wings and things

Dementia dialogues 2

on March 24, 2015

My last post raises the question “but how can you listen to someone with dementia who is either incoherent or totally silent?”

There are two particularly talkative women in the dementia house where I work. One of them fluctuates between English and her first language but, regardless of what language she is speaking, her monologues are extremely difficult to understand.

The other woman, who is bedridden now, is so talkative that it is difficult to give her food or drinks because her monologue can be unceasing, but, interestingly, when she loses the thread of what she is saying, she hums a tune. Here is an example:

“And I said to him, said to him, you go go go to the shop and … humming … And there is, is, is a … humming … (takes a mouthful of food) … Oh that’s good, and he said to me that it’s, it’s, it’s a one, two, two, two … humming … What on earth are you do-doing? It’s a very nice dress … humming … chuckling … Oh no, damn … chuckling (takes a mouthful of food) … You shouldn’t, shouldn’t do that … humming … How dare you! I’ll have to, have to do, do, do that … chuckling ….” And on and on this goes.

In my ‘shut up and listen’ mode there are all sorts of nonverbal ways of validating that what these two women are saying is important. I can nod, smile, laugh, hug, hold hands, shake my head and I can pretend to understand. And the ‘shut up and listen’ mode doesn’t mean you can’t say anything at all of course; it just means that you give the person with dementia the floor so to speak. I’ve found recently that one-word responses on my part are much more effective than attempts at coherent conversations. Exclamatory words seem to be particularly successful in eliciting smiles, laughter, pleasure. “Yes!” and “What?” and “Really?” and “Amazing!” and “Thankyou!” and “Please!” – accompanied always with suitable facial expressions – can be a gift to those with dementia who are talkative.

But what about those people for whom speech has become difficult (e.g. Anthony) or even non-existent? This is very difficult because, unless you are psychic, you cannot possibly know what that person might have said/wants to say/feels like saying but can’t. How do you listen to utter silence?

To be continued when I figure that last question out!

45 responses to “Dementia dialogues 2

  1. Good question…. I guess in that case you have to do the talking…. It’s harder I guess with people who you don’t know well…. I used to just carry on talking to my mother… and often answer as well… ” Oh, I wonder what you’d like to watch today…. well I think you’d like such and such”… or I bet you’d like to know what I’ve been up to lately etc etc… but like I said easier when it’s someone you know…. hope you figure it out… sorry Julie… Diane

    • jmgoyder says:

      I’m beginning to thing it’s a matter of developing a repertoire of words and phrases and even jokey stuff. Mostly I feel very unsure because on one day something might work well and then the next it is a disaster.

  2. susanpoozan says:

    How perceptive you are.

    • jmgoyder says:

      I am learning so much from working in the dementia house and trying to come up with better ways of communicating. It’s fascinating and challenging and sometimes very sad, but it is like gold when various of the women smile, laugh, cackle and/or hug me. This is the most beautiful job I have ever had.

  3. ksbeth says:

    i have found that you must then talk to them, but be careful not to talk ‘at’ them, simply offer them a bit of conversation, tell them about the weather, your day, your family. they enjoy the stories. rather than sit in silence all day.

  4. I sat in a room last week with a woman like your speaker/hummer. She would randomly laugh and seemed to elicit laughs from us as if she had just told the most wonderful story. She was infectious. Like you, I would worry about what isn’t being said by those who want to speak can’t. I worked in a nursing home MANY years ago in house keeping, a woman was bedridden, a younger woman, because of a disease. She was truly trapped. No communication. I always felt like I was intruding on her space because she could not give me permission or deny me being there…..I felt I was being rude not being able to hear what she wished she could say…..

  5. Terry says:

    You are doing a good service for those reading your posts on how to react to this disease. I remember when Al could no longer speak those last couple months. It was a guessing game always. One thing that helped me was memorizing his routine. Then most times I could guess what he was trying to say. It may be food and then it was a guessing game of what he wanted to eat, but at least I was in the right area. Today Al has been gone 1 year

    • jmgoyder says:

      I have been out for much of the day but have been thinking about this anniversary of Al’s death and how it must be affecting you. You, Terry, are an incredible example of what caring is all about and I have learned so much from you. Love you and a million hugs for Al.

  6. bulldog says:

    Your story makes me think of my Great Aunt who spent her life looking after either a boarding school house or employed to look after Downs syndrome children… she was an absolute Angel who never married and lived to the age of 99 still looking after a section of the old age home she stayed in…. You are growing wings Julie and becoming that Angel that so many appreciate without ever saying so… So I say it for them… My Aunt would often be down on her knees playing with kids at their games when she was still in her 80 s… she loved to repeat some of the conversations that the kids had, which unfortunately only she could understand… an Angel… just like you…

    • jmgoyder says:

      What a wonderful Great Aunt – she sounds like someone spectacular and certainly an Angel. I’m not, Bulldog but you pay me an enormous compliment here so many thanks xxx

  7. If I were listening to total silence, I would hold their hand if that were okay with them. Wow, there is a lot to think about when it comes to caregiving to others. Hugs Jules 🙂

  8. I think you are wonderful, the care that you are providing and listening to them, even when they may have nothing to say.

  9. I am finding this series of posts very interesting–you are one smart cookie–thank you for sharing your experiences………….

  10. Rhonda says:

    The ones who cannot communicate verbally…please forgive the ignorance here…but are they able to do so otherwise? Able to hold a pencil or a piece of chalk, for sketching or doodling? Just a thought…if not, does music ever come into the picture? Again, just wondering. I love these posts and love what this experience has done, and is doing, for you Jules.

    • jmgoyder says:

      Yes, we do/facilitate these kinds of activities but I have come to realise lately that even doodling or colouring is beyond the capabilities of many of these beautiful women. The most successful activity has been folding; I have brought all my old towels in and it keeps two of the women occupied and happy and useful for a good hour.

  11. magicallymad says:

    I found, when working with the severely retarded, that touch was a great way to communicate. Kudos to you for what you do!

  12. Good question. I suppose there are those times when the body, the energy, the expressions clue one to what’s appropriate to do or utter that can be calming, or stimulating, or whatever. It’s a different way of relating/communicating than we’re conditioned to. I sometimes wonder if we’re in communication over this distance, and the same with some other blogger friends, there’s an energy, a comfort, a familiarity that’s inexplicable but somehow my heart knows and senses a friend, a good person. Love to you, Paulette

  13. janeslog says:

    The main thing is trying to find out what their capabilities are and trying to expand on them. It can be painting, jigsaws etc.

    I remember going with my Salvation Army neighbour to visit a relative in a nursing home. She didn’t want to go herself and needed company to cope with the visit. Her relation was fine – she had a new friend who was her best buddy and the two of them talked away to each other in their own language.This was a great comfort to my neighbour.

    Another resident had been a concert pianist and played the piano in the nursing home. She was also happy when playing her piano.

    I came to the conclusion that although we see dementia as a terrible thing, some sufferers are oblivious to their condition and get along fine in their own wee world.

    Some, however are very agitated and it is for them I worry most about.

  14. A year ago when I flew back home and visited Mum in the nursing home, I observed one of her roommates who would sound very much like the quotations above. On and on she could ramble no-stop. She would talk about things that seemed to be reliving abuse, and that was disturbing because you can’t be sure it is real. The constant jabber over the constant country music station o her radio made the listening of my mum very hard. I confess I was not too ready to listen to the other lady. You must have a lot of patience.

  15. Amy says:

    I found that with a certain population of my patients the best response is one or two words, because a lot of times they are just wanting to be heard. It is wonderful that you are so thoughtful about it and take the time to really figure out what works for each individual. As caregivers that can be the most difficult part of what we do.

  16. Yeah it may not be easy to shut up and listen but when we do we may get a lot back

  17. Vicki says:

    I long for people to ‘be silent’ and stop chattering away 😀

    If people can’t talk, one should cultivate the art of a soft smile and positive thoughts about the person and/or the day/walk etc.

    Just being with someone (carer) who exudes warmth and loving kindness is a blessing and I’m sure the silent patients instinctively feel that warmth & positivity entering their soul.

  18. listening to silence is a very difficult question. i can’t wait to read the answer. if anyone can figure this out it is you. i have experienced the exclamations and exaggerated faces to encourage patients to speak. as a therapist when a patient is silent i sit silently with them. i am guessing that is not the answer here. i can only say i feel you are going to be a positive influence whatever you do.

  19. Listening is a skill you seem to be using well. Not everyone can avoid the many pitfalls when talking with a dementia patient. I’ve heard nurses yelling at patients, correcting them, giving them long explanations, even arguing. Each time I saw it, it made me angry. I figured nurses should know better .You should teach a class in the special care of dementia patients.

  20. Let us know if you decide to take it. You’d be perfect, if it’s what you want to do.

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