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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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!

@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

@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.

@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!

@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

@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.

My mother’s dementia was caused by a series of mini strokes. As her mind failed, I realized that disagreeing with her was a waste of time. Disagreements just make things worse. Visual clues are helpful. If a loved one is wandering, a stop sign on a door may prevent her or him from wandering. Offering a loved one a cold drink can be helpful too. I think my mother was dehydrated because she always drank the water or juice I gave her, and drank it quickly. Toward the end of her life, I said “I love you” a lot. This calmed my mother until she reached the final stage of dementia.

Liked by juani

@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 Terry (@madtrav), We haven’t heard from you for a while, so I thought I’d check in. How are you doing? How’s your mom?

@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 decided I needed to be closer to my daughter and her family. I also decided to stop being a caregiver and just be a daughter to my parents. 

Sent from Yahoo Mail on Android

Hello. I wanted to give an update on our family. My husband and I are now officially “empty nesters”–with the exception of my mom who lives with us in our smallish 3 bedroom home. This new season has been especially difficult for my husband to adjust to. I know he is grieving, not only the loss of having children in the home, but the loss of not being able to enjoy time alone after work, having dinner together, enjoying conversation without my mom’s child-like interruptions, questions and almost constant need for direction…

Mom’s physical health is mostly good. Her most obvious physical side effect from her Alz. meds (not sure if it’s from Namenda (Memantine) or Aricept (Donepezil)–she takes both) is an almost constant runny nose. Her memory continues to decline, i.e. needs me to help her dress appropriately, brush her teeth, and to be directed where her room, clothes, trash can, bathroom, refrigerator are…She frequently asks “What should I be doing now?”

We made it through the summer with the highlight of my mom being able to participate (all afternoon and into the night!) at our daughter’s outdoor wedding (she even danced!) I can’t express my thanks enough for 2 friends that I invited to the wedding to be my mom’s constant companions, and for 2 other friends that made themselves available to be on-call to come pick up and be with my mom at home if needed. I thank God for a community of friends that care. It just took an unusual amount of mental/emotional effort on my part to plan and then ask others to help us in our time of need.

I am very thankful that mom is still sleeping well and is still continent (with the exception of a few days where she couldn’t make it to the toilet in time and I took the initiative to ask her physician to culture her urine–and found she had a UTI.) I suggest everyone get a plastic “hat” that fits underneath the lid of the toilet in order to collect a urine or stool sample (have you ever tried to collect another woman’s urine in one of those little specimen cups!!?? (Ask for the “hat” at the lab where you submit the specimen.)

Good news: We got a Disabled Person placard for our car. (I requested online, received, then filled out the proper DMV paperwork and mailed it to mom’s primary care doctor to fill out. They mailed it back to me, then we took the paperwork to the DMV…the whole process took over a month. We also took the opportunity to get my mom a “Senior ID” since she no longer has a valid driver’s license.) Even though mom is physically capable of walking up to a few blocks, I realized how much I have limited our activity because of parking difficulties–mom gets becomes easily agitated by wind, heat, sudden noises and other sensory input and becomes easily upset and wants to go home. I hope having the Disabled Person placard will encourage me to take the time to go more places with her (I find myself not wanting to make the effort because of all the times we’ve gone somewhere and then she decides she wants to go home (exceptions are going to Costco, the 99cent Store, and getting a fudge sundae at McDonald’s drive-thru 🙂

I’m sure the placard will become more useful as her physical abilities decline (although I’ve been surprised by how often there are no available handicap parking spaces when we go somewhere—an indication of the increasing “greying of America?”

I guess that’s enough for now, except my wanting ideas for what to do with my mom when we’re home all day…she seems restless and bored:

She has/had no other regular hobbies other than reading..
She watches t.v. and reads for a limited amount of time but then gets distracted and walks away….
She tries to help in the kitchen or do other chores, but then gives up because she can’t complete a task.
Most puzzles and games are impossible.
She doesn’t like being outside or exerting herself in almost any way.
She helps fold towels but ends up finding a scissor and “cuts” all the loose threads (I give her old rags to fold instead, but that gives her minimal pleasure.)
One recent activity I discovered was to take a deck of cards and put one card from each of the 4 suits on a table. I then asked her to make 4 piles with the remaining cards (separated into their appropriate suits.) I asked her to do this in order for me “make sure we have all 52 cards in the deck”.

Any other ideas? What do you do all day with your (physically-capable) loved one? Thanks!

@kmkm

Hello. I wanted to give an update on our family. My husband and I are now officially “empty nesters”–with the exception of my mom who lives with us in our smallish 3 bedroom home. This new season has been especially difficult for my husband to adjust to. I know he is grieving, not only the loss of having children in the home, but the loss of not being able to enjoy time alone after work, having dinner together, enjoying conversation without my mom’s child-like interruptions, questions and almost constant need for direction…

Mom’s physical health is mostly good. Her most obvious physical side effect from her Alz. meds (not sure if it’s from Namenda (Memantine) or Aricept (Donepezil)–she takes both) is an almost constant runny nose. Her memory continues to decline, i.e. needs me to help her dress appropriately, brush her teeth, and to be directed where her room, clothes, trash can, bathroom, refrigerator are…She frequently asks “What should I be doing now?”

We made it through the summer with the highlight of my mom being able to participate (all afternoon and into the night!) at our daughter’s outdoor wedding (she even danced!) I can’t express my thanks enough for 2 friends that I invited to the wedding to be my mom’s constant companions, and for 2 other friends that made themselves available to be on-call to come pick up and be with my mom at home if needed. I thank God for a community of friends that care. It just took an unusual amount of mental/emotional effort on my part to plan and then ask others to help us in our time of need.

I am very thankful that mom is still sleeping well and is still continent (with the exception of a few days where she couldn’t make it to the toilet in time and I took the initiative to ask her physician to culture her urine–and found she had a UTI.) I suggest everyone get a plastic “hat” that fits underneath the lid of the toilet in order to collect a urine or stool sample (have you ever tried to collect another woman’s urine in one of those little specimen cups!!?? (Ask for the “hat” at the lab where you submit the specimen.)

Good news: We got a Disabled Person placard for our car. (I requested online, received, then filled out the proper DMV paperwork and mailed it to mom’s primary care doctor to fill out. They mailed it back to me, then we took the paperwork to the DMV…the whole process took over a month. We also took the opportunity to get my mom a “Senior ID” since she no longer has a valid driver’s license.) Even though mom is physically capable of walking up to a few blocks, I realized how much I have limited our activity because of parking difficulties–mom gets becomes easily agitated by wind, heat, sudden noises and other sensory input and becomes easily upset and wants to go home. I hope having the Disabled Person placard will encourage me to take the time to go more places with her (I find myself not wanting to make the effort because of all the times we’ve gone somewhere and then she decides she wants to go home (exceptions are going to Costco, the 99cent Store, and getting a fudge sundae at McDonald’s drive-thru 🙂

I’m sure the placard will become more useful as her physical abilities decline (although I’ve been surprised by how often there are no available handicap parking spaces when we go somewhere—an indication of the increasing “greying of America?”

I guess that’s enough for now, except my wanting ideas for what to do with my mom when we’re home all day…she seems restless and bored:

She has/had no other regular hobbies other than reading..
She watches t.v. and reads for a limited amount of time but then gets distracted and walks away….
She tries to help in the kitchen or do other chores, but then gives up because she can’t complete a task.
Most puzzles and games are impossible.
She doesn’t like being outside or exerting herself in almost any way.
She helps fold towels but ends up finding a scissor and “cuts” all the loose threads (I give her old rags to fold instead, but that gives her minimal pleasure.)
One recent activity I discovered was to take a deck of cards and put one card from each of the 4 suits on a table. I then asked her to make 4 piles with the remaining cards (separated into their appropriate suits.) I asked her to do this in order for me “make sure we have all 52 cards in the deck”.

Any other ideas? What do you do all day with your (physically-capable) loved one? Thanks!

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KMKM, So nice to get such a detailed update. What a blessing for your daughter’s wedding. Thank goodness for such a helpful community of people to help with your mom so that you could the mother of the bride.

I have a couple of ideas for activities for your mom. Keep in mind this is just a brainstorm, not tried and tested ideas. It seems like she likes to organize. She might catch on that things like organizing the cards is a make work project. Perhaps you can gather a bunch of new “organizing” tasks to rotate through. Here are some things that came to mind:

– Sorting the utensils from the dishwasher into the utensil tray (providing the tray or drawer is removable to do at a table if she can’t do it from the dishwasher
– Cutting 8×11 size scrap paper into strips to make a notepad for grocery lists
– sorting miscellaneous objects of a “junk” drawer or cupboard (doesn’t everyone have a drawer like that 😉
– matching socks from the drying

Maybe that’s a few things to get the ideas flowing. Who has some ideas to add?

Colleen, thank you for your reply and encouragement. I like all your ideas! I have tried the organizing utensils and matching socks ideas before. What tends to happen is that she gets discouraged and gives up, or gets easily distracted, then walks away and forgets what she was doing. Part of the issue may be that there are too many objects to organize–I should give her smaller amounts to work with. My issue is mainly feeling discouraged and resentful that I have to constantly find ways to keep my mom busy. It reminds me so much of having to parent a 2 or 3 yr. old….but it was more fun when I was parenting my children; and it’s not fun at all parenting my mom….I know my attitude has so much to do with how we will get through this. Thanks for having this space for me to learn..and vent.

Hi kmkm, I care for my sister who is older than I. Here’s some ideas that work for her:treat her like a guest (come on in here and have a seat. Would you like a cup of tea)

Invite her to do what you are doing. ( let’s go water the porch plants. Help me here, I’m folding laundry. Let’s stop and take a rest and watch …… on Recorded TV) She always accepts the invite but doesn’t always get there in time to do the task bc it takes her a while or she forgets what we will be doing and just watches me.

It keeps her moving throughout the day. Often she will name household chores to do that I don’t want to do so I say I just did that a couple days ago but please help me get this stuff out for recycle. (That one she turns away from, smile).

It turns into a game for me. We do have a small house which helps a lot. My husband can calm her down with 3rd class mail to look through. He’ll say just make a pile of what you’re finished with. She looks through catalogues and AARP publications and sometimes makes a pile (wink). She fills in the squares of Sudoku puzzles with random numbers.

Everyone is different so you have to find what clicks in your Mom’s brain. My tasks might not work for you. One other thing is that I stay away from anything where I could get frustrated… like having help me make a bed ….disaster. Remembering you.

Has anyone in this grouped experienced a family member having vascular dementia?

@ksdrwelch

Has anyone in this grouped experienced a family member having vascular dementia?

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Hello @ksdrwelch I am Scott and while my wife did not have diagnosed vascular dementia, she had many of the symptoms of it due to her brain tumor.

It is good to see you found Connect and I am willing to be you will be able to find support and suggestions here. It is a great community!

I was my wife’s primary caregiver for her during her 14+ year war. Do you have any specific questions you are seeking answers on?

Strength, courage, and peace

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