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.

@dianajane

@debbrawdebbraw Looks interesting. We are in Michigan. I believe he has advanced from MCI to moderate to severe.

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Hi @dianejane, I'm not sure what criteria they use for HABIT, but I do think it might be worth checking with Mayo to see about eligibility or what other programs may be available. It may help you feel less like you are struggling alone. Like we were talking about earlier, the feelings of isolation can be overwhelming. I'm hoping all goes well with your communication issues and you stay on Connect!

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@IndianaScott

Hi @bfbflattenor Please let your granddaughter know I think her new word is wonderful! I’m also happy to hear you feel at home here! I am sorry to hear you’ve been unable to find anyone to talk to with a similar condition.

Can hou tell me what B-PLL stands for?

Strength, courage, and peace

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@IndianaScott Here is the discussion on B-cell prolymphocytic leukemia (B-PLL) that @bflattenor started in the Blood Cancers & Disorders group on Connect
https://connect.mayoclinic.org/discussion/b-pll/

Bflattenor, I edited the title of your discussion to included the full spelling of B-PLL. That may help more people find it.

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@cathyb

Hi minina.. I am new here and not sure you will get this but my husband was diagnosed with behavioral variant Frontal temporal dementia in 2013 and passed away in 2017. He was 63. I went through SO much partly because he was so young. I am writing this because you can make it through this awful decease. I mananaged to take care of myself and him as well caring for him at home until the last few months.

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Welcome @cathyb. I'm so pleased that you joined the discussion to help others. I think you might also enjoy reading and responding to some special discussions that Scott wrote. For example:
– May Thoughts from a Caregiver… https://connect.mayoclinic.org/discussion/may-thoughts-from-a-caregiver/
– Love and Caregiving… https://connect.mayoclinic.org/discussion/love-and-caregiving/
– Loss and Grief in Caregiving https://connect.mayoclinic.org/discussion/loss-and-grief-in-caregiving/

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@dianajane

@debbrawdebbraw Looks interesting. We are in Michigan. I believe he has advanced from MCI to moderate to severe.

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@dianajane I think you would enjoy following the Page on Connect called:
– Living with Mild Cognitive Impairment (MCI) https://connect.mayoclinic.org/page/living-with-mild-cognitive-impairment-mci/

The Directors and guest bloggers publish a weekly blog and there's also more information about the HABIT program at Mayo Clinic, etc.

FYI: The blog posts on the MCI post are likely of high interest to everyone in the discussion group. They're really good.

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@lindabf

I really get what that’s like! My husband seems to me to be displaying some very early symptoms of cognitive decline. He’s 74 and otherwise very healthy. For awhile I thought I’d just gotten very boring and bad at communication since we could discuss something one day and the next, he didn’t even remember we’d discussed it. Then I had one of those stomach-sinking “Aha’s” – that’s a dementia symptom. So far he can still drive, although on long trips, we take detours when he stops listening to the GPS because it confuses him. So far, no trouble getting around by himself in town, even if it takes a bit longer. He also still takes care of routine maintenance around the house. But odd things like suddenly he is incredibly frustrated by the remote control for the TV — and it’s the same frustration every day — apparently no learning is being retained. We recently joined some friends for a simple domino game and he just couldn’t get it — the rules were overwhelming and the patterns on the dominoes confusing. He had to stop and count them each time, despite the color-coding. This is a former executive with an MBA. He still maintains he is fine and it’s just normal senior moment stuff. He gave in and promised me he would ask his doctor about some testing, but I’m pretty sure that’s one of those conversations he won’t remember having. And despite the fact that he doesn’t want me to, I plan to call his doctor and at least share my observations and concerns. When we are with friends or family, the main thing we notice is that his contributions to the conversation are not of the same quality we have experienced in the past. He’s still enjoyable to be around for the most part (except when he is having one of his episodes of being aggressively frustrated by things he used to understand but now has trouble figuring out). I’m so glad we were able to get lots of wonderful traveling in before we became caretakers for Mom 7 years ago. Our hope was, after her eventual passing, we would enjoy the rest of our retirement together traveling and volunteering and such. It’s discouraging to consider the possibility that for me it will just be an extended gig of caregiving instead. But as I said, we had a good run and a good life and some great trips. No use fighting this hateful disease–but I am sure looking forward to the kind of progress with dementia treatment that we’ve seen with cancer in the past few years! Glad there’s a place to share about it with people who don’t pat your hand or roll their eyes, but actually share frustrations, ideas, and tips!

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I am in a similar situation with similar decline and my heart goes out to you. I feel like I am on a roller coaster ride going from acceptance back to denial, from strength to a complete loss of trust in my ability to help him, from happiness because of what we still have to deep sadness for what we have lost. There are protocols that promise complete reversal if you have lots of money and live an impossible lifestyle. Mostly I feel blessed to have been married to this man for 45 years now with all the ups and downs and will do my best, with lots of help, to make these years have meaning.

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@mongerj

I am in a similar situation with similar decline and my heart goes out to you. I feel like I am on a roller coaster ride going from acceptance back to denial, from strength to a complete loss of trust in my ability to help him, from happiness because of what we still have to deep sadness for what we have lost. There are protocols that promise complete reversal if you have lots of money and live an impossible lifestyle. Mostly I feel blessed to have been married to this man for 45 years now with all the ups and downs and will do my best, with lots of help, to make these years have meaning.

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Hello @mongerj I am sorry to read of what you are experiencing as a caregiver. I am Scott and I am glad to see you found Mayo Connect! This is a wonderful community of all kinds of individuals who have been thrust into the highly challenging role of caregiver, like yourself.

You write so well about the many emotional conflicts of caregiving for a loved one! As you describe, it is such a challening and demanding roller coaster to ride — and one that is especially difficult to ride alone.

I know in my wife's situation I often wished there was more that I could do for her! You mention 'protocols that promise complete reversal'. I haven't heard of these. Can you share what they are?

Strength, courage, and peace!

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Has anybody heard about the effects of pedaling (like a bicycle) on patients with Alzheimer"s? Someone sent me a video. I do not know if it is true or not; but they report outstanding results. I follow this group, but I am not a caregiver at this point. Loli

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@loli No have not. Would be interested in this.

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@dianajane

@loli No have not. Would be interested in this.

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I’m interested in the pedaling thing too.

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Hi All:

For those who are interested in Pedaling, I know that it is used a lot by Parkinson's patients with great results. Here is a Youtube video that explains it,

https://www.youtube.com/watch?v=xzjjSy-p5kI

As both Alzheimer's and Parkinson's involve the brain I can see why the pedaling program might work well for both disorders.

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I took a look on this subject and I could only find one NIH-NIA Clinical Trial on the subject of cycling and Alzheimer's Disease. It appears to have begun in 2014 and will end in 2019.

Here is the link: https://www.nia.nih.gov/alzheimers/clinical-trials/cycling-exercise-treating-alzheimers-disease

I know in my mother-in-law's case there is no way she could have balanced on a stationary bike unless it was greatly adapted. This study is of 90 people and undertaken by the University of Minnesota and University of St. Thomas, so it will be interesting to see what they discover.

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@kmkm

Hello- I don’t get out much and am looking for an online community of caregivers who are at home full-time caring for a parent with Alzheimers. I’d love to swap suggestions and ideas. Is there anyone out there? Thanks.

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Hello new here. I’m caring for my father stage 3 Dementia. My father is 90 I retired early 59 my husband is 69 we have no children but we live in a tri- level house. This is a big concern, I worry at night he might fall down the 7 steps. He has sun downing so he is up about 2 to3 times at night. He is also diabetic. I have been taking care of my dad for only 3 month going on 4 and aleady seems a life time. He also has conjested heart failure so he is on a limited liquid,low sodium and low sugar diet. Also has a diabetic ulcer on his big toe. He is now doing hyperbaric oxygen just had his 3rd treatment but it takes a 3+ hour chunk out of your day. Plus a little longer getting him dressed.
I make his meals from scratch/ very simple but I have lowered his sugar count and I no longer have to give him his shots. Which is great. I do have other siblings but they all work full time.
Yes I would love to talk to anyone else out there too.

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@tonialice

Hello new here. I’m caring for my father stage 3 Dementia. My father is 90 I retired early 59 my husband is 69 we have no children but we live in a tri- level house. This is a big concern, I worry at night he might fall down the 7 steps. He has sun downing so he is up about 2 to3 times at night. He is also diabetic. I have been taking care of my dad for only 3 month going on 4 and aleady seems a life time. He also has conjested heart failure so he is on a limited liquid,low sodium and low sugar diet. Also has a diabetic ulcer on his big toe. He is now doing hyperbaric oxygen just had his 3rd treatment but it takes a 3+ hour chunk out of your day. Plus a little longer getting him dressed.
I make his meals from scratch/ very simple but I have lowered his sugar count and I no longer have to give him his shots. Which is great. I do have other siblings but they all work full time.
Yes I would love to talk to anyone else out there too.

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Hello @tonialice While I am sorry to read of your father's journey with dementia, I am glad to e-meet you here and that you found Mayo Connect! Welcome to a wonderful community of caregivers! I am Scott and I was one of the caregivers for my mother-in-law while she had dementia as well as my wife, who had many dementia-like symptoms during her war with brain cancer.

I found Mayo Connect when I was years into caregiving for my wife and was having great challenges due to the isolation of intensive caregiving. It is an incredibly tough job and I wish you all the best in it!

it sounds like you are doing a terrific job for your father and his multiple needs! That is amazing what you have been able to accomplish with his diet and diabetes! Congratulations! I hope the sore on his toe heals. I had a really tough time with pressure sores on my wife's knees over the years.

In my mother-in-law's case we installed a dog gate across the couple of stairs that were a problem in her home. In our home for my wife I installed a more permanent babygate since it was at the top of a full flight of stairs. Then I put a small jingle bell on a thread on the gates so when they were touched I could hear a warning of sorts. It did help, plus with my MIL we were able to help her understand (at first when things weren't too advanced) that ringing the bell was something to avoid.and made it as a game. Not for everyone, but in her case it did help and just a suggestion.

I am not familiar with hyperbaric oxygen treatment. What does that involve?

Sending strengh, courage, and peace!

Liked by dianajane

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@tonialice

Hello new here. I’m caring for my father stage 3 Dementia. My father is 90 I retired early 59 my husband is 69 we have no children but we live in a tri- level house. This is a big concern, I worry at night he might fall down the 7 steps. He has sun downing so he is up about 2 to3 times at night. He is also diabetic. I have been taking care of my dad for only 3 month going on 4 and aleady seems a life time. He also has conjested heart failure so he is on a limited liquid,low sodium and low sugar diet. Also has a diabetic ulcer on his big toe. He is now doing hyperbaric oxygen just had his 3rd treatment but it takes a 3+ hour chunk out of your day. Plus a little longer getting him dressed.
I make his meals from scratch/ very simple but I have lowered his sugar count and I no longer have to give him his shots. Which is great. I do have other siblings but they all work full time.
Yes I would love to talk to anyone else out there too.

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@tonialice Good to see your post. Sorry to hear your story. What a great job you are doing. My husband has Primary Progressive Aphasia and Mild/moderate cognitive impairment which is getting worse. This is a super place to vent and share and get some inspiration through this long stressful journey. Make sure you are able to take care of yourself. God Bless. Dianajane

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@colleenyoung

@IndianaScott Here is the discussion on B-cell prolymphocytic leukemia (B-PLL) that @bflattenor started in the Blood Cancers & Disorders group on Connect
https://connect.mayoclinic.org/discussion/b-pll/

Bflattenor, I edited the title of your discussion to included the full spelling of B-PLL. That may help more people find it.

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Thank you,but the full name doesn't seem to be helping. I do believe there is no-one at Mayo Clinic who has had any experience with this type of leukemia—nor is there anyone at the Kaiser where I was being treated.I say was because I have taken myself off all prescription drugs. Who needs the side affects if they are not working?????

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