinations around that period.
I am grateful that they are more like weird alternate reality now.

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@craigbyrom yeah, my dreams can turn out that way too.
Crazy scenarios that don’t make sense and never end.
Sometimes I have to get up and walk around a bit for my mind to settle, otherwise the same dream will commence as soon as I close my eyes.
While they are very vivid, they soon fade during the day.
No rest for the wicked 😄. Regards, Ashley

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Hello all
What a week, it just blew by.
I dreamt several dreams last night and woke from each one as if I was acting them out, not sure what to think.
Felt like I didn’t sleep well, but today was a day of clarity and ability to stay on task for the most part.
I enjoy these days!
At the same time it’s days like this that make me think I’m all good and subconsciously I’m waiting for it to sneak up on me and go away.
But for now and for today, I am grateful 😊

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Profile picture for craigbyrom @craigbyrom

Hello all
What a week, it just blew by.
I dreamt several dreams last night and woke from each one as if I was acting them out, not sure what to think.
Felt like I didn’t sleep well, but today was a day of clarity and ability to stay on task for the most part.
I enjoy these days!
At the same time it’s days like this that make me think I’m all good and subconsciously I’m waiting for it to sneak up on me and go away.
But for now and for today, I am grateful 😊

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@craigbyrom acting out dreams is part of the REM sleep disorder.
I do this sometimes too. It’s an indicator of MCI. Regards, Ashley

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Profile picture for Ashley @ashley43725

@craigbyrom acting out dreams is part of the REM sleep disorder.
I do this sometimes too. It’s an indicator of MCI. Regards, Ashley

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@ashley43725
Rem sleep disorder can also be the result of trauma - assaults, sex assaults, traumatic family deaths, etc.

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Profile picture for craigbyrom @craigbyrom

Those of us Living with mild dementia.!
Hi my name is Craig and I’m living with MCI/ Mild Dementia.
Well i come here to read others experience, strength and hope and remind myself i am not alone in this, i learned this in the rooms of NA and AA for many years.
I am getting to the point where i need to focus on shorter periods of time instead of tomorrow or next week, i focus on the next :30 minutes or even 5 minutes. Not all the time but today it was.
I do a lot of note taking; checklists in particular as i may forget what i was doing while I’m doing it.
So i look at my list and recognize what i was doing and pick back up.
This was very apparent today and for that i am Grateful.
I am grateful that i am aware, maybe not in the moment but at some point i am aware of my deviation.
I share these things; my experience, strength and hope because today was a rough day but i made it through.
I am trying to stay positive and fight off depression because where there is comfort in depression, there is no progress and depression has a terrible way of pulling me in making me think it is a safe place to be, but its not.
I suit up and show up each day, no one day is like the others. Never knowing what level of clarity (cognitive ability) i will have at any given moment.
My mind fades sometimes and find myself in the middle of a room where i must have just been staring at God knows what for how long in a daze.
Found myself standing at my bathroom sink eating a slice of pizza; its like i come out of a little dream or something.
Can you relate to any of this ?
Enough about me.
Thank you all for your experiences
Craig

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@craigbyrom hello Craig, in some ways I feel like I know you. The AA phrases you used brought back conversations that I had with my former husband. He uses the “suit up and show up” when he has to go to work.
A gratitude list is something we can consider doing if and when someone helps us. A caregiver has a thankless job so a list we can share with them would be a blessing for both.

For me, MCI in combination with other neurological disorders has really disrupted my life. I keep myself busy by painting, working jigsaw puzzles, and searching for bargains…

I’m glad you found us.

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Profile picture for Ashley @ashley43725

Hello!
I was diagnosed with Lewy body disease 2 years ago and while I don’t have dementia yet, I was also diagnosed with MCI. I am following this discussion with much interest. I also feel as if I am on a “runaway train “. I still work, but I can tell a difference in my cognitive abilities, as they seem to be slowly declining. It is nice to be able to find a group such as this so one doesn’t feel so isolated. This is my first post. Regards, Ashley

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@ashley43725 we are glad you found us. I hope we can all learn from each other.

I have a question. You were diagnosed with Lewy Body Dementia 2 years ago. That is a dementia.

What did your doctor say about your diagnosis? Did they give you the information in writing? I hope so, that way you will be able to recall what they said.

I’m confused about what you were told.

Please let us know.
Again, we are happy you found us!

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Hello!
I was diagnosed with Lewy body disease, with MCI.
The dementia hasn’t developed yet.
Everything is in my medical charts and is well documented.
I am in the early stages of this disease, and manifestations are slowly coming to the forefront, dreaming, acting out dreams, etc. thanks for asking, Regards, Ashley

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Not sure ,where I am. Still testing being done, but memory is getting worse.

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My wonderful partner of 42 years had to quit working 2 years ago due to slowed mentation and what we believe is PD. We will meet with a neurological professional in 2 weeks. He's taken a 3.5 hour test and did well except for the pattern repetition with flashing lights. MRI of the brain looked good. He is dealing with panic attacks, intense anger, anxiety, and forgetfulness. Some minimal tremors upon waking. I've seen a personality change and know he's putting on a brave face, but we're both scared, frankly. Important meeting with neurologist upcoming.

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Update, the MCI diagnosis I got several years ago has not changed. I’m still doing well most of the time.

The Ataxia diagnosis was not correct. I was instead diagnosed with Functional Neurological Disorder FND. That has given me all sorts of physical problems. It’s not a brain disease.

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