No-one is voiceless

It was a day of interesting opportunities and challenges having a film crew in my house (sometime earlier this or last year – I can’t remember as I started writing this blog the day after). The denial bubble we prefer to live in disappeared that day, as we had to focus on what it is really like living with, or alongside someone with dementia, which is not always a comfortable place to be.

Anyway, as I started to type this blog (just after the day I refer to above), I was concerned that my ability to type might disappear, as my handwriting has already started to do…

What will become of my ‘voice’ then, how will I find it? My writing is my strongest voice. 

My speaking is also becoming more difficult, especially the ability to find the words and meanings inside my head. Find those words, currently floating inside my head like helium balloons, almost in the ether, words that I once easily used my inner voice to find, is changing. What will happen when I can no longer speak… What then?

As the Honourable Kelly Vincent said recently (I have paraphrased her), and which I am now needing to remind myself daily;

“No-one is voiceless; others have simply not learned to listen”.

During the Dignity Party’s first campaign day earlier this year, Kelly paraphrased everything a woman with severe speech disabilities said, of which I could not understand one word . Quite simply, I had not learnt to listen to someone living with advanced speech disabilities. One of our new DAI members has advanced PPA, and I feel and see her frustration as she struggles to speak, to find words, and is confronted with her own destiny.  It is awesome to watch her wanting to ‘fight for her life’, but also gruelling and very personally challenging to see what is ahead.

A few months ago I also spent time with a woman living in an aged care facility with MS, who feels she has lost her voice. Not in the literal sense, as she can still speak, and I could understand her, but since she has been living in aged care, others speak over her, for her, or even about her, and most of the time, also in front of her.

She listened to my presentation about empowering others with dementia to find their voice, and to reclaim their pre diagnosis lives as much as possible, even those living in care facilities. She heard me talk about the human rights issues of younger people having no option of anything other than aged care when they need residential care, and how we would never admit children into an adult or geriatric ward in a hospital. She cried and then we both cried together. We talked about her sons, who feel the distress of their mother living in a home for ‘old people’, and I then shared my fears as a mother with young adult sons. It was, and is a distressing thought.

She asked me how I thought she could reclaim her voice and I suggested a sign or placard, that she could hold up to others: “Speak to me!” 

I used that as  a sign for my neurologist once, as after dementia, he had stopped  talking to me, or even looking at me. It definitely worked!
And even as I finalise this blog, most of which has taken months to write, I continue to be concerned that my typing skills might disappear, as my hand writing and many others skills are fading… How will I find my voice then?

It’s too hard to think about for very long, so I’m heading back into my denial bubble for a few days! 

39 thoughts on “No-one is voiceless

  1. Great read as usual Kate! It is such an important message – and one everyone needs reminding about (again and again)

    I would love to use your (attributed) paraphrasing of the Hon Kelly Vincent’s quote in some talks I give about the work we are doing in developing tech with people with dementia to support communication with their conversation partners – if you both were happy with that. If you feel ok with that, I am happy to then check with Kelly (?via twitter) – Thanks!

    • Hi Kacki, I have not doubt Kelly will be fine with it, and I am certainly ok with it too. Im gogn to write a blog soon, about how I could understand someone with the same dementia as me, albeit more advanced, that almost noone else could understand. It was enlightening, and showed me personally how it really is true that “no-one is voicelss, we all just have to learn to listen”.

      • Thanks so much Kate. I look forward to that blog too! We are learning a lot from our lived experience experts and our participants in terms of what works and what doesn’t work when words or memories “get stuck” and how people keep communicating even when it difficult.

      • I’ve been fascinated that I can much more easily understand someone with a more advanced dementia of the same type as me. Perhaps as the ‘disAbilities’ are in common, it is easier, or maybe I’ve had a lot more practice these last few years setting up and running DAI?

  2. I honestly want an ‘abc’ guide on what WordPress is all about. Or let me put it like I want help to work here. So much I have inside pleading to let out but it seems… And not much space to speak publicly for now.

  3. “How will I find my voice then?”

    My mom says:

    1) There’s no point in worrying about the future now. The main thing is to keep going: http://myalzheimersstory.com/2014/09/07/the-main-thing-is-to-keep-going/

    2) Everyone goes through rough patches; finding our way through them may be one of the reasons we’re here: http://myalzheimersstory.com/2015/08/30/we-all-go-through-rough-patches-heres-one-thing-that-helps-us-get-to-the-other-side/

    And I say:

    3) If and when the time comes, your voice will be heard through those who love you, just as my mother’s voice is heard through me.

    Anything else you want answered, just let me know 😛

    XOX

  4. I have receptive and expressive aphasia . I see an advanced geropsychologist once a month. Diagnosis is pending and ongoing. We all Gore is not dementia. I’m in legal proceedings. My matter is complex. I’m not getting the support Anna therefore the right to equal protection under the law. The is a standard form to fill out at the beginning of engaging as self representing person. It asks if I have any condition that effects My ability to self represent.yes I wrote and gave my condition. Then it also asks if I need an interpreter.well, yes, just not in the way they understand it.so my legal voice is muddled. Imagine self representing in a complex legal matter with no legal background and a diagnosed significant difficulty to perform administrative tasks!!! Not to mention a clinically significant deficit in working memory. I struggling.

  5. I particularly like the quote, “no one is voiceless, others have simply not learned to listen”. I have learned to to give people plenty of time to get words together and say them without me trying to say pre-empt what the person is going to say.

  6. Thank you doll for voicing your deepest fears. You will find other ways of expressing yourself, you won’t be “locked in” because we won’t let that happen.

    As you know, we have 2 people living with PPA in our group, one with literally no voice & the other who often switches off from conversations that she can’t follow. I have caught each of them with tears in their eyes, even amongst a group of friends who “get it”….when everyone is talking they both know that they can’t participate as they’d like. It brings the rest of us up short, as it should.

    But when we DO things together, all is different, please remember that.

    Also, your work, your writing are part of history. You will be quoted, people will hear your voice via video, read your poetry. People still contact V from decades back, finding her on YouTube or Google. Her body of work also still stands.

    I know I will always be able to “read” your eyes, your body language, as I know it to be true for V. My late partner Betty showed me that even with 80% of her brain destroyed, she remained herself, and made herself heard, to the end. So will you. All our love to you, sista, always (you Adelaide girls have “grit”😉). ❤❤

  7. Endorsing Jennie Russell’s comments – to stay in & make the most of the present. As Jesus once said, do not worry about tomorrow for tomorrow will have enough troubles of its own

  8. Yes, Kate
    We end up talking to ourselves, (inside our head) – because what we have to articulate is preassessed, as not being worth the time it takes to listen. What is being assessed is our disease, the stumbling, the struggle to find the words – and not the knowledge and wisdom that the mind may still contain.
    Thank you Kate for the struggle you take to say those words we need to be told. Gratefully, Judy

  9. Kate, You make me ache as only memories now of the difficult times with Gregory do and that is good. The ache is a reminder of how fragile life is and how important compassion and love and today are. And doing for others and how important that is at very little cost. Thank you Kate. Michael

  10. Kate, you have touched and inspired so many people living with dementia through your books, blogs and speeches. I think it is important to live in the moment and appreciate what skills we do still have. I also frequently “forget” that I have dementia even though it has been five years since my diagnosis, and I have lost the ability to drive, cook, read exciting novels and handle change. I don’t think denial is at all bad. I stay living in the moment and frequently find myself telling others that I’m doing well. I have made accommodations for my disabilities, and I believe that is the key. It no longer bothers me that I have dementia because I am “living through it”, and I believe you are doing the same. Best wishes as you continue to inspire others.

  11. I too would put that thought behind me and live for the present, otherwise the ‘here and now’ is wasted worrying and that is not beneficial or conducive to living your life.
    When my father was in the Home for the last weeks of his life, I saw exactly that as the visiting medics talked to me rather than to him, some of the Care workers talked about him as if he was not there and he had full mental capacity until the last couple of days. It was horrid!
    Continue the way you are Kate, and fight every negative as much as you are able.
    Always on your side 🙂

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