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.

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

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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how about trying the drug that slows down progression of almzheimers? And going to mind therapy? How are you so certain that you have it? Why can’t you get a home health care assistant and stay i your home? Best wishes

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I'm happy to have found this group. No testing yet -- feeling nervous about what I might find out. (The "ignorance is bliss" mindset, which I know is not the best.) My main issue is difficulty in finding words. My husband tries to let me find the next word, rather than fill in the word for me. It's uncomfortable when I can't find a word when talking to others. (Doesn't happen often, but not a comfortable experience.) And my excellent spelling skills are not what they used to me. We've just purchased an apartment in a Senior Cooperative, which I think is a very good move for us! We're busy with last steps in getting our house ready to go on the market. It's all rather chaotic right now, but we're excited about our busyness for a positive next fork in the road. I'm looking forward to being able to connect with people here! Reading comments has been very helpful! (I hope by commenting here that I will be considered a part of this group.)

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@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…

Jump to this post

SusanEllen-
You've mentioned that your neurologist is not nearby, and is not very proactive.
Do you have any professional help nearby?
This might make a big difference if you can arrange it.

REPLY
@edsutton

SusanEllen-
You've mentioned that your neurologist is not nearby, and is not very proactive.
Do you have any professional help nearby?
This might make a big difference if you can arrange it.

Jump to this post

@edsutton my Neurologist is not proactive, however he is nearby.
I have an appoint with a new one. It’s in January. Getting in to see a new specialist is a 5-6 month wait. I’ve been waiting…

Tomorrow I see my Pulmonologist. My blood oxygen levels are swinging widely. According to my report, just today my Hourly range was 86-95%. Hourly! Nuts…

Oh well, my sister is coming to see me for 10 days on the 29th. I’m excited about that!

REPLY
@elisabeth007

how about trying the drug that slows down progression of almzheimers? And going to mind therapy? How are you so certain that you have it? Why can’t you get a home health care assistant and stay i your home? Best wishes

Jump to this post

@elisabeth007 so many questions…
I was approved for Leqembi, however one of the many side effects is possible brain bleed. I had a brain bleed a while ago so I’m going to wait.

I do go to a therapist.

How do I know I have it? Well, I’ve had 2 MRIs, an MRA, EEG, a PET-scan, and an Neuro-Psychological 4 hour test.

I’m looking into all possibilities for my care. Home Health care sounds nice but the cost of 24 hour care is very expensive.
I just found out that when I go to Assisted Living I can have my place decorated with a few of my own things. That makes me feel better.

Thank you for caring!

REPLY
@rosewg

I'm happy to have found this group. No testing yet -- feeling nervous about what I might find out. (The "ignorance is bliss" mindset, which I know is not the best.) My main issue is difficulty in finding words. My husband tries to let me find the next word, rather than fill in the word for me. It's uncomfortable when I can't find a word when talking to others. (Doesn't happen often, but not a comfortable experience.) And my excellent spelling skills are not what they used to me. We've just purchased an apartment in a Senior Cooperative, which I think is a very good move for us! We're busy with last steps in getting our house ready to go on the market. It's all rather chaotic right now, but we're excited about our busyness for a positive next fork in the road. I'm looking forward to being able to connect with people here! Reading comments has been very helpful! (I hope by commenting here that I will be considered a part of this group.)

Jump to this post

@rosewg you were part of the group before now! Welcome.

I noticed changes at first similar to what you have described. That was 4 years ago. I did the tests and was diagnosed with Mild Cognitive Impairment.
Now 4 years later, I knew I was getting worse, I could just feel it. My thoughts, and actions were changing.

I’m thinking that you joined this group because you already have definite feelings about belonging here.
I would get tested if I were you, simply to put yourself at ease.

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A recent documentary on PBS is The M Factor: shredding the myths about menopause. Relates to this topic beautifully.

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Two years later. Increased frustration, partly due to UTIs and other ailments. Low on empathy, detailed conversations. We changed anti-depressant to Zoloft. He takes Seroquel to sleep. Still playing the organ at church. New psychiatrist says he needs therapy so trying to get in for that. Next neuropsych test is in December. We had an awful time in the airport for a May vacation, so we will avoid that in the future. Even with the KTN (Known Traveler Number) the security was a challenge. With kidney disease, we have an online diary, which he still can do, to manage dietary needs. We bought an electric wheelchair, but he does not always think about me on foot! Continuing to shrink our belongings around the house and simplify what must be done. Phone and paper calendars.

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