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Recommended thread Compassionate Communication with the Memory Impaired

TimT

Registered User
May 11, 2015
10
DON'T
Don’t reason.
Don’t argue.
Don’t confront.
Don’t remind them they forget.
Don’t question recent memory.
Don’t take it personally.

Thanks for these guidelines!
That's where I'm going wrong. I do all these. At some point you understand the futility of it all and it gradually sinks in. You learn the hard way.
 

Rageddy Anne

Registered User
Feb 21, 2013
5,984
Cotswolds
Specifically, asking to go home..

Been trying to distract and all the rest, but my husband has spent the whole evening getting more and more agitated because he wants to go home.
It didn't matter how I answered or what I said, he carried on demanding to be taken home. I asked him to remind me what home was like, and it seemed to be his childhood home, but the people who he wanted to see were our children, and former friends from work. No matter how much I tried to distract, he became more angry, demanding that we start out NOW!

This has been happening evening after evening, and I'm at a loss, because changing the subject, distracting, everything comes back to another demand...PLEASE take me home now.

How do you answer this question? Any suggestions?
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,674
Kent
There was no way I could get round it either Anne.

My husband had the mobility to get up and go and we went through this almost nightly and I can`t remember how long it lasted. It seemed to be for years.

There was nothing I could do to stop him so I let him go and then followed him, with house keys in one hand and mobile in the other.

Sometimes it wore off and he thought he met me by chance and came home with me. Sometimes it was so bad I had to phone my son for help. My son took him to his house which luckily was near and he managed to calm my husband down.

It was strange because however many times my husband didn`t know me, he always knew our son.

It was a nightmare and I hope I never have to go through anything like that again.
 

Rageddy Anne

Registered User
Feb 21, 2013
5,984
Cotswolds
Thankyou Granny G...that's exactly how things are here, but it gives me comfort knowing I'm not alone in facing this particular challenge....it doesn't go on all day, it's in the evenings, Sundowning time, and subsides at bedtime....
The consultant has accepted my plea to try Citalopram, which others on here have recommended, and that starts today. I don't think it will make an immediate difference, but maybe over time.

Sorry to remind you about this, but did Dhiren always know you at the time this was happening? My husband has recently started not recognising me sometimes, and I wonder if he would come home with a stranger. He hasn't actually gone out on his own, but letting him and following him might be better than trying to keep him here. Perhaps I'll suggest we walk home together, but, oh my poor old arthritic knees won't welcome that!

As a matter of interest, a few months ago my sister in law actually took my husband back to his childhood home, and we think he didnt really recognise it, even though they were invited into the back garden, and he had his photo taken next to a tree his Dad planted.

In his more aware moments he has actually said the place he wants to go back to is a place where he knows his way around and what's going on.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,674
Kent
Sorry to remind you about this, but did Dhiren always know you at the time this was happening? My husband has recently started not recognising me sometimes,

.
Don`t apologise for reminding me Anne, it`s one of the reasons I`m still on TP , to share experiences, as people ahead of me shared their experiences when I was struggling.

When Dhiren went walkabout he did not know me. He was going home to his real wife and his real family. It was always sundowning even though it often happened in the early afternoon.

In the early days when he walked by himself I didn`t realise he was looking for home. I was used to him walking for a couple of hours, something he had always done. It was only as he began to stay out longer and and returned home exhausted, I realised he was unable to pace himself and it became a worry.

As the dementia progressed his stamina and mobility became affected and he didn`t go as far.

Many times we would have dinner , return to the living room , sit for 5 minutes and then he would say, `I`m going home now. I`ll see you tomorrow.` or `I`ll have to go now. My wife will be worried.`

Once I accepted reasoning was out of the question I had to let him go.
 

Crunchy

Registered User
Feb 21, 2016
42
Thank you for bumping this for us newbies!

My mum asks the same questions about the family over and over again, so I've got in the habit of always showing her photos of them on my phone. Whenever my kids spend time with her, I take quick photos of them together, and my mum loves looking at them and occasionally genuinely seems to remember the event, even though she wouldn't know if it was yesterday or months ago.

Once I accepted that she lived in the present moment, it became much less traumatic to chat with her. If she becomes distressed about her memory loss, I reassure her and say no-one minds that she can't remember.

I often think she pretends to remember who the family are, so I always make sure I announce the names of all of us when we arrive to help her, eg: "hello mummy, I've brought B to visit his Nana today!" So then she knows the name and the relationship. Her memory of my kids is of chubby little toddlers, not six foot young men ;)

One trick I sometimes use if she asks me the same question over and over again repetitively is to make it a bit of a game. I tell her she's asked me that question loads, so can she guess the answer as I think her brain knows it really. Nine out of ten times she answers it correctly, so I make a big fuss of her, which makes her happy and relieved. Obviously I won't do this if she deteriorates further. But sometimes I think she simply is too scared to say something wrong so she asks repeatedly just to check.
 

Gooby

Registered User
Mar 5, 2016
18
you must be a saint

The following piece was posted a while ago on TP and made a big impression on me. It is something I have referred to time after time and tried hard to follow.

We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if it had a Thread of it`s own.

It`s a tall order but an excellent guideline.


Compassionate Communication with the Memory Impaired

by Liz Ayres
A Volunteer of the Alzheimer's Association and Former Caregiver

DON'T
Don’t reason.
Don’t argue.
Don’t confront.
Don’t remind them they forget.
Don’t question recent memory.
Don’t take it personally.



DO
Give short, one sentence explanations.
Allow plenty of time for comprehension, then triple it.
Repeat instructions or sentences exactly the same way.
Eliminate 'but' from your vocabulary; substitute 'nevertheless.'
Avoid insistence. Try again later
Agree with them or distract them to a different subject or activity
Accept blame when something’s wrong (even if it’s fantasy).
Leave the room, if necessary, to avoid confrontations.
Respond to feelings rather than words
Be patient and cheerful and reassuring. Do go with the flow.
Practice 100% forgiveness. Memory loss progresses daily.
My appeal to you: Please.elevate your level of generosity and graciousness.



Remember

You can’t control memory loss, only your reaction to it. Compassionate communication will significantly heighten quality of life.

They are not crazy or lazy. They say normal things, and do normal things, for a memory impaired, dementia individual. If they were deliberately trying to exasperate you, they would have a different diagnosis. Forgive them ... always. For example: they don’t hide things; they protect them in safe places... And then forget. Don’t take ‘stealing’ accusations personally.

Their disability is memory loss. Asking them to remember is like asking a blind person to read. (“Did you take your pills?” “What did you do today?”) Don’t ask and don’t test memory! A loss of this magnitude reduces the capacity to reason. Expecting them to be reasonable or to accept your conclusion is unrealistic. (“You need a shower.” “Day care will be fun.” “You can’t live alone.”) Don’t try to reason or convince them. Give a one sentence explanation or search for creative solutions. Memory loss produces unpredictable emotions, thought, and behavior, which you can alleviate by resolving all issues peacefully. Don’t argue, correct, contradict, confront, blame, or insist.

Reminders are rarely kind. They tell the patient how disabled they are – over and over again. Reminders of the recent past imply, “I remember, I’m okay; you don’t, you’re not. ”Ouch! Refer to the present or the future. (If they’re hungry, don’t inform them they ate an hour ago, offer a snack or set a time to eat soon.) They may ask the same question repeatedly, believing each time is the first. Graciously respond as if it’s the first time. Some days may seem normal, but they are not. They live in a different reality. Reminders won’t bring them into yours. Note: For vascular dementia, giving clues may help their recall. If it doesn’t work, be kind ... don’t remind.

Ethical dilemmas may occur. If, for instance, the patient thinks a dead spouse is alive, and truthful reminders will create sadness, what should you do? To avoid distress, try these ways of kindness: 1) distract to another topic, or 2) start a fun activity, or 3) reminisce about their spouse, “I was just thinking about ______. How did you two meet?” You might even try, “He’s gone for a while. Let’s take our walk now.”

Open-ended questions (“Where shall we go?” “What do you want to eat/wear/do?”) are surprisingly complex and create anxiety. Give them a simple choice between two items or direct their choice, “You look great in the red blouse.”

They are scared all the time. Each patient reacts differently to fear. They may become passive, uncooperative, hostile, angry, agitated, verbally abusive, or physically combative. They may even do them all at different times, or alternate between them. Anxiety may compel them to shadow you (follow everywhere). Anxiety compels them to resist changes in routine, even pleasant ones. Your goal is to reduce anxiety whenever possible. Also, they can’t remember your reassurances. Keep saying them.

Examples

Don’t reason

Patient What doctor’s appointment? There’s nothing wrong with me.”
Don’t (reason) “You’ve been seeing the doctor every three months for the last two years. It’s written on the calendar and I told you about it yesterday and this morning.”
DO (short explanation) “It’s just a regular check-up.”
(accept blame) “I’m sorry if I forgot to tell you.”

Don’t argue

Patient “I didn’t write this check for $500. Someone at the bank is forging my signature.”
Don’t (argue) “What? Don’t be silly! The bank wouldn’t be forging your signature.”
DO (respond to feelings) “That’s a scary thought.”
(reassure) “I’ll make sure they don’t do that.”
(distract) “Would you help me fold the towels?”

Don’t confront
Patient “Nobody’s going to make decisions for me. You can go now ... and don’t come back!”
Don’t (confront) I’m not going anywhere and you can’t remember enough to make your own decisions.”
DO (accept blame or respond to feelings) “I’m sorry this is a tough time.”
(reassure) “I love you and we’re going to get through this together.”
(distract) “You know what? Don has a new job. He’s really excited about it.


Don’t remind them they forget
Patient: “Joe hasn’t called for a long time. I hope he’s okay.”
Don’t (remind) “Joe called yesterday and you talked to him for 15 minutes.”
DO (reassure) “You really like talking to Joe, don’t you?”
(distract) “Let’s call him when we get back from our walk.”



Don’t question recent memory

Patient “Hello, Mary. I see you’ve brought a friend with you.”
Don’t (question memory) “Hi, Mom. You remember Eric, don’t you? What did you do today?”
DO (short explanation) “Hi, Mom. You look wonderful! This is Eric. We work together.”



Don’t take it personally!

Patient “Who are you? Where’s my husband?”
Don’t (take it personally) “What do you mean – who’s your husband? I am!”
DO (go with the flow, reassure) “He’ll be here for dinner.”
(distract) “How about some milk and cookies?” .. Would you like chocolate chip or oatmeal?



Do repeat exactly

Patient "I'm going to the store for a newspaper."
Don’t (repeat differently) "Please put you shoes on."
"You'll need to put your shoes on."
DO (repeat exactly) "Please put your shoes on."
"Please put your shoes on."



Do eliminate "but", substitute "nevertheless"
Patient "I'm not eating this. I hate chicken."
Don’t (say "but") "I know chicken's not your favorite food, but it's what we're having for dinner."
DO (say "nevertheless") "I know chicken's not your favorite food, (smile) nevertheless I'd appreciate it if you'd eat a little bit."

Used with permission from Ellen Warner at Ageless Design
__________________
__________________

As per requests from members: the original source of this information is here

http://www.agelessdesign.com/Library/InfoManage/Zoom.asp?InfoID=296&RedirectPath=Add1&FolderID=104&SessionID={F6D6DF4E-D924-452C-9E03-21D0E8CA0183}&InfoGroup=Main&InfoType=Article&SP=2

This is a page from my life with my OH and I often get exasperated ....memory loss I can cope with but the venom and accusations of taking objects/money that he has hidden and then forgotten where he put them. Sausages/quiche hidden under chair cushions not to mention the odd banana and oranges in pockets....Your list is v. helpful though - I now take the blame and it does help. But the few hours I manage to get away into the normal world are invaluable....

Gooby
 

SnowWhite

Registered User
Nov 18, 2016
699
Thank you for posting about Compassionate Communication. It's all quite new to me as Mum was only diagnosed a few weeks ago and I had no preparation, as I guess most of us don't.

Having read that, I can hear myself doing wrong all weekend when Mum was here. I kept saying things like "you remember" or "I told you that several times" I know it's absolutely stupid of me and I will make more effort in future.

Can anybody recommend a very basic guide to Alzheimer's to read please. I have such a lot of other things and worries going on in my life apart from Mum that it can't be anything too complicated. Thanks.
 

Kerstin

Registered User
Jun 6, 2017
5
I need to retrain my brain now.

Guess it's time to retrain my brain. I'm sure no one will be able to adhere to all of this in real time. But I'm sure going to try to do my best. I appreciate articles like these because it makes me feel less alone. I'm learning so much from other families.
 

Tourist98

Registered User
Jul 4, 2017
6
The following piece was posted a while ago on TP and made a big impression on me. It is something I have referred to time after time and tried hard to follow.

We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if it had a Thread of it`s own.

It`s a tall order but an excellent guideline.


Compassionate Communication with the Memory Impaired

by Liz Ayres
A Volunteer of the Alzheimer's Association and Former Caregiver

DON'T
Don’t reason.
Don’t argue.
Don’t confront.
Don’t remind them they forget.
Don’t question recent memory.
Don’t take it personally.



DO
Give short, one sentence explanations.
Allow plenty of time for comprehension, then triple it.
Repeat instructions or sentences exactly the same way.
Eliminate 'but' from your vocabulary; substitute 'nevertheless.'
Avoid insistence. Try again later
Agree with them or distract them to a different subject or activity
Accept blame when something’s wrong (even if it’s fantasy).
Leave the room, if necessary, to avoid confrontations.
Respond to feelings rather than words
Be patient and cheerful and reassuring. Do go with the flow.
Practice 100% forgiveness. Memory loss progresses daily.
My appeal to you: Please.elevate your level of generosity and graciousness.



Remember

You can’t control memory loss, only your reaction to it. Compassionate communication will significantly heighten quality of life.

They are not crazy or lazy. They say normal things, and do normal things, for a memory impaired, dementia individual. If they were deliberately trying to exasperate you, they would have a different diagnosis. Forgive them ... always. For example: they don’t hide things; they protect them in safe places... And then forget. Don’t take ‘stealing’ accusations personally.

Their disability is memory loss. Asking them to remember is like asking a blind person to read. (“Did you take your pills?” “What did you do today?”) Don’t ask and don’t test memory! A loss of this magnitude reduces the capacity to reason. Expecting them to be reasonable or to accept your conclusion is unrealistic. (“You need a shower.” “Day care will be fun.” “You can’t live alone.”) Don’t try to reason or convince them. Give a one sentence explanation or search for creative solutions. Memory loss produces unpredictable emotions, thought, and behavior, which you can alleviate by resolving all issues peacefully. Don’t argue, correct, contradict, confront, blame, or insist.

Reminders are rarely kind. They tell the patient how disabled they are – over and over again. Reminders of the recent past imply, “I remember, I’m okay; you don’t, you’re not. ”Ouch! Refer to the present or the future. (If they’re hungry, don’t inform them they ate an hour ago, offer a snack or set a time to eat soon.) They may ask the same question repeatedly, believing each time is the first. Graciously respond as if it’s the first time. Some days may seem normal, but they are not. They live in a different reality. Reminders won’t bring them into yours. Note: For vascular dementia, giving clues may help their recall. If it doesn’t work, be kind ... don’t remind.

Ethical dilemmas may occur. If, for instance, the patient thinks a dead spouse is alive, and truthful reminders will create sadness, what should you do? To avoid distress, try these ways of kindness: 1) distract to another topic, or 2) start a fun activity, or 3) reminisce about their spouse, “I was just thinking about ______. How did you two meet?” You might even try, “He’s gone for a while. Let’s take our walk now.”

Open-ended questions (“Where shall we go?” “What do you want to eat/wear/do?”) are surprisingly complex and create anxiety. Give them a simple choice between two items or direct their choice, “You look great in the red blouse.”

They are scared all the time. Each patient reacts differently to fear. They may become passive, uncooperative, hostile, angry, agitated, verbally abusive, or physically combative. They may even do them all at different times, or alternate between them. Anxiety may compel them to shadow you (follow everywhere). Anxiety compels them to resist changes in routine, even pleasant ones. Your goal is to reduce anxiety whenever possible. Also, they can’t remember your reassurances. Keep saying them.

Examples

Don’t reason

Patient What doctor’s appointment? There’s nothing wrong with me.”
Don’t (reason) “You’ve been seeing the doctor every three months for the last two years. It’s written on the calendar and I told you about it yesterday and this morning.”
DO (short explanation) “It’s just a regular check-up.”
(accept blame) “I’m sorry if I forgot to tell you.”

Don’t argue

Patient “I didn’t write this check for $500. Someone at the bank is forging my signature.”
Don’t (argue) “What? Don’t be silly! The bank wouldn’t be forging your signature.”
DO (respond to feelings) “That’s a scary thought.”
(reassure) “I’ll make sure they don’t do that.”
(distract) “Would you help me fold the towels?”

Don’t confront
Patient “Nobody’s going to make decisions for me. You can go now ... and don’t come back!”
Don’t (confront) I’m not going anywhere and you can’t remember enough to make your own decisions.”
DO (accept blame or respond to feelings) “I’m sorry this is a tough time.”
(reassure) “I love you and we’re going to get through this together.”
(distract) “You know what? Don has a new job. He’s really excited about it.


Don’t remind them they forget
Patient: “Joe hasn’t called for a long time. I hope he’s okay.”
Don’t (remind) “Joe called yesterday and you talked to him for 15 minutes.”
DO (reassure) “You really like talking to Joe, don’t you?”
(distract) “Let’s call him when we get back from our walk.”



Don’t question recent memory

Patient “Hello, Mary. I see you’ve brought a friend with you.”
Don’t (question memory) “Hi, Mom. You remember Eric, don’t you? What did you do today?”
DO (short explanation) “Hi, Mom. You look wonderful! This is Eric. We work together.”



Don’t take it personally!

Patient “Who are you? Where’s my husband?”
Don’t (take it personally) “What do you mean – who’s your husband? I am!”
DO (go with the flow, reassure) “He’ll be here for dinner.”
(distract) “How about some milk and cookies?” .. Would you like chocolate chip or oatmeal?



Do repeat exactly

Patient "I'm going to the store for a newspaper."
Don’t (repeat differently) "Please put you shoes on."
"You'll need to put your shoes on."
DO (repeat exactly) "Please put your shoes on."
"Please put your shoes on."



Do eliminate "but", substitute "nevertheless"
Patient "I'm not eating this. I hate chicken."
Don’t (say "but") "I know chicken's not your favorite food, but it's what we're having for dinner."
DO (say "nevertheless") "I know chicken's not your favorite food, (smile) nevertheless I'd appreciate it if you'd eat a little bit."

Used with permission from Ellen Warner at Ageless Design


As a new member, this is just what I need! Thank you :)
 

Tourist98

Registered User
Jul 4, 2017
6
Sorry, you can tell how new I am....I replied within the post! Just wanted to say that this sort of information is invaluable for new members :)
 

Mum1945

Registered User
Oct 17, 2017
10
Im so pleased that someone has pointed me in the direction of this post.

I realise that we've been doing everything wrong and things really came to a head for us yesterday as my mum completely lost it.

I feel so guilty for getting cross with her, trying to reason, and ganging up on her with my sister and dad over the weekend. I can't help thinking it's led to her turn yesterday.

I wish I could turn back time and do it all again
 

LadyA

Registered User
Oct 19, 2009
13,563
Ireland
@Mum1945
You, like everyone on here, are doing the best you can, with the knowledge you've got, and I'm guessing no training. Like everyone else, you never signed up for this caring job. It's like finding yourself in the centre of a maze, blindfolded, and told to find your way out!

Nobody gets it right all the time. And often, if things go well, it's as much down to random things than anything you have said/done. Your mum's mood, maybe she had a bad dream that's left her edgy, maybe the weather has everyone on edge.... Guilt is just going to pull you down - don't give it house room, or it will come to stay permanently! You are doing the best you know how. No-one can ask more than that.
 

Mum1945

Registered User
Oct 17, 2017
10
Thank you @LadyA, it's much appreciated.

I know you're right. It's just so hard to think that something we might have done triggered her to go to another level.

I love my mum so much, I just hate to think of her so confused and scared.
 

Mum1945

Registered User
Oct 17, 2017
10
Thank you @Amy in the US. I really will try. I think the fact that the doctor visit went so wrong today has made me feel so guilty. But I hate the idea that if she accepted help, she might improve a little, but because she won't, there's so little we can do.

What a horrendous disease.