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Caring for someone with dementia / Alzheimer's

Posted by @IndianaScott, Aug 30, 2016

Thanks for the great idea, @colleenyoung. I think a specific 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.

REPLY

@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

Liked by ladycat, remi54

Hello- I don’t get out much and am looking for an online community of caregivers who are at home full-time caring for a parent with Alzheimers. I’d love to swap suggestions and ideas. Is there anyone out there? Thanks.

@kmkm

Hello- I don’t get out much and am looking for an online community of caregivers who are at home full-time caring for a parent with Alzheimers. I’d love to swap suggestions and ideas. Is there anyone out there? Thanks.

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@kmkm Welcome! I am in the same position as you are — except I’m caring for my spouse. Looking forward to sharing experiences and ideas with you!

@kmkm

Hello- I don’t get out much and am looking for an online community of caregivers who are at home full-time caring for a parent with Alzheimers. I’d love to swap suggestions and ideas. Is there anyone out there? Thanks.

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Welcome @kmkm. I moved your message to this discussion thread that @IndianaScott started to help bring together people caring for a someone who has Alzheimer’s. @nanax2 just joined Connect today too. She is the primary caregiver for her mom who has Alzheimer’s. I’m hoping the two of you can connect here.

Kmkm – are you caring for your mom or your dad?

@kmkm

Hello- I don’t get out much and am looking for an online community of caregivers who are at home full-time caring for a parent with Alzheimers. I’d love to swap suggestions and ideas. Is there anyone out there? Thanks.

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Thank you, Colleen. I live with my husband, college-age daughter, and my mother. Based on her symptoms (which I’ve read on the Alz dot org website,) I’d say my mother is probably in the late “Middle Stage” of Alzheimers.

@kmkm

Hello- I don’t get out much and am looking for an online community of caregivers who are at home full-time caring for a parent with Alzheimers. I’d love to swap suggestions and ideas. Is there anyone out there? Thanks.

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Hello @kmkm! YES, we are out here! I was a secondary caregiver for my mother-in-law while she struggled with dementia and then my wife for 14 years while she battled brain cancer and suffered from many dementia-like effects.

While I am not a doctor, nor a trained medical professional of any kind, I am more than happy to share my experiences, successes and failures, frustrations, and happy times of caregiving.

Welcome! I send…

Peace, courage, and strength

@kmkm

Hello- I don’t get out much and am looking for an online community of caregivers who are at home full-time caring for a parent with Alzheimers. I’d love to swap suggestions and ideas. Is there anyone out there? Thanks.

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I think I “Replied” in the wrong place. Sorry. I posted below that I live with my husband, college-age daughter, and my mother. Based on her symptoms (which I’ve read on the Alz dot org website,) I’d say my mother is probably in the late “Middle Stage” of Alzheimers.

@kmkm

Hello- I don’t get out much and am looking for an online community of caregivers who are at home full-time caring for a parent with Alzheimers. I’d love to swap suggestions and ideas. Is there anyone out there? Thanks.

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Thank you, IndianaScott.

You replied to the right spot kmkm! I’m so pleased that you connected here with @tavi and Scott.

@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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Please join me in to this group. I am caring for my husband with early stages of dementia. He is constantly asking the same questions which can be nerve racking. He can still sit in a group and laugh and converse so many do not realize what is happening. He only drives in and around our area where he has lived since childhood. Never any distance. We play bridge and he amazes me how well he can play complicated hands. We exercise almost daily at a YMCA. He does do some yard work. He has started constantly itching his head, but I can see nothing. Wondering if a dematologist is needed to check.

@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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You are most welcome in this group @donnajane. It might give you piece of mind to see a doctor about his scalp to ensure there isn’t something there that you can’t see. But also be prepared that this may be another symptom of the disease.
It is wonderful that the two of you can still be so active both physically and socially.

When others are not able to realize what is happening, I hope this group can be your virtual shoulder to lean on, a place where you can talk frankly and openly. We look forward to getting to know you.

Liked by ladycat, Terry, remi54

Hey There,

I just joined, I care for my soon to be 94 year old Mother with dementia, I’d say late stage at this point. Since ideas and plans you put into action today may not work tomorrow, I think a site/group like this can be helpful to share ideas and methods of coping with issues. That is why I joined. I know I wish I had been more clever sooner, you can’t think of everything, so ideas will work for one person and not for another. For intendance, over a year ago my Mother got up during the night and opened the front door, the next day I installed a dead bolt with a key on each side. She was having trouble finding her bathroom at night, which was literally 10 steps from her bed, so I installed a string of those tube lights on the bathroom wall leading to the toilet. Now we are using doggie poop bags for Mom’s soiled briefs, it really controls to odder. Wish I had thought of that one months ago! Anyway I’m looking forward to getting more, better ideas for copping here.

@tsoy

Hey There,

I just joined, I care for my soon to be 94 year old Mother with dementia, I’d say late stage at this point. Since ideas and plans you put into action today may not work tomorrow, I think a site/group like this can be helpful to share ideas and methods of coping with issues. That is why I joined. I know I wish I had been more clever sooner, you can’t think of everything, so ideas will work for one person and not for another. For intendance, over a year ago my Mother got up during the night and opened the front door, the next day I installed a dead bolt with a key on each side. She was having trouble finding her bathroom at night, which was literally 10 steps from her bed, so I installed a string of those tube lights on the bathroom wall leading to the toilet. Now we are using doggie poop bags for Mom’s soiled briefs, it really controls to odder. Wish I had thought of that one months ago! Anyway I’m looking forward to getting more, better ideas for copping here.

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Hello @tsoy I am Scott and wish you strength and courage along your caregiving journey. I cared for my mother-in-law, who had dementia, as one of her secondary caregivers and my wife, as her primary caregiver for 14 years as she battled brain cancer, suffering many symptoms of dementia later in her fight.

I love the idea of the lights! I wish I had thought of that one! Genius! Thanks for sharing it.

I, too, struggled with smells and found that scented baby wipes worked best for this than any of the way higher priced ‘adult’ brands.

Thanks again for sharing!

Peace,

@tsoy

Hey There,

I just joined, I care for my soon to be 94 year old Mother with dementia, I’d say late stage at this point. Since ideas and plans you put into action today may not work tomorrow, I think a site/group like this can be helpful to share ideas and methods of coping with issues. That is why I joined. I know I wish I had been more clever sooner, you can’t think of everything, so ideas will work for one person and not for another. For intendance, over a year ago my Mother got up during the night and opened the front door, the next day I installed a dead bolt with a key on each side. She was having trouble finding her bathroom at night, which was literally 10 steps from her bed, so I installed a string of those tube lights on the bathroom wall leading to the toilet. Now we are using doggie poop bags for Mom’s soiled briefs, it really controls to odder. Wish I had thought of that one months ago! Anyway I’m looking forward to getting more, better ideas for copping here.

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A BIG Welcome! The lights and the doggie poop bags are both great ideas that I had not thought of, so thanks for adding value for the rest of us before you even know us! I’m implementing both today! Hope I can return the ideas to you as we participate in this group.

@tsoy

Hey There,

I just joined, I care for my soon to be 94 year old Mother with dementia, I’d say late stage at this point. Since ideas and plans you put into action today may not work tomorrow, I think a site/group like this can be helpful to share ideas and methods of coping with issues. That is why I joined. I know I wish I had been more clever sooner, you can’t think of everything, so ideas will work for one person and not for another. For intendance, over a year ago my Mother got up during the night and opened the front door, the next day I installed a dead bolt with a key on each side. She was having trouble finding her bathroom at night, which was literally 10 steps from her bed, so I installed a string of those tube lights on the bathroom wall leading to the toilet. Now we are using doggie poop bags for Mom’s soiled briefs, it really controls to odder. Wish I had thought of that one months ago! Anyway I’m looking forward to getting more, better ideas for copping here.

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You are welcome. You can buy extra large bags @ Petsmart. I can get a brief and a bed pad in one bag. I hope together we can come up with many helpful ideas to make like easier.

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