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.

@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?

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

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@vickys

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

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Glad that it helped you, @vickys!

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

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@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?

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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

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@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?

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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. 🥴

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@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

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Remain in peace, Dorisena

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@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. 🥴

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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.

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@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.

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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

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@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

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@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!!

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@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

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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.

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@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.

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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

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