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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.

Mentor
Scott, Volunteer Mentor | @IndianaScott | Aug 11, 2018
In reply to @dianajane "My heart goes out to you and your family. It is a difficult disease for all..." + (show)
@dianajane

My heart goes out to you and your family. It is a difficult disease for all involved. I don't know what I'd do if Didn't have family & friend's support. I'd like to join the discussion. My husb has PPA Alzheimer's. Not caused by stroke.He hasn't been able to "find his words" since initial diagnosis. Won't try to speak. Very aware of his illness. Gets embarrassed.
Cannot write. I'm grieving a loss. Trying to take one day at a time. We both have good & bad days. I cherish days he feels good. Sorry to be ranting. Caregiving is PATIENCE. Looking forward to sharing my ideas and hearing others. Diana

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Good morning @mbabkk Being supportive of a main caregiver is huge! I can say this as a well seasoned main caregiver for over 14 years for my wife. I have always said I'd be a rich man if I had a nickel for each person who said to me 'take care of yourself' and then left without offering me any assistance or support. Only two people did support me through our journey and they were truly invaluable and worth their weight in gold! Don't ever underestimate your value to the caregiver you support!

As for trying your best -- that is all anyone can do!

I wish you continued strength, courage, and peace.

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1 reply
mbabkk | @mbabkk | Aug 11, 2018
In reply to @dianajane "My heart goes out to you and your family. It is a difficult disease for all..." + (show)
@dianajane

My heart goes out to you and your family. It is a difficult disease for all involved. I don't know what I'd do if Didn't have family & friend's support. I'd like to join the discussion. My husb has PPA Alzheimer's. Not caused by stroke.He hasn't been able to "find his words" since initial diagnosis. Won't try to speak. Very aware of his illness. Gets embarrassed.
Cannot write. I'm grieving a loss. Trying to take one day at a time. We both have good & bad days. I cherish days he feels good. Sorry to be ranting. Caregiving is PATIENCE. Looking forward to sharing my ideas and hearing others. Diana

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Thank you so much - it is not an easy task as I am an outsider to a large degree justvtryingn

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Mentor
Scott, Volunteer Mentor | @IndianaScott | Aug 11, 2018
In reply to @bflattenor "well I should join this group as well as the cancer group I am already writing..." + (show)
@bflattenor

well I should join this group as well as the cancer group I am already writing to about my rare form of leukemia.!st my mother with her imaginary people all over INSIDE her house. Her shrink told me most people have them on the roof,but she had to invite them in. It was almost comical until she switched them from angels and fairies to devils and gestopos.Next came my sister who was so upset when her son died,she stopped taking her thyroid & diabetes medications.Then she became my problem.The fun part was the mantra she chose to call out all day starting softly and ending with a screen. The word she chose was HELP! This went over big in the care home ;so the evicted her.Next was my husband who had 7 strokes caused by A Fib. He became quite child like except for his saxophone ;which was almost as good as when he was playing professionally.(aka MUSIC & THE BRAIN by Sachs)Five years later he passed on and as a friend told me,I became a member of the unofficial widows club. A year later I acquired a "boyfriend" who is now 90 and has dementia. I hope it's not contagious.LOVE TO YOU ALL,Barbara

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Hello @bflattenor (nice screen name by the way!) nice to e-meet you here on Mayo Connect and the Caregiving community. I am Scott and my wife had brain cancer, which brought with it many dementia-like symptoms and my mother-in-law also had dementia for over 10 years.

You are certainly a well-seasoned caregiver with all the folks you have taken care of! Quite amazing! It is wonderful you have done so much for so many! I, too, am a member of the Widowers Club. Still wishing I wasn't, but such life and what we get handed, right?

Your comment about music was interesting. I know in my MIL's journey after she became uncommunicative she could sing old songs she had learned as a young girl in Italian! It was the only time we would see her smile at that time too. Nice to hear that love of music came through for your husband as well and with a musical instrument yet! Lovely!

I agree with you that the phase of repetitive phrases can be one of the most trying on our patience as caregivers! My wife would call my name in the same way. Softly at first, then gaining in repetition and volume. I cannot imagine how tough it would be if it had been the word 'help' instead!

Was there a certain type of music your husband enjoyed playing most?

Strength, courage, and peace!

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dianajane | @dianajane | Aug 14, 2018
In reply to @mbabkk "Playing music to Alzheimer’s patient is proven to be a major help." + (show)
@mbabkk

Playing music to Alzheimer’s patient is proven to be a major help.

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Hi there. Yes music is good for patients with dementia. My husb has Primary Progressive Aphasia non stroke related. And Alzheimer's. He enjoys music from the past...his German songs I play a lot. but he can't sing along. Can't find the words. Doesn't speak much either. If he tries he makes no sense. Can't point or show me either. One day at a time. I like this caring connection.

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Mentor
Scott, Volunteer Mentor | @IndianaScott | Aug 14, 2018
In reply to @mbabkk "Playing music to Alzheimer’s patient is proven to be a major help." + (show)
@mbabkk

Playing music to Alzheimer’s patient is proven to be a major help.

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Hello again @dianajane Good to hear your husband enjoys his music! I'm not familiar with much German music. I'll have to look some up!

One day at a time...the only way to go 🙂

I like that you are here too in Connect!

Strength, courage, and peace!

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daisy2011 | @daisy2011 | Sep 1, 2018
In reply to @IndianaScott "Good morning @mbabkk Being supportive of a main caregiver is huge! I can say this as..." + (show)
@IndianaScott

Good morning @mbabkk Being supportive of a main caregiver is huge! I can say this as a well seasoned main caregiver for over 14 years for my wife. I have always said I'd be a rich man if I had a nickel for each person who said to me 'take care of yourself' and then left without offering me any assistance or support. Only two people did support me through our journey and they were truly invaluable and worth their weight in gold! Don't ever underestimate your value to the caregiver you support!

As for trying your best -- that is all anyone can do!

I wish you continued strength, courage, and peace.

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Hi There
I'd love the way when you described you would be rich. It is a hard journey.

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1 reply
daisy2011 | @daisy2011 | Sep 1, 2018

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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mbabkk | @mbabkk | Sep 1, 2018
In reply to @daisy2011 "Hi There As this disease progresses I n getting very lonely. My husband doesn't talk very..." + (show)
@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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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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Mentor
Scott, Volunteer Mentor | @IndianaScott | Sep 1, 2018
In reply to @daisy2011 "Hi There I'd love the way when you described you would be rich. It is a..." + (show)
@daisy2011

Hi There
I'd love the way when you described you would be rich. It is a hard journey.

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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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