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.

providence1960 | @providence1960 | Feb 28, 2019

This site is so helpful...I like the idea of Nest. Thank you.
Spring is a blink away....and that makes me happy and hopeful for sunny days. I am sooo tired of winter.

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1 reply
Mentor
Scott, Volunteer Mentor | @IndianaScott | Feb 28, 2019
In reply to @providence1960 "This site is so helpful...I like the idea of Nest. Thank you. Spring is a blink..." + (show)
@providence1960

This site is so helpful...I like the idea of Nest. Thank you.
Spring is a blink away....and that makes me happy and hopeful for sunny days. I am sooo tired of winter.

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I am all in on welcoming spring this year! Been quite a winter so far and with more snow in our forecast it appears March is going to come in like a lion! At least we'll have the lamb to look forward to albeit later on! Cheers and think flowers! Here is one of my favorite varieties.

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dorisena | @dorisena | Apr 8, 2019

I need to clarify my background as I was not a caregiver for my husband before he died. He didn't allow that, but was in denial of his mental condition for years, and never was actually diagnosed, however we came close at one point. I studied on an Alzheimer's caregivers website to learn more about caring for a relative, who later died in a facility. Then I studied on a brain tumor caregiver's website when my husband was diagnosed and had surgery for a benign brain tumor. I studied with the help of the Alzheimer's group when my mother had a bleeding stroke and couldn't speak and was bedfast in a facility for over six years. All this time I was attempting to figure our my husband's inconsistent mental condition, and discussed it with my doctor. He said it was the beginning of Alzheimers, and I insisted the problem was frontal lobal because of the loss of his executive skills. He was in charge of the family business at the time and kept us in a bad financial condition because he really didn't manage and wouldn't cooperate with anyone. So I had to learn to manage through many a crisis and keep the household stable while he was making my life miserable and telling lies to make me mad enough to leave him. I didn't budge.
He was treated for prostate cancer, then a brain tumor, and then metasticized cancer of the spine. That took his life in short order, all the while he was estranged from me and not living in reality. He had an eating disorder and did not treat his diabetes, or his alcoholism. I am experienced enough to share ideas on surviving a mind going bad, for whatever reason. My advice is you can control things to a point, but you will not win against these terrible deseases, some of which are made worse by a person who refuses to cooperate in normal care for good health. Do not expect to be able to do a good job of care giving, just do what you can manage at the time and pray to God about the rest. Get some support for yourself and arrange time off for you. Do not feel that you absolutely must care for a person in your home whom you think might harm you. if you don't help yourself, you will not be able to help others. That is my motto for just about everything these days. Dorisena

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1 reply
lindasmith | @lindasmith | Apr 16, 2019
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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It seems like everyone thinks I’m the one who is losing my mind! Most people have no idea how frustrating answering and clarifying the same question is, and yet, the same person can play bridge. I am my husbands caregiver and I get so frustrated, but then I finally remind myself to take the focus off him and drop the judgement. For me, I get tired and know that the likely hood of all this effort is what? So am training my brain to stay in the present:

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1 reply
lindasmith | @lindasmith | Apr 16, 2019
In reply to @dorisena "I need to clarify my background as I was not a caregiver for my husband before..." + (show)
@dorisena

I need to clarify my background as I was not a caregiver for my husband before he died. He didn't allow that, but was in denial of his mental condition for years, and never was actually diagnosed, however we came close at one point. I studied on an Alzheimer's caregivers website to learn more about caring for a relative, who later died in a facility. Then I studied on a brain tumor caregiver's website when my husband was diagnosed and had surgery for a benign brain tumor. I studied with the help of the Alzheimer's group when my mother had a bleeding stroke and couldn't speak and was bedfast in a facility for over six years. All this time I was attempting to figure our my husband's inconsistent mental condition, and discussed it with my doctor. He said it was the beginning of Alzheimers, and I insisted the problem was frontal lobal because of the loss of his executive skills. He was in charge of the family business at the time and kept us in a bad financial condition because he really didn't manage and wouldn't cooperate with anyone. So I had to learn to manage through many a crisis and keep the household stable while he was making my life miserable and telling lies to make me mad enough to leave him. I didn't budge.
He was treated for prostate cancer, then a brain tumor, and then metasticized cancer of the spine. That took his life in short order, all the while he was estranged from me and not living in reality. He had an eating disorder and did not treat his diabetes, or his alcoholism. I am experienced enough to share ideas on surviving a mind going bad, for whatever reason. My advice is you can control things to a point, but you will not win against these terrible deseases, some of which are made worse by a person who refuses to cooperate in normal care for good health. Do not expect to be able to do a good job of care giving, just do what you can manage at the time and pray to God about the rest. Get some support for yourself and arrange time off for you. Do not feel that you absolutely must care for a person in your home whom you think might harm you. if you don't help yourself, you will not be able to help others. That is my motto for just about everything these days. Dorisena

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Thank you!

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Mentor
Scott, Volunteer Mentor | @IndianaScott | Apr 16, 2019
In reply to @lindasmith "It seems like everyone thinks I’m the one who is losing my mind! Most people have..." + (show)
@lindasmith

It seems like everyone thinks I’m the one who is losing my mind! Most people have no idea how frustrating answering and clarifying the same question is, and yet, the same person can play bridge. I am my husbands caregiver and I get so frustrated, but then I finally remind myself to take the focus off him and drop the judgement. For me, I get tired and know that the likely hood of all this effort is what? So am training my brain to stay in the present:

Jump to this post

Hello @lindasmith I know each patient and their journey in this is different, however I did come to grips with one thing while my wife and my MIL were on theirs.

I had to learn to do what I simply called 'suspending logic' with them. In their cases the disease was what caused their mental deficits so no amount of trying to correct or explain did any good. So I suspended logic and just began to go with THEIR flow.

Not for everyone I'm sure, but it was a significant help to us in our journeys.

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dorisena | @dorisena | Apr 16, 2019

Very wise thinking. Each journey needs to be traveled on the best responses for each situation, and you need to figure it out to some degree. I can't say that I suspended logic and left a lot of the understanding to the period of time after they were gone. I need to find the logic in time because it is necessary for my healing and forgiveness. It is very helpful to be surrounded by some comfort and support, and I didn't have much of that. And I was blamed for the problems in the first place, so that stopped my efforts in reaching out for help. I don't have anger in my heart over my past anymore, and I managed to find a way to live comfortably without losing my home. Life is good on the farm at age 83. I have some peace of mind. It has all worked out o.k. Dorisena

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1 reply
Mentor
Scott, Volunteer Mentor | @IndianaScott | Apr 16, 2019
In reply to @dorisena "Very wise thinking. Each journey needs to be traveled on the best responses for each situation,..." + (show)
@dorisena

Very wise thinking. Each journey needs to be traveled on the best responses for each situation, and you need to figure it out to some degree. I can't say that I suspended logic and left a lot of the understanding to the period of time after they were gone. I need to find the logic in time because it is necessary for my healing and forgiveness. It is very helpful to be surrounded by some comfort and support, and I didn't have much of that. And I was blamed for the problems in the first place, so that stopped my efforts in reaching out for help. I don't have anger in my heart over my past anymore, and I managed to find a way to live comfortably without losing my home. Life is good on the farm at age 83. I have some peace of mind. It has all worked out o.k. Dorisena

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Hi @dorisena So delightful to hear you are doing well! Now I want to go watch an episode of my favorite old farm TV show — Green Acres!

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dorisena | @dorisena | Apr 16, 2019

Scott, I am so glad you enjoy fairy tales. We tried to get our grandchildren to watch the show so they would understand how TV was in the early days, and they couldn't identify with any reason why we would watch such a show. They didn't understand the term "farce." Our grandchildren learned the real farm life and showed champion animals at the fair. They got big checks in the auction of their market animals and spent it going to agricultural college. So they couldn't identify with the silly humor of that show. We never thought of it as a farm show, however. It was just silly Hollywood humor. We laughed.
A neighboring homestead is named "Green Acres" and we smile when we drive by. Our grandchildren don't get it. Dorisena

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 25, 2019

Hello All:

I just read an article about confabulation, or "making up information that is not true when the real memory is not there." I never heard of that word before, but interestingly enough it refers to exaggeration and/or made up stories that folks invent who have cognitive impairment. I thought you might find it interesting and helpful as well.
https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/newsfeed-post/repost-how-big-was-that-fish/
Will you share any experiences you have had with this and how you handled it?

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