Introductions: Are you caring for someone with dementia?

Posted by Scott, Volunteer Mentor @IndianaScott, Aug 30, 2016

My mother-in-law (MIL) had what was finally determined to be frontal temporal dementia. She had the disease from her 60s until she passed away at 86. My wife was especially involved in her mom's caregiving due to some serious denial in other family members and a GP who refused to diagnose, even when significant deficits were obvious (mistaking the UPS deliveryman for her husband and not knowing the difference between roads and sidewalks). The most unfortunate result of this, to me, was the lost time when my MIL and her family could have been having meaningful and important discussions about significant matters of importance to her and them.

In my wife's years of fighting her brain cancer, she, too, exhibited many of the aspects of mental degradation and physical losses one would affiliate with a dementia patient.

As an aside, for several years I worked for the national Alzheimer's Association raising money for their research programs nationwide.

I wish everyone struggling with this disease and their caregivers and families strength and peace.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

@daisy2011

Hi There
As this disease progresses I n getting very lonely. My husband doesn't talk very much
Thanks for your support

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Hi again, @daisy2011 Yes, I agree, this disease can be very isolating to caregivers. It is what actually brought me to Mayo Connect in the first place. I found it a great way to be at home and yet reach out into the entire world and break that isolation. Or at least break it a bit! It is very hard when our loved one isn't communicating much anymore for sure. I know it was very hard in my case just as you describe!

Don't forget many of us are here and happy to visit, answer questions, and simply chat! it can be a great escape while still being right there for your loved one!

Strength, courage, and peace!

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@daisy2011

Hi There
As this disease progresses I n getting very lonely. My husband doesn't talk very much
Thanks for your support

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Hi @daisy2011 - I'm Debbra. My husband was diagnosed with Mild Cognitive Impairment, which seems to be progressing toward dementia. I totally relate to your loneliness. For me, the erosion in emotional connection is the hardest part. My heart is going out to you. Stay here on Connect. it's a great antidote to lonely evenings! Is there anything you do to be less lonely? Visit with friends? Call family? I'd love to hear what helps for you. For me it's calling two friends: one to keep my husband company and one to keep ME company - separately!

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@debbraw

Hi @daisy2011 - I'm Debbra. My husband was diagnosed with Mild Cognitive Impairment, which seems to be progressing toward dementia. I totally relate to your loneliness. For me, the erosion in emotional connection is the hardest part. My heart is going out to you. Stay here on Connect. it's a great antidote to lonely evenings! Is there anything you do to be less lonely? Visit with friends? Call family? I'd love to hear what helps for you. For me it's calling two friends: one to keep my husband company and one to keep ME company - separately!

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Hi Deborah
Thanks ir your lovely words. It's not easy that's for sure.
Take care

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@IndianaScott

Hi again, @daisy2011 Yes, I agree, this disease can be very isolating to caregivers. It is what actually brought me to Mayo Connect in the first place. I found it a great way to be at home and yet reach out into the entire world and break that isolation. Or at least break it a bit! It is very hard when our loved one isn't communicating much anymore for sure. I know it was very hard in my case just as you describe!

Don't forget many of us are here and happy to visit, answer questions, and simply chat! it can be a great escape while still being right there for your loved one!

Strength, courage, and peace!

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Thanks
Have a great day!!

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@IndianaScott

Thanks for the kind words, @daisy2011 I hope all is going well for you in your journey!

Strength, courage, and peace!

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Hello
Same to you!! Patience
Take care

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@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I'm tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

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My mother had vascular dementia and, according to her primary care physician, it was basically the same as Alzheimer's. As her mind failed communicating with her became more difficult. I learned not to argue with her or try to "teach" her anything because those days were gone. Today I give talks for Alzheimer's caregivers about communicating with loved ones who have this vicious disease.

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@harriethodgson1

My mother had vascular dementia and, according to her primary care physician, it was basically the same as Alzheimer's. As her mind failed communicating with her became more difficult. I learned not to argue with her or try to "teach" her anything because those days were gone. Today I give talks for Alzheimer's caregivers about communicating with loved ones who have this vicious disease.

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@harriethodgson1
Are any of your talks available online?

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@mbabkk

Sorry I can not follow the thread but just wanted to ssy that I witnessed improvement with the use of medicated patches - maybe you are doing this already. It is a tough journey but sometimes there is a glimmer of light. All the best I am only an sssistsnt caregiver and the patient is 90 years old and in stage 7 - the impact in her grown children is devastating

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@mbabkk
Could you tell a little more about these "medicated patches"? Are they specifically for dementia symptoms?

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@hopeful33250

@harriethodgson1
Are any of your talks available online?

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No, I give them to community groups. For example, I'm speaking at the Rochester, MN Public Health Department to Alzheimer's caregivers in a week. However, you've given me an idea.

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@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I'm tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

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My book, Alzheimer's: Finding the Words, a Communication Guide for Those Who Care may be available as an eBook from the publisher, John Wiley & Sons.

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