The value of ‘it’

three stooges 840 x 240Just for something different (!?), I am going to once again discuss the topic of being a care partner of a person with dementia, of which there are more women than men, and the reality that the person living with someone who is diagnosed with dementia, is not living with dementia, but instead they are living with someone diagnosed and living with dementia.

Perhaps I have changed my thinking on this…

There is often an almost angry refusal by many care partners to accept they do not live with dementia, in the sense of being diagnosed with dementia and knowing what it is like to live with it. The continuing reference by carers that they are ‘living with dementia, is also referred to in this blog, which has shifted my thinking on this topic, and which says:

My mum, 88, is now in residential care. She has dementia; we have both lived with it for many years… 

This daughter is not saying she is living with dementia, she is saying they have both lived with ‘it‘ for many years.

There is a subtle difference, as if you think of dementia as we do in my house, and that ‘it‘ is the third person in the threesome, it could be seen as us both living with ‘it‘. And we call this third person (dementia), this sometimes offensive, and annoying, and troublesome threesome the Three Stooges, and have even named ‘it‘, Larry!

It sounds more acceptable than the family carers who insist they are living with dementia themselves, even though they are carers, and not the person diagnosed. Stated this way, they cannot be living with dementia as they do not have it. But they are living with ‘it‘, albeit as care partners and not diagnosed with ‘it‘.

So, on the topic of language, I am, as I imagine everyone is, learning more and seeing things differently almost every day. Although I still believe, unless you have dementia, you do not know what it is like to live with it, in the same way, unless you have been through childbirth, you do not know what that is like either.

Perhaps this blog should be called The Value of The Three Stooges? 

Author: Kate Swaffer © 2015

18 thoughts on “The value of ‘it’

  1. Thank you for allowing me to read your blog – I have also listened to you on the Wicking MOOC and you have broken down some of the fear I have had in either contracting the disease or being a care partner.

  2. Hi Kate, I was wondering if you have heard of the Contented Dementia Trust in the UK. They seem to practice along the lines of Dementia being a disabilty and offer contructive traing for both paid and unpaid carers. I would be interested to hear what you think about it.

    • Hi Julie, I have heard of them, but don’t know a lot about them, so cannot really comment. I’ve had a look at them previously, and yes, they look to be a reasonable site, more positive than many, but in reality I cannot comment as have no direct experience with their service, support or resources.

  3. I am skimming, short of time, but I just wanted to thank you both for being there and you honesty. Hoping to move things on here in the next half hour. So be back to you both later.

  4. Yes, Kate, It’s about living with the presence of dementia regardless of who has it (which, as you say, is a personal experience). As you refer to the 3 stooges I often refer to Princess Dana in her famous interview on the BBC when she said ‘there were 3 people in this marriage’ – far be it from me to say that Camilla Parker Bowles is like the dementia .!- she too was a 3rd party within that relationship that was driving a wedge of division that could not be ignored. you make a sound point as ever – best regards, Damian

      • Of course!! Reflection is a wonderful thing.
        I love hearing other people’s perspectives (as in, the lady who says she also lives with “it” as her mother had been diagnosed) and pondering further on the impact of discourse. I, like you, believe that only the individual living with dementia knows about the lived experience, however others (without dementia) also have a lived experience of “it” which should not be undervalued. This is confusing to find the right words for!
        Love your blog x

  5. So Kate, I do agree that a care giver does not experience the same as the person diagnosed with dementia, but I also agree that the loved one going along on this journey with the person with dementia has a much changed life as a result. It is very difficult for both on this journey, and not all people living with dementia have your intellect, drive, and writing ability. Happy for you, wishing my loved one had more of your gumption. All the best, Sara

  6. Wow. What a thought provoker. I hate you for my having to sit down and think about this and clarify my thoughts 🙂 I often have said that Gregory and I are living with Dementia/ Alzheimer’s. I have also referred to: “Living with and loving someone with dementia.”

    Yes, I will never know what Gregory really went through, experienced, thought about, feared, etc. Also, Gregory was never really able to verbally share that with me through the protective buffer that the Dementia/ Alzheimer’s placed between his inside and his outside world.

    But in our strong strong relationship; during the forty years of which we always discussed, shared, negotiated, evaluated and re-evaluated roles, and more; as I watched his decline, saw his abilities diminish and eventually disappear; as we worked together with love and respect to support each other; as I tried my best not underestimate or prematurely suggest or force his disengagement from the activities of life … wow that is a dense sentence … I would have to say that both of WERE LIVING WITH DEMENTIA! When you so truly and strongly love love someone, how can you separate who is who? Semantics maybe, but hard at least for me to separate! Gregory and I lived with dementia. Kate, with respect to you 🙂

    Let me reflect on your third party “it” with a poem of mine:

    Would I be insulting your intelligence to tell you that Ménage à trois is a French term which originally described a domestic arrangement, in which three people having sexual relations occupy the same household? The phrase literally translates as “household of three.” This poem is called:

    MÉNAGE Á TROIS
    By Michael A. Horvich

    Over twenty five years and their relationship was as strong as ever,
    Their love continuing to grow, change, and adjust to the times.
    Same sex love was not fashionable when they first met in the 70’s.
    It was known as “the love that dare not speak its name.”

    Most churches will not recognize nor bless their love, their union.
    Slowly society has acknowledged it out loud but for the most part still in whispers.
    Each partner was very much unlike the other.
    He was tall and he was short. He was fair and he was dark.

    He was slender and he was bulky.
    He was a recovering Catholic. He was a recovering Jew.
    He was calm, thoughtful, and orderly.
    He was animated, impulsive, and random.

    Often he described him as a “stick” meaning hard, formed, and inflexible.
    In turn, he described him as a “sponge” meaning soft, malleable, absorbing.
    Over time the stick became more sponge-like
    And the sponge became more stick-like.

    One day, twelve years ago, uninvited and unannounced,
    Unasked, a third partner joined the relationship.
    Alzheimer’s does not discriminate against same sex relationships,
    Nor seek permission to join the party.

    So it became a ménage à trois.
    Three entities occupying the same household.
    Now, he is becoming less, and he is having to become more.
    Now he has difficulty communicating, and he has to tell both of their stories.

    Slowly while he has been becoming the back partner in this ménage à trios
    And while he has been becoming the forward partner …
    Alzheimer’s is becoming the dominant partner.

    (RIP Gregory L. Maire October 4, 2015)

    http://mhorvichcares.blogspot.com

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