Compassionate Communication with the Memory Impaired

[Spamar]

I'm with Raffles and izzy, there is no way I can keep it up day after day. And, of course, a dementia patient doesn't make allowances for when I'm having a bad day with my own illnesses !

 

[babystar]

Found this via another post -- very interesting. Kind of what I thought I should be doing but magnified by a thousand! It's only hard as we have an over-whelming urge to reason, explain, and confront instead of just accepting.

I had a clue to this when we had a visit from the AS representative. They spoke about the NHS and how older patients weren't drinking enough because they couldn't see the clear-coloured cups. They changed them to red-coloured cups and the drinking improved by a huge percentage. Cue Mum disappearing off to the kitchen and coming back with a red thermal mug and showing it to the AS rep. When they were leaving Mum said "don't forget your cup", and they said, "oh yes, would you mind if I left it here for next time?" Not, "that's not my mug!", or "you just got that from your kitchen". Soooo hard to imagine dealing with every little thing like that though!

I think it's hard as you expect them to understand. You remember when they had their memory and it's hard to adjust and/or believe that they don't understand the things you say. I tried calling Mum a couple of times the other night to let her know I was back after dropping her home, but no answer. She has some kind of aversion to answering it so you're lucky if she does. Later she rang me and said "you didn't call me". To which I said "yes I did, I called twice, but as usual no bloody answer!" My husband said afterwards that I didn't need to tell her I'd tried calling, but I was most indignant that she was saying I hadn't! Especially as before I left her I told her I was going to call and to make sure she had the phone next to her.

I find it hard to accept I'm wrong even if I am, let alone if I'm not! This will definitely be something to work on...

 

[Raffles]

Thanks

I'm with Raffles and izzy, there is no way I can keep it up day after day. And, of course, a dementia patient doesn't make allowances for when I'm having a bad day with my own illnesses !

Thanks Izzy I was beginning to think I was the only one who found 24/7 looking after an Alzheimer's husband impossible to be doing perfectly as one is expected to, especialy when one is 83 and in poor health and has to have a carer come to help her shower as well as her husband. I find the wives who do it best are ones who also like babies, they seem to enjoy doing things for someone who is helpless. I must admit babies are not my thing I prefer it when they start talking and become more interesting. My husband used to get out of the car and come round to help pull me out. Now I have to stand in the cold and rain to help him in and fasten his seatbelt then somehow get in and outmyself. I am lucky in as much as once I am in the car my seat is comfortable and I have no problems driving.

 

[Grandma Joan]

Such a wonderful insight into the disease that I wish myself and all my family had read last year when my Adorable Dad's dementia progressed at a phenomenal rate and we were in a whirlwind.

If we had known how to cope a little better then I'm sure we could have kept Dad at home a little longer and felt comfort from the fact that we had done as much as we possibly could but sadly it wouldn't have prevented the inevitable.

Dad was under the Memory Clinic but I don't remember any of the CPN's giving us any insight into this at all.

It was such a torrid time we were just trying within our limited knowledge of the disease to support him and each other and had no time to go seeking help it need to come to us. I remember saying we are not experts - where are the experts to help us?

I am hopeful that as awareness increases each family Living with Dementia will have the support they need at such an incredibly difficult time.

 

[Jinx]

Such a lot to remember! I know I'm doing it all wrong. I find it so hard to distract my OH he doesn't forget whatever it is until he's slept. So at the moment he's wanting to go to his childhood home in London, and I have tried several ways to distract but he comes back to the same thing every time. Anyone hot any suggestions?

There's a book I've started reading called 'Contented Dementia' by Oliver James, This book starts with 3 commandments: 1. Don't ask questions. 2. Learn from them as the experts on their disability. 3. Always agree with everything they say, never interrupting them. Has anyone else read it?


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[Izzy]

I tried but couldn't stick with it. I think we just need to do the best we can.

 

[Spamar]

Me as well, izzy, read it, admired those who could stick with it but I can't. I do my best, but OH is so variable, what works one day doesn't work the next!

 

[Izzy]

Me as well, izzy, read it, admired those who could stick with it but I can't. I do my best, but OH is so variable, what works one day doesn't work the next!

That's how I felt. At the time it was my mum who was the bigger concern. She had vascular dementia. I seemed to tie myself in knots with it!

 

[stanleypj]

Such a lot to remember! I know I'm doing it all wrong. I find it so hard to distract my OH he doesn't forget whatever it is until he's slept. So at the moment he's wanting to go to his childhood home in London, and I have tried several ways to distract but he comes back to the same thing every time. Anyone hot any suggestions?

There's a book I've started reading called 'Contented Dementia' by Oliver James, This book starts with 3 commandments: 1. Don't ask questions. 2. Learn from them as the experts on their disability. 3. Always agree with everything they say, never interrupting them. Has anyone else read it?


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There are some helpful suggestions in the Compassionate Communications post but that's all they are - suggestions. They have obviously worked with some people but they will not necessarily work with everyone all the time. The author io the document does not make this clear

Likewise with Oliver James. The book should also be used as a possible source of some ideas but 1 and 3 are hopeless if, and he doesn't make this clear, they are expected to apply to everyone at every stage. We've got plenty of people who post on TP who would, I suspect, be appalled if they were treated in the same way - and they would be quite right to be appalled.

 

[Sue J]

This book starts with 3 commandments: 1. Don't ask questions. 2. Learn from them as the experts on their disability. 3. Always agree with everything they say, never interrupting them.

1 and 3 are hopeless if, and he doesn't make this clear, they are expected to apply to everyone at every stage. We've got plenty of people who post on TP who would, I suspect, be appalled if they were treated in the same way - and they would be quite right to be appalled.

I haven't read the book but I do know that with my symptoms I fare much better with people who still treat me like a 'normal' person or as if I am still me. In fact I would rather people ask questions sometimes so that they can understand why I can/can't do certain things, of course I don't always know the answer. Funnily I find most Drs don't ask questions - how will they ever understand

I do not fare well with medical professionals/family/friends who take the stance in 1,2,3 - I still have, at times, the thinking mind I always have and to be treated as if that has totally disappeared is like writing me off when I'm still here and I am trying to hold onto it

 

[stanleypj]

I'm sure I'd feel like that if I was in your position Sue.

Take care.

 

[NanLorac]

I'm reading Contented Dementia for the second time. First time I thought this is going to be hard work. After reading And Still The Music Plays and Learn to Speak Alzheimer's I have gone back to Contented Dementia with new eyes.

I would love to know if anyone has put this into practice because I have a contented husband and I would give anything to keep him this way. He was diagnosed last year with Alzheimer's aged 62.

Carol

 

[dizzyjake]

I Wish I'd Found This Sooner

This is absolutely brilliant Liz. Much of this I've stumbled over in the last 3 years of mum's AD, but is now mandatory reading for all the family when they visit. I wish I'd found it sooner. Such brilliant insight. I can't wait to try some of the suggestions on mum, who I know will react very positively.

Phil

 

[andyedge8889]

Had a quick read, Ive done all the donts so far...its really helpful to read what is best to do

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[lillyann]

Thank you for this.I have printed it off for my husband and I to refer to.I think we so far have managed all the don'ts
Reading the bit about being scared all the time has made sense of something for me. My Mum has a lot of tummy upsets these days. Before she had dementia she always got a tummy upset if worried or afraid about something. It explains why we are having so many upsets now if she is always feeling scared. I shall mention it to the CH next time I visit as they won't know about the connection between her nervy disposition and the tummy troubles.

O M my beautiful Mum has tummy upsets all the time I had no idea it could all be related so awful - devastated

 

[Rettaere]

Hi Sylvia thank you so much, x


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[Grey Lad]

Oh Grannie G thanks:just what I needed.

A worn out Grey Lad needs to be more COMPASSIONATE IN HIS COMMUNICATION!

 

[RYECROFT]

Dealing with fear

Dear People
Thank you so much for all the ideas in Compassionate Communication for the Memory Impaired. This is really helpful for me and my brothers and sister who are supporting my mother who is struggling to remember the events of the day and to remember what she has to organise for herself and our father. I have talked about her forgetfulness and she was initially angry and felt we were trying to label her and write her off. It was better when I simply expressed how concerned we were and that there might be help we could find.
Talking with a friend yesterday I found that her mother is losing her memory for her own actions and forgets where she last put things and presumes they are lost and stolen, and panics. I am going to pass on the Compassionate Communication link to her.
regards from Ryecroft

 

[lin1]

Just bringing this back to the top

 

[rea123]

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
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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

wow how wrong have i been getting it... was just about to go to bed and pull the duvet over my head until i feel ready to face the world and my husband for round 36 off todays battles .... will read those points again and try to implement them the best i can thanku....