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.

@IndianaScott

Hello @dorisena nice to e-meet you here on Mayo Connect.. I am sad to read about the challenges you faced with your husband's dementia. It must have made being his caregiver even more difficult.

I do not know of any documented connection between cancer and dementia, In my wife's case it was brain cancer and the fact the tumor destroyed her brain causing her dementia-like symptoms.

Likewise I have never seen anything linking diabetes with Alzheimer's disease, but I guess anything is possible. It seems to me, as a non-medical professional, that one being in the brain and the other being a failure of the pancreas, they wouldn't intersect.

What have you read and learned about this? I'm interested to know.

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@indiana Scott I believe that the drugs for diabetes can cause schizophrenia, so probably dementia also. (

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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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Thank you, Indiana Scott, for your thoughtful response. No he does not take meds, thinks there is nothing wrong. OTOH, there is no chance I can extricate myself from his care. As I said, another sibling thinks this is a religious duty (You are your brother's keeper). If I attempt to separate, she will take over everything and it will destroy her life. She admits that he "killed our mother," but "he couldn't help it." No one ever expected him to do anything or take responsibility. Now the problem is 40 years of enabling.

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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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@hoprful33250- Thank you, it's good to have some support for my thoughts. Everything is overshadowed by the mingling of theology into a practical matter. I am indeed a Christian, but I just think that enabling is not the best way to go.

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When you love a person, the term "enabling" is a difficult concept to understand. You want to help those you love. Supporting their bad habits that injure their health is not really being helpful because you are making excuses for not doing better in the end. I finally stopped enabling my husband and it didn't cause an improvement in his attitude, except he quit drinking for three months at my insistence, but then went back to it thinking that was long enough time to satisfy me. Moving to another bedroom was a good solution for me but then he would come in, wake me, and cause a tantrum about imagined problems. That's when I knew that dementia was happening. He actually liked having the bedroom to himself so he wouldn't have to address his snoring and breathing issues.
I thought he would die any day from his stopped breathing but he only fell out of bed one night and bruised his eye badly. I just learned to live through it all, and avoiding supporting his bad choices, until the end. There was nothing more I could do to help. He ended up in Hospice care for six weeks, never ate a bite, was paralyzed, and on a drug pump. I don't know what the answer is but I know you must understand what "enabling" entails. Dorisena

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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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Yes, I agree that I do not believe God is punishing or testing us, however sometimes harmful effects are the natural result of poor choices. On the matter of personal responsibility, I have opinions according to my abilities to serve and help, but I do not have the answers for those who find themselves financially or physically strapped into the responsibility of care for another family member.
I took it one day at a time and lived with the consequences, good or bad. I survived. I work on the guilt effect. I am doing well. Dorisena

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@jshdma

HELP !! I have a brother diagnosed with schizophrenia , in denial for 40 years now. He went through college, grad school, and law school; practiced law for 30 years. Lived in a pig-sty, lived off credit cards, didn't pay taxes. etc etc We have picked up the pieces endlessly, paid back taxes and credit cards. Now "retired," he is only getting worse. We support him, and in return he is abusive (verbally). Made himself diabetic through terrible eating habits. Now he is becoming physically impaired as well as mentally. We are now older and just can't take it anymore. Another close relative tells us that taking care of him beyond financially (no matter how bad it gets), is a "test from God." It seems to me that a man who has 3 advanced academic degrees and (however badly) practiced law for 30 years, has some responsibility for himself. Any opinions or suggestions will be welcome.

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Hi @jshdma – I agree with @IndianaScott and @hopeful33250 – I don't think God sends us those kind of tests. Your brother's situation sounds like one that you've dealt with for a very long time and it sounds as if it is deteriorating. I think Teresa's idea of contacting an attorney and a counselor is excellent. In addition to that, could you contact your local Council on Aging to see what other support services might be available – for him and for you?

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@jshdma

@hoprful33250- Thank you, it's good to have some support for my thoughts. Everything is overshadowed by the mingling of theology into a practical matter. I am indeed a Christian, but I just think that enabling is not the best way to go.

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@jshdma You are right in that "enabling is not the best way to go." Well said!

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@hopeful33250 Teresa, the links you provided are interesting. My acupuncturist just recently told me that he had seen some research indicating that a ketogenic diet could help delay decline in cognitive function and even restore some cognitive ability in Alzheimer patients. I thought that was very encouraging.

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@dorisena

When you love a person, the term "enabling" is a difficult concept to understand. You want to help those you love. Supporting their bad habits that injure their health is not really being helpful because you are making excuses for not doing better in the end. I finally stopped enabling my husband and it didn't cause an improvement in his attitude, except he quit drinking for three months at my insistence, but then went back to it thinking that was long enough time to satisfy me. Moving to another bedroom was a good solution for me but then he would come in, wake me, and cause a tantrum about imagined problems. That's when I knew that dementia was happening. He actually liked having the bedroom to himself so he wouldn't have to address his snoring and breathing issues.
I thought he would die any day from his stopped breathing but he only fell out of bed one night and bruised his eye badly. I just learned to live through it all, and avoiding supporting his bad choices, until the end. There was nothing more I could do to help. He ended up in Hospice care for six weeks, never ate a bite, was paralyzed, and on a drug pump. I don't know what the answer is but I know you must understand what "enabling" entails. Dorisena

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@dorisena I think enabling involves the risk of actually teaching someone that anything he does is OK, whether it hurts him or hurts another person. No caregiver or relative should encourage this kind of action, if at all possible.

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@debbraw

@hopeful33250 Teresa, the links you provided are interesting. My acupuncturist just recently told me that he had seen some research indicating that a ketogenic diet could help delay decline in cognitive function and even restore some cognitive ability in Alzheimer patients. I thought that was very encouraging.

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You know, @debbraw, I've heard many times that the kind of lifestyle that is good for the heart is also good for the brain. The gut-brain connection is probably stronger than we think.

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@debbraw

Hi @jshdma – I agree with @IndianaScott and @hopeful33250 – I don't think God sends us those kind of tests. Your brother's situation sounds like one that you've dealt with for a very long time and it sounds as if it is deteriorating. I think Teresa's idea of contacting an attorney and a counselor is excellent. In addition to that, could you contact your local Council on Aging to see what other support services might be available – for him and for you?

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@debbraw Good suggestions, which I would love to implement. Problem is–no family agreement. My sister will die for him, if that's what it comes to. If I drop out, that will happen. Indeed, there are support services, but my brother will not allow or accept anything. I used to go over and clean his apartment. Then he changed the locks and shut me out. So my sister is paying for maid service.

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i also was told by a specialist that what's good for your heart is good for your brain.

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@jshdma

@debbraw Good suggestions, which I would love to implement. Problem is–no family agreement. My sister will die for him, if that's what it comes to. If I drop out, that will happen. Indeed, there are support services, but my brother will not allow or accept anything. I used to go over and clean his apartment. Then he changed the locks and shut me out. So my sister is paying for maid service.

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Fine, debbraw. Let your sister pay for maid service. I doubt that your sister will actually die for him, but she can make a fool out of herself before she reaches a reasonable limit. I really understand the situation, as my sister-in-law enabled her brother who lived in a car with a dog and had her get his prescriptions for him. She finally got him some kind of assisted living until he died, but she kept his dog at her house for him. She already had a dog, in the house, of course. When your brother changed the locks, you were under no moral obligation to continue to be involved much. I reported a couple of relatives to the county health department because I knew they had programs to get involved and improve the lot of the people with dementia. One nurse went to court and got my aunt put in a nursing home because she was in bad shape and recognized no one. The nephew got access to the CD's and their savings disappeared, as well as a basement full of valuable antiques. That upset my sister, but I just laughed and was grateful the county took care of the couple.
Most of the time there is not family agreement to helping with care, so we do what we think is the right thing, including for us. My daughter, who manages my money and pays my bills, refused to allow me to contribute to my sister's benefit because my sister would have used it for her grandson who kept her in poverty most of the time. We must make decisions and not feel guilty. Dorisena

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@dorisena

Fine, debbraw. Let your sister pay for maid service. I doubt that your sister will actually die for him, but she can make a fool out of herself before she reaches a reasonable limit. I really understand the situation, as my sister-in-law enabled her brother who lived in a car with a dog and had her get his prescriptions for him. She finally got him some kind of assisted living until he died, but she kept his dog at her house for him. She already had a dog, in the house, of course. When your brother changed the locks, you were under no moral obligation to continue to be involved much. I reported a couple of relatives to the county health department because I knew they had programs to get involved and improve the lot of the people with dementia. One nurse went to court and got my aunt put in a nursing home because she was in bad shape and recognized no one. The nephew got access to the CD's and their savings disappeared, as well as a basement full of valuable antiques. That upset my sister, but I just laughed and was grateful the county took care of the couple.
Most of the time there is not family agreement to helping with care, so we do what we think is the right thing, including for us. My daughter, who manages my money and pays my bills, refused to allow me to contribute to my sister's benefit because my sister would have used it for her grandson who kept her in poverty most of the time. We must make decisions and not feel guilty. Dorisena

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My late husband's grandmother lived in filth and poor eating habits and neither my mother or I could get him to put her in a facility because he knew he was getting everything she had left. and has already received title to her property. My sister died in squalor too terrible to repeat here, but I never saw it and knew I couldn't get involved, so I stayed out of it. For that my sister-in-law and her daughter criticized me repeatedly for not "helping" the situation and I knew that couldn't happen. She was diagnosed with Schizophrenia and had a number of chronic illnesses. There were mice in the refrigerator, I was told. Her husband was her caregiver and the county got involved because the mice came through the ceiling, which needed to be ripped out and repaired. The daughters live out of state. They are alcoholics and the entire family has OCD problems of some kind. I do not know how the surviving husband lives. I am living with sadness but not guilt. Dorisena

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@dorisena

Fine, debbraw. Let your sister pay for maid service. I doubt that your sister will actually die for him, but she can make a fool out of herself before she reaches a reasonable limit. I really understand the situation, as my sister-in-law enabled her brother who lived in a car with a dog and had her get his prescriptions for him. She finally got him some kind of assisted living until he died, but she kept his dog at her house for him. She already had a dog, in the house, of course. When your brother changed the locks, you were under no moral obligation to continue to be involved much. I reported a couple of relatives to the county health department because I knew they had programs to get involved and improve the lot of the people with dementia. One nurse went to court and got my aunt put in a nursing home because she was in bad shape and recognized no one. The nephew got access to the CD's and their savings disappeared, as well as a basement full of valuable antiques. That upset my sister, but I just laughed and was grateful the county took care of the couple.
Most of the time there is not family agreement to helping with care, so we do what we think is the right thing, including for us. My daughter, who manages my money and pays my bills, refused to allow me to contribute to my sister's benefit because my sister would have used it for her grandson who kept her in poverty most of the time. We must make decisions and not feel guilty. Dorisena

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Thank you, Dorisena,. for your words of wisdom. As most people in these situations know, they give rise to a lot of guilt.

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