Caring for someone with dementia / Alzheimer's

Posted by Scott, Volunteer Mentor @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.

@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.

REPLY

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

REPLY
@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

Jump to this post

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!

REPLY

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

REPLY

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?

REPLY
@hopeful33250

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?

Jump to this post

This is excellent! It explains so much. Thank you!

REPLY
@vickys

This is excellent! It explains so much. Thank you!

Jump to this post

Glad that it helped you, @vickys!

Are you comfortable sharing how you have experienced confabulation and how you generally handle this problem?

REPLY
@hopeful33250

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?

Jump to this post

i learned about confabulation when I studied narcissism for five years to be able to live with my impossible husband as he aged. We finally recognized his problem as dementia but could not save the declining business he was not managing well before he died.
It is good to know that these problems are not all deliberate self inflicted issues so I can rest in the thought that at some point my late husband, who was very selfish and mean to me in the end, was not able mentally to function cooperatively with his impairment. At one point my life was in danger, so we need to make every effort to take confabulation very seriously as it progresses. I should have left him but then there would have been no one to care for him except one son, and I couldn't put that responsibility totally on him. He died of cancer and I am left to heal from the trauma. I am doing very well and am at peace. Dorisena

REPLY
@hopeful33250

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?

Jump to this post

Last fall after recently being at a funeral for one of my husband’s best friends who had been cremated, we had lunch with my husband’s brother and sister in law. My husband told them that they’d brought the casket over to the grave and just dumped the body in. They both looked at me questioning with their eyes. I gently shook my head and the subject was changed. 🥴

REPLY
@dorisena

i learned about confabulation when I studied narcissism for five years to be able to live with my impossible husband as he aged. We finally recognized his problem as dementia but could not save the declining business he was not managing well before he died.
It is good to know that these problems are not all deliberate self inflicted issues so I can rest in the thought that at some point my late husband, who was very selfish and mean to me in the end, was not able mentally to function cooperatively with his impairment. At one point my life was in danger, so we need to make every effort to take confabulation very seriously as it progresses. I should have left him but then there would have been no one to care for him except one son, and I couldn't put that responsibility totally on him. He died of cancer and I am left to heal from the trauma. I am doing very well and am at peace. Dorisena

Jump to this post

Remain in peace, Dorisena

REPLY
@cmael

Last fall after recently being at a funeral for one of my husband’s best friends who had been cremated, we had lunch with my husband’s brother and sister in law. My husband told them that they’d brought the casket over to the grave and just dumped the body in. They both looked at me questioning with their eyes. I gently shook my head and the subject was changed. 🥴

Jump to this post

Hello @dorisena and @cmael,
I appreciate you sharing real-life examples of confabulation and I applaud you both for dealing with a difficult personality.
@dorisena, I am glad to hear that you are at peace and recovering from the trauma of living with a very difficult man.
@cmael It sounds as if you are handling this odd behavior in a graceful manner.

REPLY
@hopeful33250

Hello @dorisena and @cmael,
I appreciate you sharing real-life examples of confabulation and I applaud you both for dealing with a difficult personality.
@dorisena, I am glad to hear that you are at peace and recovering from the trauma of living with a very difficult man.
@cmael It sounds as if you are handling this odd behavior in a graceful manner.

Jump to this post

Thanks for the support. I want the world to know that when you make a choice to live with someone you are to be respected for continuing to do that to the end. I have been criticized by a few people of authority who believe I should have left the marriage at some point, and they fault me for not doing that, so I must trust that I followed God's plan for me by taking care of a difficult person whom others would not been able to succeed with for very long. Yes, I did a job that no one else could have done. My reward will be in Heaven.
I still believe in marriage, but now I also believe in divorce, which I did not for many years, when there is abuse that is damaging. mentally or physically. I also believe in the concept of co-morbidity, where more than one disease or issue contributes to total decline.
I fought the good cause by donating some of my late husbands wealth to a new domestic violence center for men and women victims.
That makes me feel very good every day. Kind of funny, isn't it? Dorisena

REPLY
@dorisena

Thanks for the support. I want the world to know that when you make a choice to live with someone you are to be respected for continuing to do that to the end. I have been criticized by a few people of authority who believe I should have left the marriage at some point, and they fault me for not doing that, so I must trust that I followed God's plan for me by taking care of a difficult person whom others would not been able to succeed with for very long. Yes, I did a job that no one else could have done. My reward will be in Heaven.
I still believe in marriage, but now I also believe in divorce, which I did not for many years, when there is abuse that is damaging. mentally or physically. I also believe in the concept of co-morbidity, where more than one disease or issue contributes to total decline.
I fought the good cause by donating some of my late husbands wealth to a new domestic violence center for men and women victims.
That makes me feel very good every day. Kind of funny, isn't it? Dorisena

Jump to this post

@dorisena What an unbelievable thoughtful way to invest your late husband's wealth! While I've never met you, I'm proud of you beyond measure!!

REPLY
@dorisena

Thanks for the support. I want the world to know that when you make a choice to live with someone you are to be respected for continuing to do that to the end. I have been criticized by a few people of authority who believe I should have left the marriage at some point, and they fault me for not doing that, so I must trust that I followed God's plan for me by taking care of a difficult person whom others would not been able to succeed with for very long. Yes, I did a job that no one else could have done. My reward will be in Heaven.
I still believe in marriage, but now I also believe in divorce, which I did not for many years, when there is abuse that is damaging. mentally or physically. I also believe in the concept of co-morbidity, where more than one disease or issue contributes to total decline.
I fought the good cause by donating some of my late husbands wealth to a new domestic violence center for men and women victims.
That makes me feel very good every day. Kind of funny, isn't it? Dorisena

Jump to this post

That was an amazingly thoughtful thing to donate your husband’s stuff to such a center. What a great model you are for the rest of us.

REPLY
@sallysue

That was an amazingly thoughtful thing to donate your husband’s stuff to such a center. What a great model you are for the rest of us.

Jump to this post

When I was part of a support group on the web for studying narcissism and domestic abuse, many victims wanted to do revenge and encouraged me greatly, to try to make me feel better in some way. I could never accept revenge as a response due to my Christian beliefs and developed a sense of humor to cover my depression at times. When there was a campaign years after his death and plenty of opportunities to donate, for tax reasons mostly when I sold land, my daughter encouraged me to donate to the Domestic Violence Center campaign and it turned out to fit my need for justice without revenge and I have helped others in the community greatly. It feels good and some days I can even laugh at the idea that my husband would have never seen the need for such a charitable donation.
Your response to abuse and grief is important for healing and peace of mind. I recommend it if you are able. I sent his clothes to a Children's Home that specializes in therapy and mental health rehab and has clients to the age of 21, so they could use large clothing.
I have not done other charity in his memory, but he was a well known businessman and I wanted to maintain our family respect in a manner that was honest but not revealing of his problems. Only a few people knew how he treated me for so many years. It is over and I have resisted journaling the bad parts of our life or condemnation. We learn from this to help others. Dorisena

REPLY
Please login or register to post a reply.