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.

@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 @talie Nice to e-meet you here! I am Scott and my MIL suffered from dementia. I also worked for the national Alzheimer’s Association for several years. I was a secondary caregiver for my MIL and for 14+ years the primary caregiver for my wife during her war with brain cancer. I am sorry to learn of your husband’s health condition. It is never an easy path for certain!

What you describe with your husband getting tired, etc. around that time of day is very common with dementia patients. It is a phenomenon often referred to as ‘sundowning’. This change also occurred with my MIL and was something that did not change in her.

Unfortunately, with many chronic diseases, as they progress they change our loved ones in ways that are both very different from their prior styles in life and just as often are uncomfortable for us as their loved one and caregiver. Personally I think this is especially true when these are changes, which outwardly manifest themselves, as sundowning does.

How each of us, as caregivers, manage these changes can be as unique as each of us are and as unique as each of our patients are.

I found that there is no ‘one size fits all’ answer for these situations, but one of the great things about Connect here is the fact so many others have been through something similar in our experiences and can share what we did or what we’ve learned!

In my case I learned the course of the disease was something I could not control, alter, or change no matter how much I wished I could. But I learned I could try and alter my actions/reactions around difficult changes sometimes.

When my wife had a period where her sleep pattern changed and was peculiar, I used that time to do something for myself, which I couldn’t do when she was awake and needing me. As odd as this may sound, I altered this change, which had been getting me down significantly, into a time when I could ‘reward’ myself with something for me — which in our schedule was a huge rarity.

Good to have you here and welcome to Connect! I hope you enjoy Connect as much as many of us do!

Strength, Courage, & Peace

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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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Talie, my husband, 87, also sleeps most of the time that I am visiting him in the Care Center. He will wake when I first arrive and maybe say a sentence or two but in 10 minutes or so he is dozing off again. This continues most of the afternoon as I try to spend the afternoon with him at least 3 days a week. I try to go on days when I know the activity in the Commons will be something he will enjoy and I encourage him to go. He will go and enjoy it if I’m there, but usually refuses if I am not there. Then, of course, as soon as we get back to the Memory unit he is really worn out and spends the rest of the afternoon sleeping. I always take a long something to occupy my time. I am a knitter and reader so it is not difficult to find something easy to take with me.

I know it is different when they are at home with you. We always kept soft music playing. Something that he liked. He was a polka fan, so he had CDs that would play for almost a hour, and we just played them over and over every day. It didn’t seem to matter to him that he heard the same ones. This seemed to calm him.

I think the extra sleeping is part of the advanced stage of the disease from articles I have read. Just try to find something that you can do and still be with him.
Stay with us. These people have so many good ideas, and always are encouraging.

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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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Thank you so much for your suggestion. It’s an excellent idea and I will definitely try it. I’m so happy I found this site and the knowledge that many people are struggling with similar issues. When I started writing last night, I was only planning to write a few sentences then found myself going on and on. Obviously, I needed to vent and it felt like a great release when I did. I was also comforted by the thought that the next day I might find some suggestions for my problem or at least some people who were experiencing the same issue–sometimes that feels just as good. Appreciatively, Talie

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I read your posts on this site often and always find them a great source of comfort and kindness even if the topic doesn’t apply to my exact situation. It appears like so many of us are struggling with one issue or another!

Talie

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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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My sister had the opposite problem with her late husband who had Alzheimer’s. He hardly ever slept & if he did he would sleep standing up against a wall for maybe 10-15 minutes at a time. Everyone is different & this is particularly true for Alzheimer’s depending on which areas of the brain are affected. Has he had any new meds? Does he sleep through the night or does he have sleep apnea? At this point he probably doesn’t follow the plots on TV. At least this was the case with my brother-in-law. I pray for all caretakers especially the loved ones of Alzheimer’s. God bless you talie.

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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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Thank you for your response.  My husband isn't taking any new meds but the neurologist did say that the medication he is taking could be part of the problem.  He sleeps (in bed) from probably 11p.m. until 6:00a.m.   He does have sleep apnea and wears the required headgear which seems to really help with the quality of sleep he gets.  I really do know what you mean when you say each case takes its own course.  When something changes, I wonder if this is going to be the new normal or will we go back to the way it was before.  This is probably my denial and/or wishful thinking.

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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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Don’t be too hard on yourself, @talie Denial, wishful thinking, or just coping. It makes no real difference. It is just how we get along each day of the ‘one-foot-in-front-of-the-other’ journey that is caregiving. There are many days when I put plodded along not having any notion of where the path we were on was leading or where it would end.

When it came to my wife I hung on each and every change! Large or tiny. Always wondering, analyzing, etc. to see if I could discern whether it was a forever change or not. In her case there was never any turning back in the sense that we never saw her ‘old normal’ again, we just had to move on to whatever ‘new normal’ was thrown our way,

I wish you continued strength, courage, & peace!

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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 could relate to your post of not knowing if this is the new normal. It is confusing for me, and as I try to problem solve , I get so tired mentally . And sad. Then I struggle to get back to my centre. My counsler is currently stressing the important of breaks and respite. I have one now for 3 days in my own home. It’s hard to enjoy because of the exhaustion and sadness I’m trying to shake off, I’m sure some writing and a good movie to cry with will help unload as well as a walk. Well, I’ve just created my 3 priorities for today’s precious day of respite. I hope a day of peace for you and good self care

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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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Thank you for your words, they really help me too. How fragile life seems at times. The fleeting moments of joy and happy, which I and I believe , many of us crave, do lie around us, it’s just getting that perspective aligned with self care. Truly spiritualilty at a black belt level. Gentle smile.

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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 My name is Candace and my Mom is 98 and in assisted living. I have trouble with the repeating and obsession with time and dates. Tried lots of tricks in hopes they will help but nothing. I get phone calls starting by 8am each morning and several more during the day wondering if the aides will come and get her for meals and bring her back. My sister and I take turns to visit her everyday so it isn’t like she has no company. I get so frustrated and just wish someone could give me some pointers on how deal with all of this. Mom is in good physical health and does not look 98! Thanks for any advice!

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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 Candace: Yes it is frustrating to repeat and repeat each day what you said not more then 30 seconds ago. Memory is so personalized and each person has an obsession. My husband wants to be sure he knows all the channels he can get on T. V. This goes on and on and so I have written all of his favorites, but even then there are other things he just does not understand. It is getting very difficult to
have a conversation. If there is one thing to be learned, that is patience. You can get some advice from this site and hopefully someone
to talk to that is experiencing the same events as you. Good luck. Ozy

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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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Thank you! I know patience is the key, will keep working on that.

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