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.

@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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@kmkm I, too, am caring for my mom in the late middle/early late stages of Alzheimer’s. She lives with us; me, my husband, our recently college graduated daughter. It sounds like we have a few things in common! Some days we cry and some days we giggle because if we don’t giggle, we will cry. Even though Mom’s memory is fading and she doesn’t always know me (usually she thinks I am her oldest sister), she still maintains a large part of her personality which encourages my heart. My mom has been bedridden since January because her legs just gave out on her. She began to be unsettled on her feet and couldn’t walk straight. It wasn’t long after that when her legs just became like cement. We all hate it for her; however, the silver lining in the cloud is that she can’t wander away from the house. I’d love to hear more about your journey with your Mom. I will be thinking of you and praying.

Liked by KMKM, mbabkk

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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 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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@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 @lindabf Nice to e-meet you. No eye rolling here in this group and pats are only ‘atta-girl!’ (or boy) on the shoulder in support!

I was my wife’s primary caregiver for 14 years as she battled brain cancer and suffered from many of the symptoms of dementia. She passed at 63 in July. She and I were also secondary caregivers for her mom when she had dementia.

The line separating ability and inability, as it changes almost daily with our loved ones is one of the supreme challenges in caregiving I agree. Being supportive, gently encouraging, but willing to acknowledge the line in the sand when it is arrived at can be a ‘Mission Impossible’ at times. Frustrating, saddening, and angering…each of which we, caregivers, force ourselves to mask as much as possible.

I send you strength, peace, and continued courage!

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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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@lindabf My experiences are similar to yours and I remember our family trying to figure out if it was normal memory issues or something more severe; so frustrating and unsettling, not to mention overwhelming.

Liked by lindabf, mbabkk

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@tsoy

Hey There,

I just joined, I care for my soon to be 94 year old Mother with dementia, I’d say late stage at this point. Since ideas and plans you put into action today may not work tomorrow, I think a site/group like this can be helpful to share ideas and methods of coping with issues. That is why I joined. I know I wish I had been more clever sooner, you can’t think of everything, so ideas will work for one person and not for another. For intendance, over a year ago my Mother got up during the night and opened the front door, the next day I installed a dead bolt with a key on each side. She was having trouble finding her bathroom at night, which was literally 10 steps from her bed, so I installed a string of those tube lights on the bathroom wall leading to the toilet. Now we are using doggie poop bags for Mom’s soiled briefs, it really controls to odder. Wish I had thought of that one months ago! Anyway I’m looking forward to getting more, better ideas for copping here.

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I also have resorted to Babywipes as they are less expensive and can be purchased in larger quanities. They help keep the skin from getting so dry.

Liked by mbabkk, evorie

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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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I was wondering if you know what caused your mother to stop being able to walk. DId she forget how to walk or does brain damage cause a loss of signal to her legs or ??????? Also, was wondering how one knows that dementia is actually caused by AD. Thank you

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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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@lindabf I went through almost exactly what you are observing for about 3 years and finally decided to mention some of my concerns to my husband’s doctor. My husband was willing to take the testing when suggested by his doctor. He would never have consented to it if I had surged it. The same with giving up driving. My children and I were concerned about how we could convince him to stop driving although he only drove around locally where he was familiar with roads, etc., but when his doctor said he really shouldn’t be driving and visited with him a bit, he hasn’t even suggested driving since. He still has his driver’s license, but I don’t think he will be renewing it as it will require Dr’s permit and probably a driving test which he could not pass. We’ll deal with that when the time comes nearer his birthday.
One day at a time.

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My husband also has difficulty walking, but his is attributed to the silent strokes he has suffered rather than alz.

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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 @rmftucker You bring up an interesting point, which I observed with my wife as well. I could suggest something till I was blue in the face and she would at best bristle and pitch a fight over it, or more often just reject it out of hand. Not so if the word came from her chief doctor. His word was gold to her and if he said A, B, or C, so it was! His word was also what ended my wife’s driving. After he said ‘no more’ she never ever brought it up and I know it was a huge blow to her at the time.

Amazing similarities….

Strength and peace,

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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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@caregiver49

Caused by AD? Do you mean Attention Deficeit Disorder?

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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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@macbeth, I took it that it stands for Alzheimer’s Disease.

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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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@nanax2

Thank you. I think I was just confused by the last sentence in caregiver49’s comment. Maybe I read it too fast, or maybe I am just tired. It seems as though we’re all soooo tired.

Liked by nanax2

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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, nanax2. Thank you for your prayers. I will also try to remember to pray for you and the others here who need strength and wisdom in the midst of difficult circumstances. A little about my journey with my mom: I am her only child (and she has no husband) so there’s no other family support (except 2 sisters who live across the country and visit once a year.) My mom is 74 and started showing (or I started noticing) symptoms of AD about 9 years ago. She has lived with us for 8 years and has taken 2 different Alz. meds for about 6 years. Two years ago she took part in a clinical trial of an experimental med., which seemed to help a little, but as soon as she discontinued it, we noticed some decline. Her short-term memory is increasingly poor and most long-term memories are completely gone (although she surprises us once in a while!) Although she interacts happily with loved-ones, she doesn’t remember significant shared experiences. Her physical health is good and she moves about the house without any help. One of her symptoms is OCD, which manifests in her taking bits of paper towels and wiping spots on counters (among several other non-destructive but annoying behaviors) —which drives some in my family crazy. She has never really exercised, and I have a hard time convincing her to walk outdoors since she doesn’t like to walk outside if the temp. is less than 74 degrees, or more than 78 degrees. However, my mom is generally good natured (with an occasional childish outburst: “You’re not my mother!” My struggles are classic: some mild depression, impatience, grief, loneliness, and sometimes anger. I have high expectations of myself and tend to compare myself with what a loving, caregiver-daughter “should be.” My husband and family struggle too, but they realize I carry the heaviest weight and they try to give me breaks once in awhile. I am most content when pressing into Jesus, my Rock, and when I am grateful for all that I’ve been given. I know it will be a long journey and I’m praying for the love, the strength, and the joy that I’ll need to finish well. Thanks for asking.

P.S. I have been greatly helped by reading the posts on the “Alzheimers Reading Room” : http://www.alzheimersreadingroom.com/

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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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@kmkm

I can relate to most of your post. My husband, who is 72, has dementia. I started noticing changes in his early mid sixties, but he was not diagnosed until four years ago. I see similar symptoms in him to what you see in your mother, and I feel the same desire to be the best caretaker and best example I can be. Younger people see us, and I feel it is so important to be a good example to them, so that, when they care for a loved one, they may have learned, from us, how to handle their loved one gently and with respect. I think the most difficult part of this journey is that it can be so long, and so draining. I have no help. The kids live in different states and visit only once every year or two. His surviving siblings are unable to help. My siblings are older than either of us, and have health problems of their own. Our friends seem not to notice that we’re no longer out and about much. I think that’s the other very difficult part of all of this. Yet, I try to keep a positive attitude and feel thankful for the easier, better days.

Wishing you, and all of us, strength for the journey.

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Every time my husband goes to any Dr. he has what they call a panic attack. He has them many times when we go to supper. He has had some at other times. He starts by turning very pale, sweats until his shirt is wet and then becomes sick to his stomach. Marcel has Alzheimer’s. We live in an extended care facility which is just great. We both enjoy it. He begins to feel better when he gets back to his recliner and goes to sleep. He is getting so that he doesn’t want to leave the apartment or his recliner. When he has one he doesn’t totally recover. I am so worried about him. I thought that surely there would be something he could have for anxiety but his Dr says no. Has anyone had any experience with this? If so I would appreciate hearing about it. Phyllis

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