1. < Caregivers: Dementia
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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.

Kim Webb | @mrjohnwebb | Oct 22, 2022

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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1 reply
cburkett | @cburkett | Oct 23, 2022

Woman to woman, I’m grateful that God made you who you are. Thank you for being such a solid and purposeful helper to your family. You just gave health-related courage to another and I’m grateful.

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1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Oct 23, 2022
In reply to @cburkett "Woman to woman, I’m grateful that God made you who you are. Thank you for being..." + (show)
@cburkett

Woman to woman, I’m grateful that God made you who you are. Thank you for being such a solid and purposeful helper to your family. You just gave health-related courage to another and I’m grateful.

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@cburkett I see you have been a member for several years and have posted only a couple of times! Sp, welcome to Mayo Clinic Connect.

When you have the time, and would like to share, I'd love to hear the story behind your post?
Ginger

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john316ga | @john316ga | Oct 23, 2022

My husband of 51 years has Lewy Body Dementia. He’s 78 now, but the disease started out several years ago with what we thought were very vivid dreams. Not dreams, but full blown hallucinations. Taking care of his needs is the biggest challenge of my life. I will continue to love and care for him throughout his life or mine. As hard as it is for me, it’s an absolute hell for him. If it were reversed, I know he would do the same for me.

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2 replies
Mentor
Scott, Volunteer Mentor | @IndianaScott | Oct 23, 2022
In reply to @john316ga "My husband of 51 years has Lewy Body Dementia. He’s 78 now, but the disease started..." + (show)
@john316ga

My husband of 51 years has Lewy Body Dementia. He’s 78 now, but the disease started out several years ago with what we thought were very vivid dreams. Not dreams, but full blown hallucinations. Taking care of his needs is the biggest challenge of my life. I will continue to love and care for him throughout his life or mine. As hard as it is for me, it’s an absolute hell for him. If it were reversed, I know he would do the same for me.

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Hi, @john316ga I'm sorry to read of your husband's health journey. I'm Scott and I was my wife's caregiver during her journey with brain cancer, which gave her many dementia-like symptoms as well as for my MIL who had Frontotemporal Dementia.

I agree with you that caregiving is a tough job and your additional comment rang equally true to me in that I always felt I had the easy part of the deal since my wife was fighting for her life every day and I only had to be her caregiver.

I hope the sun is shining wherever you are today!

Strength, Courage, & Peace

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Teri | @tsc | Oct 23, 2022
In reply to @jeaniecdn "Perhaps 10-15 years ago my husband started to become thoughtless and even a bit rude to..." + (show)
@jeaniecdn

Perhaps 10-15 years ago my husband started to become thoughtless and even a bit rude to me. He was a CPA With his own business. At that time it seemed he loved his business and gave it more attention than me or family. I am in a wheelchair but whenever we went out to eat with friends, he would leave me stranded and friends or my children would have to help me. He had a knee problem and he would use anything as excuse why he couldn’t help me. Then in 2019 he said his knee gave out and fell in the house not injuring himself but i needed to call fire department for a lift up. He saw his PCP and he did all kinds of test on him ruling out many things thinking maybe he had a mini stroke, including brain scan and then send him to neurologist for possible a form of dementia. He of course was having many problems in his office especially with the computer and balancing numbers. So the end of that year my son helped him close his office. My husband didn’t really do anything to help. I believe he was in denial of his problems. His life was his business.. in 2020 the neurologist pointed out some reasons for memory loss but according to his age not unreasonable age 87. Another CPA in the area gave him a small cubicle in his office as My husband felt he had to finish up his business. He had sold his business to this CPA. He went to that office daily for about a month however he was becoming incontenent of urine and while there would wet himself so the CPA employees complained of my husband odor and eventually i think the CPA asked him to not come back, as about 4 months later he stopped going to that office but continued to be on his home office computer running his business he still thought he had. Taking CE courses to be able to renew his license. That kept him “ out of my hair” because if he wasn’t in his home office he had TV on loud with either FOX news or football or baseball. I enjoy baseball with TV on all his waking hours. So of course id ask him nicely to tun it down and he had become hard of hearing so he needed to hear. I’d become angry. I tried just about everything I could hoping he would be thoughtful of me. Nothing worked. Here it is 3 years later and he sleeps up to 17 hrs a day eats very little sometimes has to be fed, has to be sponge bathed in bed. Is incontenent of BM as well as urine. I am sad for him. I have car givers for him 7 hr 7 days a week. So if you as a spouse or loved one have this kind of experience with your spouse or loved one, and suspect problems with brain, you probably are not imagining it. All his family outside of our home jus said “ oh dad has always acted that way.” But they need to live with that person 24 hr for a week and then I wonder if they would still say the same thing.
This type of condition is so devastating to me, it is I believe the hardest I’ve had to endure in my now 89 years. God bless all of you that have to experience similar conditions with your loved ones.

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It's heartbreaking @jeaniecdn, isn't it? Yet you somehow find the strength to manage. You're right. When I retired I noted changes in my husband's behavior, most of all in his ability to use the proper words. It was difficult for me to come to terms with the number of deficits he was experiencing. Now I've just learned to roll with them, but worry about what the future will bring. He has moderate Alzheimer's Disease now, still functions pretty well, although I am his memory and caregiver/guide. I can leave him for a few hours, but that's all. He likes to sleep, eat and watch what the neighbors are doing. We go for a 40 minute walks most mornings. He broke his hip in January, I was woriied the surgery and the stay in the rehab facility would worsen his condition, but it didn't. I wish you the best. Take care of yourself.

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Kim Webb | @mrjohnwebb | Oct 24, 2022
In reply to @john316ga "My husband of 51 years has Lewy Body Dementia. He’s 78 now, but the disease started..." + (show)
@john316ga

My husband of 51 years has Lewy Body Dementia. He’s 78 now, but the disease started out several years ago with what we thought were very vivid dreams. Not dreams, but full blown hallucinations. Taking care of his needs is the biggest challenge of my life. I will continue to love and care for him throughout his life or mine. As hard as it is for me, it’s an absolute hell for him. If it were reversed, I know he would do the same for me.

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My husband is being tested for Lewy Body Dementia with a DAT test and skin biopsy due to REM sleep disturbance. He has already been diagnosed with Dis-executive Alzheimer’s. This journey is a challenging one to be sure!

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buggirl55 | @buggirl55 | May 2, 2023

i am currently caring for my 86 yo mom and my dad wanted her home for hospice yet is clueless about dementia and her care. so i am the main caregiver and it includes making sure my dad doens't get her up out of bed to fall again (she falls every week for past 6 or so months). he argues with her, calls her unreasonable, etc. he just doesn't understand.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | May 13, 2023
In reply to @buggirl55 "i am currently caring for my 86 yo mom and my dad wanted her home for..." + (show)
@buggirl55

i am currently caring for my 86 yo mom and my dad wanted her home for hospice yet is clueless about dementia and her care. so i am the main caregiver and it includes making sure my dad doens't get her up out of bed to fall again (she falls every week for past 6 or so months). he argues with her, calls her unreasonable, etc. he just doesn't understand.

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@buggirl55, thank you for starting a new discussion about caring for both parents, especially when one doesn't understand dementia

- Dementia: When the other parent (spouse) isn't helpful https://connect.mayoclinic.org/discussion/when-the-other-parent-spouse-isnt-helpful/

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simsha | @simsha | May 16, 2023

My husband has multiple medical diagnoses; however, the one that is creating the most significant issues is dementia (previously dx as FTD and now unknown etiology). He’s changing quickly with marked executive function lapses in addition to diminished cognitive functioning. It’s as if we’re living in different worlds, yet I’m responsible for straddling both to maintain balance -which is eroding. Counseling seems to have lost its function due to seemingly weekly changes. I’m looking for a solid book as well as a open, understanding forum to share as my health is now being negatively
affected. It now feels as if I’m the “identified problem” as we try to walk through the various aspects of the disease.

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