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 group and 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.

It really helps to know that we are in this together and can support each other in good choices, if there are any to be made. .We also learn a lot to share with others and not feel so alone in the journey. 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 Your reward may be in heaven, but it’s also here on earth. You set such a good example to us and to others about doing what’s right. In caring for someone who couldn’t care for himself. I believe that he knew you were there and he loved you for it. And probably regretted his prior behaviors. You and your spirit are definitely an inspiration. Tank you

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@hopeful33250

Hello @jshdma

While I'm certainly not a theologian nor a medical/mental health professional, after reading your recent post I tend to agree with @IndianaScott, in that I do not believe God sends this kind of thing to someone in order to "test" them.

I do believe that in this world many difficult things do happen to us as a result of illness/disease and also poor choices that we make as individuals. Sometimes those poor choices result in difficult health problems, both physically, emotionally and cognitively. It sounds as if your brother's problems are a result of schizophrenia as well as addictions. It also sounds as if you have done a lot to try and help him but I can understand you're wanting to be free from this burden.

A couple of thoughts come to mind: Have you talked with a trained counselor? Doing so might help you release yourself from any guilt you might be carrying now.

Also, have you considered contacting an attorney to see how you can extricate yourself financially and personally from the responsibility of caring for your brother?

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@jshdma Hello, I’m just adding my 2cents worth to @hopeful33250 says. I am so sorry things are so difficult for you. I agree with seeing a counselor or therapist. Therapy helped me so much in dealing with my illness and it’s effects on everything. Maybe a therapist could give some helpful advice to you. Maybe your brother would talk to someone.
Have you also sat down with his siblings to explain your needs and some things they could do to help. Like some meals for your freezer, or staying with him a few hours so you could nap or run errands. Maybe, also ask them to consider helping to cover some of the costs.
Does your brother see a psychiatrist for his schizophrenia? Or is there a mental health agency in town? You might ask him/her for suggestions. You must also think about yourself and your family. Such a difficult situation you are in. Let us know how else we can help

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You are misunderstanding my story, so perhaps I shouldn't be so straightforward. It was never a situation where he couldn't care for himself nor did he ever feel badly about his attitude. He never said he was sorry. He thought he knew best about his health but was ignorant about things, thinking that his control of everything showed his power and strength. He was in denial about any illness because he thought it showed moral weakness as a man, which his grandmother taught him. He thought women should be controlled at all times and told me if he was nice to me it would ruin me. He only liked that I cooked for him and pouted in later years when I cut out so much dessert because of his obesity and diabetes. I had no idea I was marrying an addictive, control freak because I noticed no signs of it before the marriage. I stuck it out for 50 years because of my marriage vows. It never got better. He spent time with other women in our small town and everyone knew it but me. When it did not cause me to leave him, he gave up that nonsense because he didn't like to spend his money on women. In his grandmother's culture, men did not provide for the household. Women had to earn the money to run the household with labor or selling produce. Men in that culture spent the farm income on whatever they wanted: two houses, race horses, automobiles, gambling and alcohol.
Lack of education and social learning keeps some cultures from improving and progressing. Women had no votes or rights and were dominated. This is the culture my husband brought to our marriage. I should write a book. Dorisena

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@dorisena

You are misunderstanding my story, so perhaps I shouldn't be so straightforward. It was never a situation where he couldn't care for himself nor did he ever feel badly about his attitude. He never said he was sorry. He thought he knew best about his health but was ignorant about things, thinking that his control of everything showed his power and strength. He was in denial about any illness because he thought it showed moral weakness as a man, which his grandmother taught him. He thought women should be controlled at all times and told me if he was nice to me it would ruin me. He only liked that I cooked for him and pouted in later years when I cut out so much dessert because of his obesity and diabetes. I had no idea I was marrying an addictive, control freak because I noticed no signs of it before the marriage. I stuck it out for 50 years because of my marriage vows. It never got better. He spent time with other women in our small town and everyone knew it but me. When it did not cause me to leave him, he gave up that nonsense because he didn't like to spend his money on women. In his grandmother's culture, men did not provide for the household. Women had to earn the money to run the household with labor or selling produce. Men in that culture spent the farm income on whatever they wanted: two houses, race horses, automobiles, gambling and alcohol.
Lack of education and social learning keeps some cultures from improving and progressing. Women had no votes or rights and were dominated. This is the culture my husband brought to our marriage. I should write a book. Dorisena

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dorisena. my heart goes,out to you. What a backward way to live. Praying for you to feel better about yourself…What a story.

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@dianajane

dorisena. my heart goes,out to you. What a backward way to live. Praying for you to feel better about yourself…What a story.

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Dianajane, I don't feel that my life was backward at all. I learned so much about my marriage from the stories my late husband's grandmother told me about her culture, and then figured out how to move forward with some success in maintaining some sanity in our modern attempt at farm life and business. Looking back, I think my husband was told that he would become rich farming, and he soon realized that wasn't true, so he pushed everyone involved harder until he made us sick trying. Actually he sort of drove himself nuts but he never really broke my self esteem or caused me to feel suicidal. He kept the same bad habits while I developed plans to succeed and get things accomplished while trying to understand his need for total control. But yes, I think his poor education and cultural influence from his grandmother who raised him slowly drove him nuts as he made wild decisions to boost up his sense of power and success.
He became a Narcissist and then declined into some type of psychopath in the end, and he told lies every day to impress himself and everyone else. He was mentally ill, but could speak in a way that sounded somewhat normal, if you didn't know the facts involved.
I had to avoid him, and that became easy as he wanted me gone from his life. Cancer did the job for him. I have studied for years and even spent ten years in college with my adult children to understand and restore myself. I am doing fine and feel a mission to help others
navigate the world of mental decline. I do not possess the proper credentials to direct change, but I sure can understand the problem!
I have been blessed with financial security in my late years, so I want to be a solution kind of person when possible. Some health problems can't be fixed, I realize, but I can offer helpful ideas to pursue. Each person is a different challenge. Dorisena

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I will list several worrisome habits I experienced that could be a precursor to full blown Alzheimer's, as I have learned it from my study. The experts say it can take years, however I had one friend whose husband had early onset AZ. I have read that loss of sense of smell is sometimes an early sign. I have read that loss of taste of food can be an early sign. The TV documentary about Hoarders reports that hoarding can be an early sign. Collecting things can develop into an irrational habit that overloads a home. Rocking side to side while walking can be a sign of mental disorder. Picking scabs off the body and eating them can be a troubling sign of mental problems. Some habits are signs of OCD, obsessive compulsive disorder, which can be genetic in families. I have experienced all these signs in my late husband and my sister and her family. It is often more than just the loss of rational speech. I continue to study. Dorisena

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@dorisena

I will list several worrisome habits I experienced that could be a precursor to full blown Alzheimer's, as I have learned it from my study. The experts say it can take years, however I had one friend whose husband had early onset AZ. I have read that loss of sense of smell is sometimes an early sign. I have read that loss of taste of food can be an early sign. The TV documentary about Hoarders reports that hoarding can be an early sign. Collecting things can develop into an irrational habit that overloads a home. Rocking side to side while walking can be a sign of mental disorder. Picking scabs off the body and eating them can be a troubling sign of mental problems. Some habits are signs of OCD, obsessive compulsive disorder, which can be genetic in families. I have experienced all these signs in my late husband and my sister and her family. It is often more than just the loss of rational speech. I continue to study. Dorisena

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@dorisena You are a dedicated learner. While knowledge is power, that same knowledge can be very depressing. This is all the more the case when you really can't do much with it. That happens when the intended benefactor rejects everything; also when knowledge does not lead to improving things.

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@jshdma

@dorisena You are a dedicated learner. While knowledge is power, that same knowledge can be very depressing. This is all the more the case when you really can't do much with it. That happens when the intended benefactor rejects everything; also when knowledge does not lead to improving things.

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I do not really get depressed. I try to use the knowledge I learned for the future, and hopefully that improves lives in the future. Children need to learn empathy by the age of five or six, according to the experts, and then they can grow up to have stable personalities to work with others in their lives. It is the key to good mental health as adults. We must begin the teaching very young as it is easier to accomplish. My children are successful adults despite the influence of their father. They loved him very much because he taught them vocational skills at a very young age. My past was not a totally black picture. They learned as well. Dorisena

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Hi everyone,
The time has come to open a new group dedicated to caring for someone who has dementia. Many of you have already participated in discussions centered around dementia, such as mild cognitive impairment, Alzheimer's, long term care, medications, activities, self care and more. Those discussions have been moved to the new group.

See the Caregivers: Dementia group here https://connect.mayoclinic.org/group/caregivers-dementia/.

– Follow the group
– Browse all topics
– Add a reply
– Start a new discussion

If you’re not sure how to do any of these things, see this step-by-step guide https://connect.mayoclinic.org/get-started-on-connect/

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Sometimes a spouse can never actually become a caregiver and take charge of the situation. Our family could never get my late husband diagnosed, so we could not direct any care for his disorders, and it almost drove some of us nuts. Going to court would have failed, we were told by the attorneys. So we lived with a belligerent, obstinate man who almost destroyed the family business due to lack of management. He thought it should run itself, I guess. He spent any money he could get his hands on for his own plans, We did not know where he was or what he was doing during some days when he was needed at the company for small errands he could have handled. He ate in restaurants more than once during the day and was addicted to eating. His lies became a constant effort to try to keep him in reality, and sometimes he spoke in a sane manner as if there were no deficits. Other days, it was awful to predict. I could not care for him because he did not allow any care. He said he was fine and I was the problem. He died in short order when his prostate cancer returned after insufficient treatment and a tumor wrapped around his spine and grew upward. So I was never a caregiver, just a praying person who stood by and watched the decline occur. No one would believe me, because sometimes he was rational. It was a huge funeral. I was married 50 years. I inherited a nice place to live but had no savings or plan for retirement. It took four years to work out the financial issues and then the recession hit us all. I survived that and now can live well with a large garden and some help from my family. But I was never able to be a care giver. A housekeeper, a cook, but not a caregiver.
I raised three wonderful children and five marvelous grandchildren. I am so blessed, but I still study dementia. Dorisena

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