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.

@dorisena

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

Jump to this post

Thank you for sharing your story.

REPLY

I'm so glad you've joined this online support group. Even tho I go to monthly support groups in our town run by the country and one at the hospital facilitated by a social worker, it's nice to have someone to share insights with on a daily basis when needed.
My husband, 75, is probably in the middle of mid-stage ALZ and is still doing pretty well physically but has been unable to read or write for a few yearsbut recognizes me and our family and friends but can't remember our names and most objects. Speaking complete sentences is getting more difficult but he can stay alone for a couple hours at a time. I have great support from friends and family and am counting my blessings and trying to prepare for what I know lies ahead. Bless you all as you care for your loved ones the best way you know how.

REPLY

My past situation was different from most as my husband was difficult from the beginning of our marriage so he ran his own life whether or not we liked it.
We were never able to care for him, and he lived in denial of everything until he died of metatastic cancer of the spine, paralyzed, and not speaking to me.
I am willing to share my efforts on situations beyond anyone's control based on my years of study and making a supreme effort to survive the bad events.
I like sharing my ideas that worked to make some days better, and I recommend prayer and faith to feel the protection needed to keep my self respect.
I didn't want a divorce although it was recommended by an Alzheimer's professional, and no facility would have been able to hold him safely. I want others to learn earlier in life how to better prepare for our later years regardless of the mental health conditions that seem to decline as we age. There is no one way or normal policy for dealing with the problems that can arise. You are fortunate if your husband is cooperative in nature. That is a blessing. Dorisena

REPLY

Scott, for my personal education I am interested in learning more about the possible association of cancer with dementia, if it is being studied. I know that Diabetes is now being studied as a precursor or in association with Alzheimer's and some doctors refer to Alzheimer's as Diabetes III. There must be a connection as my husband had both Diabetes which he refused to treat, and prostate cancer, which he did not continue to treat, and ended up with a tumor wrapped around his spine which killed him. It is difficult to say when the dementia first surfaced because his personality was so obstinate and uncooperative.
I can say I lived through the whole 50-year experience and after 13 years still do not have the strength to write it all down for study. But I care so much.
Dorisena

REPLY
@dorisena

Scott, for my personal education I am interested in learning more about the possible association of cancer with dementia, if it is being studied. I know that Diabetes is now being studied as a precursor or in association with Alzheimer's and some doctors refer to Alzheimer's as Diabetes III. There must be a connection as my husband had both Diabetes which he refused to treat, and prostate cancer, which he did not continue to treat, and ended up with a tumor wrapped around his spine which killed him. It is difficult to say when the dementia first surfaced because his personality was so obstinate and uncooperative.
I can say I lived through the whole 50-year experience and after 13 years still do not have the strength to write it all down for study. But I care so much.
Dorisena

Jump to this post

I wonder if all the meds that many people take for their illnesses, including cancer and depression, are a large part of the reason for the dementia that develops.

REPLY

Perhaps when people decide to get married they should be reminded during any pre-marital counseliing that they might someday have to deal with the reality of "in sickness and in health". A marriage will have lots of challenges over the years, and especially as we age and get sick mentally, physically and financially. We need God's guidance, peace and comfort in this hard journey. And He uses each of us to support our friends along the way.

REPLY

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.

REPLY
@dorisena

Scott, for my personal education I am interested in learning more about the possible association of cancer with dementia, if it is being studied. I know that Diabetes is now being studied as a precursor or in association with Alzheimer's and some doctors refer to Alzheimer's as Diabetes III. There must be a connection as my husband had both Diabetes which he refused to treat, and prostate cancer, which he did not continue to treat, and ended up with a tumor wrapped around his spine which killed him. It is difficult to say when the dementia first surfaced because his personality was so obstinate and uncooperative.
I can say I lived through the whole 50-year experience and after 13 years still do not have the strength to write it all down for study. But I care so much.
Dorisena

Jump to this post

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.

REPLY
@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.

Jump to this post

Some doctors won't tell you that diabetes can cause other problems. It is associated with hearing loss, blindness, obesity, and, worst of all dementia. It can destroy the brain. It is linked to hoarding, loss of smell, and other peculiar behaviors. You can predict the disease in some people. Today doctors use a scale and measure people's waist for one sign. Responsibility is a good word to use in the conversation. I tried hard to not enable my late husband with his poor choices. learn what that word means in your life. Dorisena

REPLY
@leeandpat

I wonder if all the meds that many people take for their illnesses, including cancer and depression, are a large part of the reason for the dementia that develops.

Jump to this post

Hi @leeandpat Interesting idea. I can only say from my wife's experience that her dementia-like symptoms came from the cancer destroying her brain and not the many meds she was on — and she was on a bunch, but there was no mistaking the damage done to her was a result of the cancer's destructive properties.

On the other hand my MIL never took more than an aspirin and developed dementia.

Hopefully medical science will continue to work to find the reason or reasons behind this terrible disease.

REPLY
@leeandpat

I wonder if all the meds that many people take for their illnesses, including cancer and depression, are a large part of the reason for the dementia that develops.

Jump to this post

Cancer treatment meds kill bad cells but can also kill some good cells. Depression meds are not helpful for some people and are not the whole treatment for depression because they don't address the cause of depression. My doctor prescribes medicine which makes me so sleepy I can't function so I don't take it during the day. He says he has no other options. That leaves me on my own for treatment. Finding a doctor at my age is a problem in my area, so I am becoming my own doctor by reading and hoping for the best. I can get an orthopedic doctor for broken bones and for physical therapy. We can support each other. It is a journey to knowledge. Dorisena

REPLY
@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.

Jump to this post

Hello @jshdma That sound like a very difficult situation!

Only my opinion here, but I do not think God sends this kind of thing to anyone, nor does he test anyone in these ways. Little bothered me more than when someone would say to me, as I took care of my wife "god doesn't give you more than you can handle". First, that isn't the quote and second sometimes things ARE more than a person can handle.

If your brother has been in denial for 40 years, getting him to change his situation now seems highly unlikely to me.

Does he take his medications for his schizophernia? If so do they help?

REPLY
@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.

Jump to this post

Yes, I have read about the link between diabetes and Alzheimer's. I lived with my husband's mental decline, and I have mild diabetes which I can control with my diet, exercise, and a couple of pills. I can notice the mental decline when I eat the wrong food for me. I can observe the sleepiness in others when they eat too much sugar. My husband would sit down and fall asleep in the middle of a sentence.
Alcoholism added to the problem. There are a number of kinds of mental diseases. Alzheimer's is a word to cover many problems and is difficult to diagnose. It doesn't make much difference what you call it after it happens, and takes years to develop in some cases. We must remember that the brain is connected to all body functions and controls all physical actions, some in site specific places of the brain.
When you have physical damage from a stroke, the brain is damaged somewhere because it controls the physical function. This is much more complicated than you and I can imagine. Dorisena

REPLY
@IndianaScott

Hello @jshdma That sound like a very difficult situation!

Only my opinion here, but I do not think God sends this kind of thing to anyone, nor does he test anyone in these ways. Little bothered me more than when someone would say to me, as I took care of my wife "god doesn't give you more than you can handle". First, that isn't the quote and second sometimes things ARE more than a person can handle.

If your brother has been in denial for 40 years, getting him to change his situation now seems highly unlikely to me.

Does he take his medications for his schizophernia? If so do they help?

Jump to this post

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?

REPLY
@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.

Jump to this post

Hello @dorisena and @IndianaScott

I read with interests your posts about dementia and the idea of diabetes and Alzheimer's link. Since this sounded familiar, I did a little research. Here are a couple of websites which discuss this theory:

https://www.mayoclinic.org/diseases-conditions/type-2-diabetes/in-depth/diabetes-and-alzheimers/art-20046987
and
https://www.webmd.com/alzheimers/guide/alzheimers-diabetes-link

While there is a link, a good diet and exercise seem to be the key to preventing dementia in those with diabetes or a pre-diabetes diagnosis.

REPLY
Please login or register to post a reply.