Recommended thread Compassionate Communication with the Memory Impaired

Discussion in 'Health and wellbeing' started by Grannie G, Jan 24, 2011.

  1. Spamar

    Spamar Registered User

    Oct 5, 2013
    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 !
  2. babystar

    babystar Registered User

    Apr 10, 2013
    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...
  3. Raffles

    Raffles Registered User

    Nov 8, 2008
    North Wales

    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.
  4. Grandma Joan

    Grandma Joan Registered User

    Mar 29, 2013
    #224 Grandma Joan, Apr 7, 2014
    Last edited: Apr 7, 2014
    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.
  5. Jinx

    Jinx Registered User

    Mar 13, 2014
    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?

    Sent from my iPad using Talking Point
  6. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    I tried but couldn't stick with it. I think we just need to do the best we can.
  7. Spamar

    Spamar Registered User

    Oct 5, 2013
    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!
  8. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    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!
  9. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    North West
    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.
  10. Sue J

    Sue J Registered User

    Dec 9, 2009
    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:confused::rolleyes:

    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:)
  11. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    North West
    I'm sure I'd feel like that if I was in your position Sue.

    Take care.
  12. NanLorac

    NanLorac Registered User

    May 14, 2012
    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.

  13. dizzyjake

    dizzyjake Registered User

    Jan 15, 2011
    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.

  14. andyedge8889

    andyedge8889 Registered User

    Jun 2, 2014
    Had a quick read, Ive done all the donts so far...its really helpful to read what is best to do

    Sent from my GT-I9505 using Talking Point mobile app
  15. lillyann

    lillyann Registered User

    Aug 30, 2014
    O M my beautiful Mum has tummy upsets all the time I had no idea it could all be related so awful - devastated
  16. Rettaere

    Rettaere Registered User

    Sep 30, 2014
    Hi Sylvia thank you so much, x

    Sent from my iPhone using Talking Point
  17. Grey Lad

    Grey Lad Registered User

    Sep 12, 2014
    North East Lincs
    Oh Grannie G thanks:just what I needed.

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

    RYECROFT Registered User

    Nov 30, 2014
    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
  19. lin1

    lin1 Registered User

    Jan 14, 2010
    East Kent
    Just bringing this back to the top
  20. rea123

    rea123 Registered User

    Mar 30, 2015
    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....

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