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.

@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I’m tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

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As a Carer, I find I have to make so many decisions in a new arena. It can be mentally exhausting trying to do that right thing, which can change from week to week or day to day. Sometimes my husband behaves like a child, his world has shrunk so much in his illness. I too believe in keeping it simple and sometimes having to steer things away from stress and or conflict. For me, it’s ok because I assess each thing individually and it’s an option to make decisions for my sick husband, that would otherwise bring heart ache. Most of all, I try to take care of myself, which I’m not good at but getting better. After 4 years, I’m finally starting to get my own medical check ups, I’m 61 and it’s taken 4 years to bring my own self care to light. Wishing you a peaceful day and time to take care of yourself too.

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@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I’m tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

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Hello @friendofmayo Nice to e-meet you here. I apologize for having missed your message. I am Scott and while i am not a medical professional at all, as I noted earlier my MIL had dementia, I also worked for the Alzheimer's Association for several years, and was the primary caregiver for my wife during her 14 year war with brain cancer during which she exhibited many dementia-like symptoms..

Denial is a very common challenge with dementia patients, sometimes their family members, and at times even members of their medial team. I believe when it comes to dementia it is extremely useful and important to remember the patient will not always be logical, able to follow logic, or respond/think/speak/react in the logical manner in which they did before their disease. This also changes over time and can be gradual or at times precipitous.

As much as we may want our dementia patients to act as they had in the past, the disease has taken that from them and they are now acting in new and different ways, which are not under their control, but under the control of this terrible disease.

In the case of the dementia patients I have worked with I often found trying to confront them or asking them to come face-to-face with the issues of dementia can make their anxiety over what they already (even if just in their hearts) know is changing and happening to them even worse. That said I also believe it is important for those who do accept and understand the diagnosis to take actions, if they still can, in getting their patient to sign the papers necessary for making the future easier for their care team and ultimately themselves. I was blessed my wife was able to accept my pleas to complete our wills and estate plans, fill out her living will, advance medical directives, HIPPA forms, and complete the process of getting her POA signed, notarized, etc.

In the case of my MIL, even after a diagnosis from the top Alzheimer's experts at Mayo Clinic, over 10 years of being bedridden by the disease, some family members still refuse to acknowledge she ever had it! Also as my MIL continued to decline and have more troubles (she thought the UPS driver was her husband and thought streets and sidewalks were reversed) my FIL continued to deny the situation. My wife finally left our home, traveled over 1,000 miles and told me "honey, you will see me back home when I finally convince my father to get live-in help." She called me daily to say 'yes' or 'no' and finally was successful after staying for over three weeks. I use this example just to show each person handles denial in their own unique manner. And these were the folks who did not have the disease!

I send you strength, courage, and peace!

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This is a great thread and one so many caregivers struggle with from time to time with almost any chronic disease, but especially with those who are on the journey though dementia.

One thing I always kept uppermost in my mind when working with my MIL and wife was the fact once an individual's brain is 'broken' by disease, the usual, logical steps one used to use in their relationship have very often changed due to the damage the disease wrecks. With dementia, logic cannot always be followed by the patient, nor is it successful with altering patterns now different due to physical changes in the brain and how the neuronal messages are being relayed. In my wife's situation I would often experience daily changes in this due to her disease.

I also came to learn, especially with my MIL, confrontation, anxiety, and often simple changes in environment caused significant downward falling off in her mental capacities. We all need to remember dementia is actually, physically altering the brain and therefore what may work in other instances and with other diseases may not work well at all, or be counterproductive with dementia patients. It is often not that they do not want to adjust, but simply that they cannot due to the progressions of the disease.

I frequently would remind myself in my case while married to one physical woman for 41 years, I was married to two. One woman pre-brain injury and a different one post-diagnosis. Same person, but two different people. This helped me manage the changes I would have to manage with her.

I send continued strength, courage, and peace

Liked by curlysunflowers

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@IndianaScott

This is a great thread and one so many caregivers struggle with from time to time with almost any chronic disease, but especially with those who are on the journey though dementia.

One thing I always kept uppermost in my mind when working with my MIL and wife was the fact once an individual's brain is 'broken' by disease, the usual, logical steps one used to use in their relationship have very often changed due to the damage the disease wrecks. With dementia, logic cannot always be followed by the patient, nor is it successful with altering patterns now different due to physical changes in the brain and how the neuronal messages are being relayed. In my wife's situation I would often experience daily changes in this due to her disease.

I also came to learn, especially with my MIL, confrontation, anxiety, and often simple changes in environment caused significant downward falling off in her mental capacities. We all need to remember dementia is actually, physically altering the brain and therefore what may work in other instances and with other diseases may not work well at all, or be counterproductive with dementia patients. It is often not that they do not want to adjust, but simply that they cannot due to the progressions of the disease.

I frequently would remind myself in my case while married to one physical woman for 41 years, I was married to two. One woman pre-brain injury and a different one post-diagnosis. Same person, but two different people. This helped me manage the changes I would have to manage with her.

I send continued strength, courage, and peace

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Thank you IndianaScott, it is a weird thing for caregivers because, especially at the beginning, we are confronted to this 2 persons at once, not knowing which one is listening in the actual moment . It varies during the day, even during a coversation. It is not one state and then the other, it is not even a linear progressive change. It comes and goes in different degrees at different moments in time. Thank you for your words of strength, courage and peace. They are a beacon, in themselves they are goals to walk to.

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@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I’m tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

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@juani softening what you say or not giving all the information isn't a lie. You have a good feeling for what your mom can and can not handle. The first five years when my mom asked about her Mom, my Nana, I learned to distract her. Her Mom passed 15 years before Mom's dementia started, but for her hearing her Mom was gone made it brand new. At some point that changed. Now if she asks me Nana is gone isn't she I say yes. We might talk about her or the fact that mom is now not only a Nana but a great Nana. I encourage you to go with your instincts. What do others think?

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@juani Well said!

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@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I’m tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

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I introduced myself a few months ago. My Mother was down to 80 pounds, refusing all food and at the age of 95 … the prognosis was pretty bleak. But as Yogi stated "It ain't over til it's over" … and now 16 months later, is up 22 pounds, playing computer games, exchanging barbs with health care personnel, and as forgetful as ever. Me, well – I'm holding in there, and still giving her special feeding infusions of antioxidants, polyphenols, and Omega-3 loaded nutrients, and keeping the mind active for at least 2 hours per day via cognitive therapy.

The hardest part of this whole ordeal has been dealing with the healthcare facility and in going over and beyond (for my Mom) what they have the capacity in doing for other dementia patients. It causes lots of friction, nothing too serious but it's something that I would have never thought about in a million years.

At any rate, I just completed a book on the experience and it's centered on feeding and more importantly how best to free the mind before offering food. The incentive of writing was that if the techniques worked for a written off 95 year old , then it may well help someone else in equal or lesser stages out as well. Anyone, I do not know the rules of this forum so, I will not post the title here … but if anyone is having difficulties in the feeding process – I would be glad to help out in any way possible!

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@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I’m tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

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I do not know the rules either; but I would love for you to post the title.

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Family caregivers are the backbone of American health care. They have become so common that family caregivers are almost overlooked. I wish strength and peace to all caregivers.

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@colleenyoung

@IndianaScott Thanks for starting this discussion on caring for someone who has dementia. I’m tagging fellow members to join us here too @tavi @lindabf @rozalia @sma1952 @clayton48 @19lin @caregiver49 @mmurray22dad @denver90 @nhunter121 @saltyfrog @coladyrev @shellsk24 @jhammer

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Hi @straight_shooter, thanks for asking beforehand. You can certainly post the title of your book. We have several writers and bloggers participating in the Connect community. As per the Terms of Use (https://connect.mayoclinic.org/terms-of-use/) and Community Guidelines (https://connect.mayoclinic.org/page/about-connect/tab/community-guidelines/) members cannot use the forum to commercialize or advertise for a business or personal profit, therefore it would be against the rules to sell your book via the forum.

The topic of feeding is multifaceted, especially for people with Alzheimer’s and at end of life. The needs and challenges are certainly different from person to person and from family to family.

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A Fantastic comment – I agree entirely – I am close to a family where the 90 year old mother is clearly defined as being in step 7 – the possible final step / and the brothers and sisters still debate instead of taking love and care as a remedie

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My husband is suffering with the loss of memory due to Alzheimer's about nine years. What is the definition of the steps referred to in your post mbabkk?

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Hi @virginiatc and @mbabkk I would be interested in the steps you refer to as well, mbabkk. I am not familiar with this idea and would like to learn about it.

Strength, courage, and peace to all caregivers!

Liked by virginiatc

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My heart goes out to you and your family. It is a difficult disease for all involved. I don't know what I'd do if Didn't have family & friend's support. I'd like to join the discussion. My husb has PPA Alzheimer's. Not caused by stroke.He hasn't been able to "find his words" since initial diagnosis. Won't try to speak. Very aware of his illness. Gets embarrassed.
Cannot write. I'm grieving a loss. Trying to take one day at a time. We both have good & bad days. I cherish days he feels good. Sorry to be ranting. Caregiving is PATIENCE. Looking forward to sharing my ideas and hearing others. Diana

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@dianajane

My heart goes out to you and your family. It is a difficult disease for all involved. I don't know what I'd do if Didn't have family & friend's support. I'd like to join the discussion. My husb has PPA Alzheimer's. Not caused by stroke.He hasn't been able to "find his words" since initial diagnosis. Won't try to speak. Very aware of his illness. Gets embarrassed.
Cannot write. I'm grieving a loss. Trying to take one day at a time. We both have good & bad days. I cherish days he feels good. Sorry to be ranting. Caregiving is PATIENCE. Looking forward to sharing my ideas and hearing others. Diana

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Hello @dianajane Nice to e-meet you here, Diana, in the Caregivers discussion group on Mayo Connect! I am sorry to read about your husband's diagnosis. I am Scott and I fully agree it is a very difficult disease. I have hard it called 'the long goodbye', which in my mother-in-law's case was certainly true.

One day at a time is the only way I knew how to make it while I was my wife's caregiver too. There was no other way to avoid the feelings of being overwhelmed with all the caregiving tasks, needs of my loved one, and the grief I was feeling all the time. It is also certainly a path of huge highs and lows. A crummy rollercoaster of the worst variety I believe!

I agree with you that caregiving takes huge amounts of patience! Often I found myself at my wits end and my patience shredded by those bad days you reference. All a caregiver can do is there best — as I often say 'Superman and Wonder Woman only exist in the comics. There are no Superheros in caregiving and we each need to remind ourselves of this from time to time!

The thing I love most about Connect is the ability to share and be listened to by a community of caring and concerned fellow caregivers! I look forward to hearing more of the ideas you want to share with us all — we can all use all the help we can get!

Strength, courage, and peace!

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