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Caring for someone with dementia / Alzheimer's

Posted by @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.

REPLY

@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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Great question @tsoy. Getting pointers from the community will be helpful to many. I started a new discussion to gather ideas. See the discussion
– “Your caregiving tips & “How to” video demos for caregiving at home” http://mayocl.in/2d5JBaj

Let’s gather our caregiver tips on this Connect discussion: http://mayocl.in/2d5JBaj

Liked by foxylady42, KMKM

@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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@tsoy, when it started to get hard for Mom to get to the bathroom in time, we began using a commode and kept it in her bedroom. She didn’t like it but it did beat the alternative of not making it to the bathroom. We used this method for a few months until it became impossible for me to even move her from her bed to the commode. We began using briefs and bed pads and through the long process of trial and error, we found that TEVA products work the best. We use a brief and a pad each time she is changed. This was not an easy transition (emotionally) for either one of us but we made the best of it. TEVA products are the very best and nothing else I’ve tried compares. Mom was a hospice patient for six months and “graduated”. During this time, we were able to get her a hospital bed (Medicare covered) with a wonderful air mattress that keeps the air flowing so she doesn’t get bed sores. When she graduated from hospice, we used some of Mom’s money to buy the hospital bed, air mattress, and beside table at a discounted price.

During Mom’s time under hospice care, I learned how to change Mom’s brief and bedding without moving her out of the bed. Brief changing: have your loved one lie on their back with their legs bent, undo the tabs on the brief and roll up one side of the tab and place it under the middle of their back, roll the patient on their side, clean them and then remove the brief. While the patient is still on their back, slide a new brief (with a pad inside) under them a bit, roll them on their back and adjust as needed.

I hope that answers your questions. If not, let me know and I’ll answer what I can.

Liked by macbeth

@caregiver49

Fibbing can be helpful depending on stage. EXample; Your car is in the shop. The people in the house are helping me prepare it to paint, carpet. Etc…..you might have a friend that needs to stay with you until repairs are made on her flooded house and she is repaying you and your loved ones generosity by helping around the house. And you will be glad when she can go back home too. But now she needs our help. There is no end to helpful fibbing even though it might be only useful short term, even moments. When wanting to eat too often you might try dinner is in the oven, or you are waiting for the pizza man to deliver. My mom would brush cob webs from the house if I began to and asked her to take over for me while I had to tend to something else. Raking leaves is harmless too if secure from street. She would sometimes stay busy with it for awhile, giving her a bit of exercise. Music on a radio while outside may help them feel more connected to surroundings. When possible pick up lunch to go and save to heat up for dinner as lunch is much cheaper.Pastas, Thai, Chinese food reheat well. This will take some pressure off of caregiver and give some variety to all. I always agree and never say don’t you remember? I’ll see what I can do might interrupt the thought they are stuck on. This is a long, slow slog with few signposts. What works today probably won’t work long.
Aside from this I just learned that depending on what state you live in, should you reach a point you need to have loved one move to care facility although after spending down to qualify the gov can recover what it spent on their care from estate after death. This started in 2009 I believe and is a change from how it used to be handled. Hope this helps@@

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Lying or fibbing to anyone can have its consequences. In my family experience lying is an easy out than dealing with the negative of telling the truth. But it has its down sides. Eventually for what ever reason my family lied to me, I always found the truth and that made me madder than if they bothered to tell the truth. As a child my parents excuse was it was for my own good. But as I got older the lying did not stop. It just became the easy way out. Even when I call out on knowing that they lied. They seemed not to either care or understand the consequences that lying on our family relationship. Even as a counselor when working with clients and their family I stress that lying will bite them in the butt one day, I believe that one should tell a loved one the truth. It might need some creativity and thoughtfulness but for you and others involved it would be emotionally satisfying. You can now rationalize about the lying but to you and others involved it will have an impact . With parents or loved ones that are losing their memories and get upset easily lying maybe the easiest solution for you but again it will impact your relationship with other family members, relatives, friends and yourself. If you need to discuss other concerns and would like to run it through this group please do. Your health is a concern for all of us on this connect network of concerned people

@macbeth

@tsoy

Thank you for your information. When the time comes to get someone to help at home, such as a paid caregiver, to enable the main caregiver to run errands, keep appointments, etc., how do you find someone for that service? We live outside of a small town. Is there some sort of agency? Is there a choice? What if the person you get is not a good match – for instance, if there are trust issues or if your vulnerable adult finds the substitute caregiver irritating?

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Can you go to your nearest hospital and ask for a list of caregivers for your husband? Or any agency that deals with seniors. You should not have to go to unreliable resources and eventually let you down

Liked by ladycat

@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 am new to this site and after reading your post, knew I found the right place to vent and share.

@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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Welcome to Connect @foxylady42. Please tell us a bit about you and your caregiving situation. We look forward to getting to know you.

@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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Hey @IndianaScott, I’m all about learning how to deal with situations BEFORE I need the knowledge! Any pointers you might pass along would be greatly appreciated. I just don’t know if I will be able to handle Mom if she gets to the point of not being able to walk at all. She will soon be 94, and with the dementia she does not respond to any requests or demands…she does not help at all any more with getting into/out of bed or chairs or toilet. If she gets to the point of needing 2 people to handle those things, I may need to quit working. We will not be able to afford 2 paid care givers.

Thanks,

@caregiver49

Fibbing can be helpful depending on stage. EXample; Your car is in the shop. The people in the house are helping me prepare it to paint, carpet. Etc…..you might have a friend that needs to stay with you until repairs are made on her flooded house and she is repaying you and your loved ones generosity by helping around the house. And you will be glad when she can go back home too. But now she needs our help. There is no end to helpful fibbing even though it might be only useful short term, even moments. When wanting to eat too often you might try dinner is in the oven, or you are waiting for the pizza man to deliver. My mom would brush cob webs from the house if I began to and asked her to take over for me while I had to tend to something else. Raking leaves is harmless too if secure from street. She would sometimes stay busy with it for awhile, giving her a bit of exercise. Music on a radio while outside may help them feel more connected to surroundings. When possible pick up lunch to go and save to heat up for dinner as lunch is much cheaper.Pastas, Thai, Chinese food reheat well. This will take some pressure off of caregiver and give some variety to all. I always agree and never say don’t you remember? I’ll see what I can do might interrupt the thought they are stuck on. This is a long, slow slog with few signposts. What works today probably won’t work long.
Aside from this I just learned that depending on what state you live in, should you reach a point you need to have loved one move to care facility although after spending down to qualify the gov can recover what it spent on their care from estate after death. This started in 2009 I believe and is a change from how it used to be handled. Hope this helps@@

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@safetyshield I agree. Lying just leads to some really tough situations, especially in caregiving. I always made sure I told the truth. I may not have gone into all the tiniest of details, but I never wanted anyone to come back and accuse me of not sharing. Plus there was always a huge amount of sharing of what I said to anyone between folks so they ‘compared notes’ on me constantly.

When it came to my wife we made a pact very early in her journey she could always count on me to tell her the truth. It eased her worry a bit.

And on an unrelated, but related note, coming from a very dysfunctional, alcoholic family communicating was not always my powerful suit — but I sure did realize lying just screwed up all communicating to the point of damaging yourself and others.

Peace and strength,

Liked by safetyshield

@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.

Jump to this post

Hi @tsoy. For quite a long time I was able to do 1-person transfers even when my wife was unable to assist in much of any manner. In our case a bear hug and transfer worked for quite awhile.

I worked hard to get her to agree to let me do a transfer — only 1 a day — before she needed it so she knew what was going to be coming later. It seemed to help especially in those early days of 1-person transfers.

When we went to 2-person transfers it was a caregiver and me. They were a challenge since we were then trying to coordinate three peoples’ motions, but it got the job done. 2-person did not last long, just a couple of months, before she was unable to withstand the efforts needed to move her, even with two people and she refused — REFUSED to use the Hoyer lift we had. She saw that as far too much of an indignity but that was just her and her fighting spirit.

It still amazes me how much she had to give up and accept…

Peace, courage, and strength

Liked by macbeth

@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 don’t really know but it seems to me you should see the dermatologist just so you know for sure it is not something you can do something about. If he says it’s nothing skin wise then you know it is the Aslzheimer and we will work on distracting techniques. My question is; my sister lives with my husband and I and has had Alzheimer’s for about 5 years. We just got it diagnosed last month (9/16). She has not said another word about it since then. Do you think I should bring it up to ask her how she feels about it? Does she want to tell our siblings? We have already done the DPOA, wills etc. what do you think? Does she really need to talk about it? Should I push for her permission to tell our siblings?

@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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This is what I am looking for. If I post this does it mean I’m part of the care for dementia people group?

@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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sallysue, my mom never could come to grips with the fact that she had Alzheimer’s and therefore never shared the news with family. My sister and I talked with our aunts and other family who needed to know but we didn’t publicize to others. Mom knew there was something wrong and she grieved it so much but just couldn’t say he words. I think we honored her in not asking her to tell others. Hope this helps you.

@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 @nanax2! That is what I needed to hear. My sister is not grieving it so far. Our lives continue and she follows my suggestions about schedules, diet and lets me give her her meds. So with your supportive reply I think I will just let her be herself and answer the siblings questions as they arise. Thank you so much it has been nagging me and my husband for these last 4 weeks.

Liked by nanax2, wbuawxman

@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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@sallysue In my opinion I do not believe you should sister in talking about her Alzheimers but just let her know and give here the environment that you are there to listen without judgement or negativity. She will be going through a rollercoaster of emotions and she will need you to be her rock. I know this will be hard but she will be going through emotions while the Alzheimers takes control. Keep in touch with this conversation group for your support.

Liked by ladycat

@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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If you want to be we are here for you and what ever your needs are

Liked by ladycat

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