Caring for someone with dementia / Alzheimer's

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

Thanks for the great idea, @colleenyoung. I think a specific group and discussion is warranted given the challenges dementia can present to caregivers.

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.

@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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@hopeful33250

@harriethodgson1
Are any of your talks available online?

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Hi @hopeful33250 @daisy2011 and members of this incredible group,

@harriethodgson1 recently wrote a lovely article for the Experts by Experience series (Mayo Clinic social Media Network). I hope you enjoy reading her insights about caregiving as much as I did:

A Nothing Day: Self-Care for Caregivers – Experts by Experience https://socialmedia.mayoclinic.org/2018/07/06/a-nothing-day-self-care-for-caregivers-experts-by-experience/

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Thanks, @kanaazpereira for directing us to this wonderful article. The ideas are real gems! I love the concept of a "Nothing Day" and the ways in which Harriet uses her Nothing Day are precious!

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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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@debbraw
I have heard from many friends who say the loneliness was such a difficult part of this disease. One friend said that she and her husband (he has dementia) now eat in front of the TV since they cannot have their usual dinner conversations. I suppose it is all a matter of continued adjustment to the changes but yet you have the memories of what used-to-be.

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@hopeful33250

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

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Hi @hopeful33250 and @mbabkk I am not sure if this is what was being referred to as /medicated patches', but I know in my wife's case. late in her disease journey, the doctors prescribed some of her medications both in patch form and creams, rather than pills or liquids. In one case they (the pharmacy0 also were able to compound four medications together into a suppository. As my wife's mental condition deteriorated, I was impressed with the various methods of application her doctors came up with!

Strength, courage, and peace!

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@kanaazpereira

Hi @hopeful33250 @daisy2011 and members of this incredible group,

@harriethodgson1 recently wrote a lovely article for the Experts by Experience series (Mayo Clinic social Media Network). I hope you enjoy reading her insights about caregiving as much as I did:

A Nothing Day: Self-Care for Caregivers – Experts by Experience https://socialmedia.mayoclinic.org/2018/07/06/a-nothing-day-self-care-for-caregivers-experts-by-experience/

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Thank you @kanaazpereira – I LOVE the idea of Nothing Day! I'm going to share it with the other group I'm in: Living with Mild Cognitive Impairment. I really appreciate you highlighting it.

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