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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.

denisefrey | @denisefrey | May 17, 2023

My husband's brother has FTD Dementia with Aphasia and it has become exponentially worse over the last three years. He's only 68 and the signs began 10 - 15 years ago. We didn't know what it was until he ended up in the ER two months ago. He spent 8 weeks in the hospital and last week we moved him into a memory care community close to us. We are his primary caregivers (I'm now his legal guardian and conservator). The hardest parts right now is that he's depressed - sleeps most of the day and only leaves his room twice a day to eat, he won't shower or change his clothes, and because of his loss of language it's very hard to talk with him. He has an extremely limited vocabulary so he doesn't understand our words, and he only has a few words to express how he's feeling. It's so very very sad.

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1 reply
support | @support | May 17, 2023
In reply to @IndianaScott "Hello @janet7 Just wanted to add a couple of observations based on my experiences with my..." + (show)
@IndianaScott

Hello @janet7 Just wanted to add a couple of observations based on my experiences with my wife. First, for years, she craved and needed her routine. Her days were identical for her and that was one of the only ways she came anywhere close to controlling her anxiety. I believe her routine was the only thing that gave her any sense of control in a life that was totally out of her control due to her disease.

Second, one of the things I learned while working for the National Alzheimers and Related Diseases organization, was that any change in a person with dementia's life can cause a noticeable downward change in their abilities. I just say this to perhaps prepare you for this possible outcome with your big change coming.

I'd also add the comment, just from my review of literature and studies, that while exercise is a good thing, there is no proof it has any actual positive impacts on the rate of decline in people with dementia or alleviates their disease.

Strength, Courage, & Peace

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Thanks Scott, I'm new to this and looking through posts has helped me to remember things that were said to me to help me care for my husband. He can turn from the man I knew for 0ver 68 years to an angry person that I cannot reason with and then he gets calm and loving. So many things I need help with. He doesn't want to socialize , take walks-just if more content to stay at home. He is almost blind, has cancer and prostate problems.

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1 reply
simsha | @simsha | May 17, 2023
In reply to @mrjohnwebb "Hello all, I am the primary caregiver for my 73 year old husband who has early..." + (show)
@mrjohnwebb

Hello all,
I am the primary caregiver for my 73 year old husband who has early stage Alzheimer’s and my 83 year old mom who lives with us. She has some form of dementia as well. I am 61. My dad died on 10/4/22 from stomach cancer so mom has come to live with us.
We’ve decided to move back to WA from AZ to be closer to our youngest daughter who is becoming a doctor. We just purchased a home about 20 minutes from her and are in the process of selling our AZ home. I will be diligent about not respecting her life and boundaries as I don’t want to burden her with our aging issues. Life is definitely a whirlwind and very stressful at times as any project or task that demands processes needs to be done by me. I am also the only one of the three of us who drives. Yikes! I try to make time each day for us to find joy and laugh together and to discuss the things we have to be grateful about. Some days I do a better job than others. I am praying we are making the right decision about making a move while my husband is excited about it and can hopefully learn where things are in our new home. It is a risk but I believe the right one. I look forward to learning from the group and supporting each other.
Wishing you all strength, peace and courage on the journey.
Kim Possible

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You sound like a strong woman, full of courage. Your positivity amidst the trials struck a chord. Laughter…we’d both enjoy hearing that again.

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1 reply
simsha | @simsha | May 17, 2023
In reply to @IndianaScott "Hello @janet7 Just wanted to add a couple of observations based on my experiences with my..." + (show)
@IndianaScott

Hello @janet7 Just wanted to add a couple of observations based on my experiences with my wife. First, for years, she craved and needed her routine. Her days were identical for her and that was one of the only ways she came anywhere close to controlling her anxiety. I believe her routine was the only thing that gave her any sense of control in a life that was totally out of her control due to her disease.

Second, one of the things I learned while working for the National Alzheimers and Related Diseases organization, was that any change in a person with dementia's life can cause a noticeable downward change in their abilities. I just say this to perhaps prepare you for this possible outcome with your big change coming.

I'd also add the comment, just from my review of literature and studies, that while exercise is a good thing, there is no proof it has any actual positive impacts on the rate of decline in people with dementia or alleviates their disease.

Strength, Courage, & Peace

Jump to this post

Your reminder of the impact of change was helpful. As we look into moving to a CCRC (Continuing Care Residential Communities) the changes are especially noticeable. There seems to be a short window of time between “it’s okay” and resistance. Thank you for sharing.

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simsha | @simsha | May 17, 2023
In reply to @support "Thanks Scott, I'm new to this and looking through posts has helped me to remember things..." + (show)
@support

Thanks Scott, I'm new to this and looking through posts has helped me to remember things that were said to me to help me care for my husband. He can turn from the man I knew for 0ver 68 years to an angry person that I cannot reason with and then he gets calm and loving. So many things I need help with. He doesn't want to socialize , take walks-just if more content to stay at home. He is almost blind, has cancer and prostate problems.

Jump to this post

How difficult to experience the emotional ups and downs and maintain your inner strength. Per your comment about helpful reminders from other posts, I’m going to do the same. Thank you.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | May 17, 2023
In reply to @denisefrey "My husband's brother has FTD Dementia with Aphasia and it has become exponentially worse over the..." + (show)
@denisefrey

My husband's brother has FTD Dementia with Aphasia and it has become exponentially worse over the last three years. He's only 68 and the signs began 10 - 15 years ago. We didn't know what it was until he ended up in the ER two months ago. He spent 8 weeks in the hospital and last week we moved him into a memory care community close to us. We are his primary caregivers (I'm now his legal guardian and conservator). The hardest parts right now is that he's depressed - sleeps most of the day and only leaves his room twice a day to eat, he won't shower or change his clothes, and because of his loss of language it's very hard to talk with him. He has an extremely limited vocabulary so he doesn't understand our words, and he only has a few words to express how he's feeling. It's so very very sad.

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@denisefrey You have certainly taken on a huge job! I certainly respect you for doing so. As a nurse who dealt with many elderly patients and those with dementia, I can say that what your brother in law is going through is pretty common. When you think about it, he went from his home to 8 weeks in a hospital (which is constantly busy with lots of people), then to another new place. But he should adjust with time. ( Just a hospital stay of a few days can cause disorientation and confusion.) Put lots of his personal things in his room to help him feel at home.
You’ve done a wonderful thing for your BIL and in time it will be OK.

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1 reply
denisefrey | @denisefrey | May 18, 2023
In reply to @becsbuddy "@denisefrey You have certainly taken on a huge job! I certainly respect you for doing so...." + (show)
@becsbuddy

@denisefrey You have certainly taken on a huge job! I certainly respect you for doing so. As a nurse who dealt with many elderly patients and those with dementia, I can say that what your brother in law is going through is pretty common. When you think about it, he went from his home to 8 weeks in a hospital (which is constantly busy with lots of people), then to another new place. But he should adjust with time. ( Just a hospital stay of a few days can cause disorientation and confusion.) Put lots of his personal things in his room to help him feel at home.
You’ve done a wonderful thing for your BIL and in time it will be OK.

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Thank you for this insight. Staying in the hospital 8 weeks would be hard for anyone. This is the first time we've known anyone with dementia, so there are many things to learn!

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support | @support | May 18, 2023
In reply to @simsha "You sound like a strong woman, full of courage. Your positivity amidst the trials struck a..." + (show)
@simsha

You sound like a strong woman, full of courage. Your positivity amidst the trials struck a chord. Laughter…we’d both enjoy hearing that again.

Jump to this post

Thanks for your reply. Your words made me feel better

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simsha | @simsha | May 18, 2023
In reply to @donnajane "Please join me in to this group. I am caring for my husband with early stages..." + (show)
@donnajane

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.

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Thank you for sharing as one of the frustrations you named is becoming a growing one for me: what my husband can do in front of others is at odds with what he can do at home. Often, I find people negate my concerns since he appears fine. Not being validated is another silent, yet exhausting piece of walking through the disease.

REPLY
1 reply
johnna16 | @johnna16 | May 19, 2023
In reply to @simsha "Thank you for sharing as one of the frustrations you named is becoming a growing one..." + (show)
@simsha

Thank you for sharing as one of the frustrations you named is becoming a growing one for me: what my husband can do in front of others is at odds with what he can do at home. Often, I find people negate my concerns since he appears fine. Not being validated is another silent, yet exhausting piece of walking through the disease.

Jump to this post

What I find interesting is that my husband constantly repeats at home. When we go to visit my sister and have dinner there, he becomes very quiet (which is not like him) but it's as if he controls himself. The minute we are home it starts again- what time is it, what day is it etc etc.

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