Recommended thread Compassionate Communication with the Memory Impaired

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

  1. nicoise

    nicoise Registered User

    Jun 29, 2010
    1,806
    Dear Sylvia,

    I think also that you now have the peace and "head space" to think clearly about what was happening then.

    When you are in the eye of the storm it is very difficult to think clearly. At those times it is usually better to walk away and have physical space and peace in order to think more clearly.

    You only learn as you go along and experience things. You are reading something that you now see so clearly - that may not have been the case before you experienced it.

    So forgive yourself (if the guilt is overwhelming you) for handling something in a way that you might do so differently now. And not to say that even with that knowledge you might not always have been able to say "it is the disease speaking/acting". We always forget that usually the decisions we made at the time were based on the situation as it was then - hindsight is a wonderful thing, of course. Otherwise if we all had the skills in place then there would be no need for TP or books, would there?

    Be kind to yourself - you deserve it x :)
     
  2. lin1

    lin1 Registered User

    Jan 14, 2010
    9,320
    Female
    East Kent
    Sylvia
    Each and every one of us has regrets , god knows ive got plenty .

    I walked away many times , you have to for their sake as well as yours

    If you stay or return too soon the frustration , anger ect that you both feel continues and gets worse , thats not good for the carer or sufferer is it

    If mum was still here id do the same for the same reasons . Sometimes its all we can do , its also a part of looking after ourselves coz we can only take so much.

    We do our best , everything is easier with hindsight, their are plenty of things I would do differently now , just like me you did your level best at the time

    Put that book to one side its not doing you any favours and making you doubt yourself .

    As carers of someone with this awful illness , as each stage starts we go on a steep learning curve and throughout it all we do our best .

    You have always done your best and still are
    Give that dreaded guilt monster a poke in its eye
     
  3. maryw

    maryw Registered User

    Nov 16, 2008
    3,805
    Surrey
    Dear Sylvia, I understand the emotions in your writing. It's all about being close to the person you love and caring SO much. I remember staying in another room whilst the ambulancemen were trying to talk me into accepting Mum needed to go into hospital. The distance is like some form of self-preservation, but you care enormously. It's because you're close and YOU CARE Xx
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,749
    Kent
    With reference to Post #107 on this Thread, I now have permission from the publishers to post the passage which had such a profound effect on me.




    Extract from McCarthy (2010) Hearing the Person with Dementia: Person-Centred Approaches to Communication for Families and Caregivers, published by Jessica Kingsley Publishers
     
  5. susiesue

    susiesue Registered User

    Mar 15, 2007
    2,607
    Herts
    Sylvia, I didn't walk away from David - I just stood and argued with him:eek: Now I have read Compassionate Communication I realise I was totally in the wrong:(

    I now feel really guilty too!, especially now he has died. I honestly believe that we all try and deal with things in our own way (or not deal with them as in my case).

    I feel that it is rather like bringing up children - we are not prepared for it or taught how to do things. On top of that each person with dementia is different - what might have worked for Dhiren probably wouldn't have worked with David.

    So please don't beat yourself up about it - you once said to me 'you can only do your best' and that is exactly what you did.

    Love
     
  6. ellejay

    ellejay Registered User

    Jan 28, 2011
    4,013
    Essex
    Um, just a thought, do you think the authors of these helpful books have actually cared for a sufferer 24/7 sometimes for years? Unless they have, they're not really an expert are they?
    They might know the theory,but thats not always enough. Lin x
     
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,749
    Kent
    I`m no longer beating myself up about anything although I do admit to being shocked when I read this piece.

    However, although I accept we can only do our best, I do believe we should aspire for the best and if we are unaware what the best is, we will be unable to get anywhere near it.

    So it helps me to know the content of the above quote. It helps me to understand the message. I feel it is such a strong message I wanted to pass it on. It does not have to be accepted. I have shared it that`s all.

    I see new information, ideas, suggestions, points of view as our education. This is how we learn. I have been very willing to walk away and to advise others to walk away. I wish I`d read this piece a couple of years ago. It has made me think. And before I walk away again, or suggest others walk away I shall try to think.

    Just that. Something to think about. No more. No blame. No guilt. No recriminations. Something to think about.
     
  8. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Posts 1 and 107 conflict (not your posts Sylvia but the message given by the authors of these two different pieces).

    In post #1 you quote Liz Ayres: “DO ... leave the room, if necessary, to avoid confrontations”

    In post #107 you quote Bernie McCarthy who suggests (in my interpretation) we all go on the biggest guilt trip ever for never losing our patience and walking away for the sake of our blood pressure if nothing else!!!! :eek:

    I took wise counsel here many years ago from members (including yourself, Sylvia) who said turning on their heel was far better than being confrontational.... I wonder Bernie McCarthy has a solid argument for that one? What might it do to someone’s self-esteem to shout at them when they may not understand your frustrations, or maybe do but cannot defend the fact they know they have caused it somehow? And show me a carer never been frustrated ...... ;)

    I am a huge fan of a lot of published by Jessica Kingsley - but I do feel they are generally targeted at professionals rather than individuals in all spheres and I DO think individual carers are sometimes best advised staying away from the ‘text-book’ stuff and giving themselves some other reason for the Guilt Monster to invite themselves in if they fall short of sainthood. :rolleyes:

    It may be worth posting a link here:
    http://jkp.com/catalogue/healthsoccare/tag/dementia

    (Lots of other links from it, of course).

    I recall one Health Visitor years ago, catching me reading Miriam Stoppard, Dr Spock (yes, was still in circulation then!) and sundry other ‘advice books’ on how to bring up my own child ... ‘Throw them away!’ she screamed. ‘Trust your instinct’. Just IMHO the same applies at the other end of the spectrum of life ... only WE know our own as we do – and some text books are only good as door-stoppers!;)

    Love, Karen, x
     
  9. sleepless

    sleepless Registered User

    Feb 19, 2010
    3,223
    Female
    The Sweet North
    Sylvia, having read the quote from the book, can I say that to me it doesn't seem to be about the sort of situation you are remembering between Dhiren and yourself.
    It seems to be describing how someone with dementia might feel when faced with someone being argumentative or unpleasant to them, and their being unable to deal with it, (by either engaging with the other person or walking away.)
    What you were remembering seems to me to have been a much more passive situation, a way of dealing with something, to the benefit of both of you.
     
  10. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,749
    Kent
    That is very true. Thank you Karen. I didn`t see the conflicting advice.
     
  11. Martine

    Martine Registered User

    Nov 29, 2010
    4
    London
    Walking away

    I'm a lurker really, but I have to say something about this.
    I don't think walking away is purely for the sake of our own blood pressures. My father often thinks I am someone else, and complains that his daughter had promised to visit and stood him up. The diversion technique sometimes works, but in the back of his mind he knows he's confused and feels guilty about it (especially when he sees I am lost for words). I believe it's helpful for him to have a half hour to think on his own, and then we make it up again.

    HTML:
    The person with dementia may not be able to walk away, or find the words to say, or assert themselves socially or solve the problem they are faced with.
    True, so we have to guess when they would like to walk away and give them a chance.
     
  12. sleepless

    sleepless Registered User

    Feb 19, 2010
    3,223
    Female
    The Sweet North
    Nicely put, Martine. Thanks for this post.
     
  13. mockingbird

    mockingbird Registered User

    Mar 2, 2011
    1
    edinburgh
    I am a new member and this was the first thread I read. I think this will be so helpful. There are a lot of questions floating about in my head and I am sure I will find many helpful answers on this forum.

    Thank you
    :)
     
  14. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    #134 Tender Face, Mar 2, 2011
    Last edited: Mar 2, 2011
    Sorry, but I feel somewhat mis-quoted there.

    (New emphasis added).

    There can be lots of good reasons for walking away or not (and lots of definitions of what constitutes ‘walking away’:rolleyes:) for benefit of either sufferer or carer. You cite one good example, Martine. I could cite my own that even pre-dementia days with a volatile relationship with my mother I had learnt the only way to resolve ‘flare-ups’ was to put some distance between us (physically, communicatively) for as long as it took for things to simmer down - and sometimes that meant weeks!!!!! (Pre-dementia days!)

    I was concerned that Sylvia and no doubt others, having read a particular text, now thinks with hindsight she didn’t handle situations as she might have done.

    The whole point is one text or theory may direct us one way ... another ‘authority’ may suggest others ....

    I am all for reading as much info as possible (although, Sylvia, I confess I have found reading in ‘hindsight mode’ is a sure trip on another ‘guilt path’:eek:), but feel it is so important, if people chose to do that, to get the balance by reading and researching different ideologies and deciding which is right for the unique person that is the sufferer – and is/are the carer(s) – ditching the texts that you know won’t work in your own personal circumstances and relationship(s) ... and embracing those that do.

    There have been different views on SPECAL over the years. Why not any other text or doctrine? Else we are in danger of suggesting our loved ones are NOT unique and fall into the trap of not embracing ‘person-centred’ care ourselves. :(

    Karen, x
     
  15. Martine

    Martine Registered User

    Nov 29, 2010
    4
    London
    Sorry Karen, I didn't mean to misquote you. In fact, I think I agree with you, and should have phrased it better.
    I have read Sylvia's thread from start to the present day, and it has been a tremendous help to me. I think if I can cope with the ups, downs of the future half as well as she has, I will have every reason to be proud of myself.
    That's why I was so upset to read her post #107 (I'm not going to try quoting again!). It just seems so unfair that someone who managed so well should now feel guilty. The experts might be right some of the time, but they're not right all of the time. And they are writing in general, not about particular people or situations.
     
  16. Martine

    Martine Registered User

    Nov 29, 2010
    4
    London
    Compassionate Communication

    I think this thread has got a bit diverted, but I'd really like more discussion on the original document on Compassionate Communication which I found really useful.

    The bit I get stuck on is 'going with the flow'. eg. saying the husband will be back for supper, when you are the husband (just not recognised as such). I only tried this once, and found that although it worked in the very short term, my father remembered what I had said, so that, by supper time I was not only a stranger, but one who had lied to him about his daughter. I'm lucky that we get on well, and he is never aggressive, but he was clearly hurt and there was a breakdown in trust.
    Does anyone have more experience of this?

    Also, what is this business about saying "nevertheless" instead of "but"? "Nevertheless" sounds bossy to me...
     
  17. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,749
    Kent
    Hello Martine

    However much I like Compassionate Communication, I do not see it as a set of rules, but as Guide Lines. Even more so since Karen/Tender Face identified conflicting advice from diferent sources.

    So if you are uncomfortable using certain terms, use the ones which feel better to you.

    And if certain approaches don`t work for you, don`t use them.
     
  18. JPG1

    JPG1 Account Closed

    Jul 16, 2008
    3,396
    Hi Martine,

    I found the 'nevertheless' odd too - a word that's seldom used these days, and normally only written as opposed to spoken.

    I think it's a bit of Americanism - the original was written by a member of Alz Soc USA.

    As for 'going with the flow' - everyone's flow is different, so the flow-handling for your relative is almost guaranteed to need to be modified by you. We went through a phase of "where's X - he should be home by now", when X had died about 5 years earlier. At first, it was a gentle reminder that X had in fact died, but then when questions came about whey we hadn't attended his funeral (which we had, of course, but which had been recently 'air-brushed out by dementia'), we slowly realised that we were causing more pain than comfort.

    And that's when the 'diverting the conversation' became useful.

    Try the SPECAL book 'Contented Dementia' by Oliver James from your local library - it may suit you, and you can take from it as much as you feel works for you and your family. You can discard what doesn't work. In the same way that you will get conflicting opinions here on TP, you will be able to pick and choose to suit your own circumstances.

    Wish you well.
     
  19. maryw

    maryw Registered User

    Nov 16, 2008
    3,805
    Surrey
    Just wanted to add some positivity to this thread. I have a very dear and very close friend, whose mother has recently been diagnosed with dementia. She was very loyal, caring and understanding during my own mother's decline and now I am able to repay her kindness a little by giving her support. I copied "compassionate communication" for her and also recommended reading "Contented Dementia" .

    This was a recent reply:

    "Mum is really well settled in at home now and about as happy as she could be. She has full time carers who are kind, cook the food she likes and understand her ways. For instance, she is a compulsive tidier upper and so they just let her do it, but quietly follow her around to make sure she doesn't do anything dangerous.
    Your dementia tips are proving very useful for all of us - thank you.

    And - on the power of music -
    My Mum just loves it when I play her piano for her. She has a couple of music books with very simplified popular pieces eg Waltzes from Sleeping Beauty, Swan Lake and The Nutcracker and the Toreador's Song from Carmen. So now I play them for about 45 minutes every time I go and she hums the melodies aloud! It gives her carer a break and it connects Mum and I without using words. So soothing and healing. So we're all winners."


    Thank you TP - your support goes round and round xx
     
  20. JPG1

    JPG1 Account Closed

    Jul 16, 2008
    3,396
    What more could you ask for, maryw? That news would warm even the coldest heart on a chilly afternoon.


    .
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.