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Recommended thread Compassionate Communication with the Memory Impaired

annielou

Registered User
Sep 27, 2019
1,766
Yorkshire
Thank you so much for all the replies X, I hopefully will figure it out a bit better sometime, hopefully soon. At least I have this place to come to and see I'm not alone and and get tips, even if I don't always figure out how to put them into practice straight away.
Today has been a terrible day starting with mum ringing this morning as I was drying my hair after a shower asking me to go over and bring her to my house because she didn't want to be on her own and was fed up and didn't know what to do with herself and didn't want to do anything, she just wanted me.
I had planned to go over this afternoon but she wanted me now so I quickly finished getting ready, skipped breakfast and got a taxi over . When I got there spent an hour with mum telling me how lonely she felt and how she just wanted to die because she hated being on her own. Said she knew she put it all on me so would she be better in a home so she had someone to talk to? she wished she had some friends because she was so lonely and didn't want to be in her house and couldn't and didn't want to live with us, interspersed with her getting a bit angry with me a few times that I couldn't offer her a solution. It was so sad to hear her being so low and lonely especially the wanting to die part. i felt utterly useless.
Then we came over to my house on two buses, she was quite wobbly on her feet and it was quite a journey as she hasn't been on a bus since January and it really wore her out but she wanted to do it so we did.
We had lunch and a couple of quiet hours watching tv and then around 4ish she stated asking what she would do? where did she live and seemed to have forgotten her house again. Kept asking questions about it and started talking about homes again and this time asked about living with us, but she said we wouldn't want her to and it wasn't fair to hubby either. I said I was worried about her with the stairs and leaving her alone here if we went out, to which she said she wasn't worried about stairs and then an hour later when going up to the loo, she had to stop 3 times on the way up cos she had wobbly legs. I always follow her up and also walk down in front of her now as the last couple of weeks she really struggles with them when shes here.
She seemed ok for a bit but then after tea when she said it was time to go home she started having a go at me about taking too long getting ready to take her. We were supposed to be going to the inlaws tonight which mum knew about but I had warned hubby I probably wouldn't go if she was unsure when she got home and I might stay with mum till he came home. When we got to mums she was ok about us going but then got confused about us going to doctors for blood tests in morning and if we were coming back tonight to take her so I ended up staying at hers while hubby went. She didn't like that,said she didn't need it but I was pretty sure as soon as we'd have left she would have been ringing our house to check times etc and ask what doing tomorrow which wouldn't have been any good if I was at inlaws.
For the first half hour or so she kept telling me off and saying I should have gone with hubby, asking why I hadn't so I told her because I wanted to be available to answer her questions about tomorrow, and then she started saying she didn't know what to do why she got confused and would they put her in a home cos she's mental and she wouldn't like it because they aren't nice and didn't want to go in one.
She did ask a lot of times about tomorrow and had me write down what time we'd be picking her up but she had calmed down a while before hubby came and then said she was going to bed when we left and was just getting ready when I rang to tell her I'm home.
I should be going myself as have to be up a bit earlier than normal tomorrow for docs but not sure if my mind will shut off. I just wish I could make things better for her
 

White Rose

Registered User
Nov 4, 2018
679
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: another source of this information is here

http://www.ocagingservicescollabora...te-Communication-with-the-Memory-Impaired.pdf
This is really very useful but now I hate myself because I've been doing it all wrong, equally I don't think I can be the kind of angel who can behave as required. Yes it makes perfect sense and yes you want to be compassionate and understanding but being a full time carer just grinds you down.
 

Cat27

Volunteer Moderator
Feb 27, 2015
11,716
Merseyside
This is really very useful but now I hate myself because I've been doing it all wrong, equally I don't think I can be the kind of angel who can behave as required. Yes it makes perfect sense and yes you want to be compassionate and understanding but being a full time carer just grinds you down.
Please don’t beat yourself up. You are doing the very best you can. This is a guideline & doesn’t work for everyone.
I tried & failed a million times. I wish you strength.
 

White Rose

Registered User
Nov 4, 2018
679
Please don’t beat yourself up. You are doing the very best you can. This is a guideline & doesn’t work for everyone.
I tried & failed a million times. I wish you strength.
Thanks @Cat27 I don't think I'm doing the best for him, but as there's really no one else who will do it then I just have to get on with it. It feels like I've been set this challenge in life but am failing miserably!
 

Grannie G

Volunteer Moderator
Apr 3, 2006
72,110
Kent
Hello @White Rose

Compassionate Communication is here as Cat27 said for guidance only. We would all be saints if we could follow it to the letter.

I just hoped if carers could find a few pointers they might feel able to work with, it would give them some strategies for coping.

Please don`t hate yourself. There is no right and wrong. All we can do is try to manage our individual situations. If we can reduce stress and anxiety in both ourselves as carers and those we are caring for it is as much as anyone can ask.
 

White Rose

Registered User
Nov 4, 2018
679
Hello @White Rose

Compassionate Communication is here as Cat27 said for guidance only. We would all be saints if we could follow it to the letter.

I just hoped if carers could find a few pointers they might feel able to work with, it would give them some strategies for coping.

Please don`t hate yourself. There is no right and wrong. All we can do is try to manage our individual situations. If we can reduce stress and anxiety in both ourselves as carers and those we are caring for it is as much as anyone can ask.
Thank you @Grannie G and yes guidance is certainly helpful, I'm going to try harder!
 

Metalpetal

Registered User
May 10, 2020
116
This is such a useful guide, thanks for bumping up to the top of the ‘what’s new’ list, so I spotted it :)

I keep sort of hoping that mum will ‘snap out of it’ but I guess that’s denial on my part. Until March she was such a quick-witted sharp intelligent on the ball person, it sort of seems unbelievable that this can be happening In such a short space of time.

So knowing how to talk to her it’s hugely helpful. It’s just tough to get used to - one minute we’ll be having a lucid conversation about Covid19 and all of the political stuff going on, and the next she’s talking as though she lives back in our old house from 40 years ago. It’s very difficult but we owe it to her to make it as easy for her as possible.
 

Citroen 2cv

Registered User
Mar 1, 2019
81
Spain
Great info yet when carer is at their limits it’s very hard to do. I have so much compassion for mums illness yet there is nothing for me. My nerves are beyond breaking point my health both physically and mentally not forgetting emotionally yet I still have to show compassion. I wish I could but can’t anymore
 

nae sporran

Volunteer Host
Oct 29, 2014
7,216
Bristol
Great info yet when carer is at their limits it’s very hard to do. I have so much compassion for mums illness yet there is nothing for me. My nerves are beyond breaking point my health both physically and mentally not forgetting emotionally yet I still have to show compassion. I wish I could but can’t anymore
So hard isn't it, Citroen 2cv. I was going to offer some positive words of encouragement, but we can only do what we can do. Try the dementia connect helpline if things are that bad to see what they can offer, and I may be getting to the stage where that is a sensible option too. https://www.alzheimers.org.uk/dementiaconnect
 

Citroen 2cv

Registered User
Mar 1, 2019
81
Spain
So hard isn't it, Citroen 2cv. I was going to offer some positive words of encouragement, but we can only do what we can do. Try the dementia connect helpline if things are that bad to see what they can offer, and I may be getting to the stage where that is a sensible option too. https://www.alzheimers.org.uk/dementiaconnect
We live in Spain very little understanding of dementia here also care is done by family it’s still a new concept here for outside care or help. I have tried to get mum back to U.K. but that is pretty much impossible.
 

Saint Jo

New member
Aug 31, 2019
1
As a new member I found this very helpful. My husband was only diagnosed in 2018. I'm still learning so much about the Dos & Don'ts of communicating with him and this has set me on the right track.
I feel its like living with a toddler who is regressing. many thanks
 

nae sporran

Volunteer Host
Oct 29, 2014
7,216
Bristol
As a new member I found this very helpful. My husband was only diagnosed in 2018. I'm still learning so much about the Dos & Don'ts of communicating with him and this has set me on the right track.
I feel its like living with a toddler who is regressing. many thanks
Welcome to the forum @SaintJo. Good to see the thread and the site helped you. Your comparison between dementia and regressing toddler seems apt some days.
 

Rosemarie 60

New member
Nov 17, 2020
7
Very useful advice. Thank you
my job is support worker for Adults with learning disabilities.
my mum with dementia is really hard I have no experience at all.
Supporting adults with LD is easier as you can negotiate.
I see choosing your words to different situations is the answer.
 

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