Who am I?

who am iIt is Dementia Awareness Week in the UK this week, and because of this, I am publishing each day this week on the Dementia Alliance International blog. Todays blog there is a review of the recent ADI2015 conference in Perth.

But here today, on my own blog, I am sharing what it is like when others say they are feeling like they have lost us, or that dementia is “stealing us away”, and we are not the people they once knew. My thoughts on this have been in part, inspired by the words in as Kay Branford’s blog below, an online friend and fellow blogger, who writes as a family supporter of parents with dementia. We once shared and answered each others questions on The Dementia Dialogue.

In, Missing the Mom That’s Sitting Beside Me, Kay wrote:

“My mom was a very good piano player. At one point in my life, our basement held two piano’s and my parent’s would spend the evening playing duets. When I was in middle school, my mom was the church organist. She stopped playing the keyboard in her apartment a year ago and doesn’t remember being a piano player anymore…

And the final sentence: I recognize it as the new normal for us, but also am reminded of all we both have lost as dementia steals away my mom. Reflected.

It is easy to feel a sense of an identity crisis when you have dementia, as generally speaking, others often only see the dementia, and not the whole person. They miss the ME in DeMEntia completely. Whilst I have been diagnosed with younger onset dementia, and I am changing.

I am still me.

So how does it feel when people say dementia steals away who we are?

For me, it feels very uncomfortable, and vaguely dehumanising. Yes, there are so many things I can no longer do, but I am still me, I am still here, and no-one, not even dementia is stealing me away. There are also things I can still do albeit many of them differently, as well as having developed some new creative talents, perhaps even brought on by the type of dementia it is that I have been diagnosed with. But dementia is not stealing me away.

It seems to me, and I am sure according to CSI [sic] I probably still have the same fingerprint, and I am always, always, still here and still me.

Sure, maybe I am not the type of mum I used to be, or wife, and my husband and sons have had to take on more responsibilities and change the ways they communicate with me, but I am still me. Yes, my friendships have changed and my abilities are different. I have now, many disAbilities, and I do really miss things like the knowledge I had about the human body, music and art. I really miss my memory. My boys miss me being a walking telephone directory. But, I am still here, and have not been stolen away.

I started wearing reading glasses years ago, and you could say someone (old age!) is stealing  my eyesight. But, they are not stealing me, only my ability to read without glasses.

Although I am still me, I do very much miss the old me at least as much, if not more than the way Kay misses the woman her mum used to be.

As John Sandblom, a friend and DAI colleague said, over twelve months ago:

“We are just changing in ways the rest of you aren’t…”

15 thoughts on “Who am I?

  1. Pingback: "Nothing about us, without us" - Dementia Alliance International

  2. Kate, I have never been comfortable with this whole idea of loss either. My journey with Mom, while challenging, has also been healing and enriching for both of us.

    I am in the process of becoming a certified Positive Approach to Care trainer with the amazing Teepa Snow who I understand will be in Australia next month.

    I love her GEMS(TM) model to help see the people with dementia in a different and more positive way. I blogged about it a few days ago: http://myalzheimersstory.com/2015/05/15/6-gems-outshine-every-stage-from-the-inside-out/

    People change in multiple ways during a lifetime; this is another way…

    Thanks as always for your advocacy and good work.

  3. Yeah, daughters (in particular) would say to me “This isn’t my mother, you’d have loved my mother”. I’d say “Yes she is, & your mother’s lovely.” That’s where most communication started. Over time daughters would find their mothers again & we’d all share one another’s company with better understanding of each other’s perspectives & some pretty humanly rich times. (You can imagine.)

    I have some wonderful memories as a result of working long-term with people with acquired head injuries & then people with dementia (& their relatives) despite some heart-breaking circumstances at some milestone-ish times.

    I know the word ‘suffering’ gets your goat. The phrase ‘the long good-bye’ gets my herd!
    Cheers Kate
    De

  4. Very well said, Kate.
    We are all constantly changing & nobody would want it any other way. My baby girl is now a beautiful 40 year old woman with an amazing teenage daughter. We have very different lives to even a few years ago, before my husband had a stroke. But still the same people . . .
    And YOU will ALWAYS be YOU!

    Judy x

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