I believe we must change the way we see Alzheimer’s disease and other forms of dementia and the way we interact with people who live with dementia. Why? Because a change in perspective is essential if we are to provide better, more efficient, more effective and most important, more compassionate care that helps people to really live until they die.
I believe we need to look at people who live with dementia as people who still have potential, not as “shells” of their “former selves.” To change our perceptions we need to change our words, our language, our actions and our interactions. I advocate on all fronts.
I understand how many people feel Alzheimer’s disease robs them of their loved ones, and I get how they are devastated by the disease and by loss they experience. But feeling that way does nothing to help people who live with dementia to continue to engage with life and love and the world around them.
Posts and poetry that focus on loss, grief and gloom abound; here are two stanzas from a piece entitled An Alzheimer’s Request:
I’m confused beyond your concept,
I’m sad and sick and lost.
All I know is that I need you,
to be with me at all cost.
Just remember that I need you,
that the best of me is gone.
Please don’t fail to stand beside me,
love me ‘til my life is gone.
Words like these perpetuate the myths we have about Alzheimer’s disease and other dementias and result in people who live with dementia being treated in ways that demean, exclude and isolate them. The words become self-fulfilling prophecies. Everything becomes dark, tragic, and devastatingly sad. But life itself is multi-dimensional. Nothing is all good, or all bad.
In the spirit of balance, I offer a different view inspired by dementia care pioneer Teepa Snow’s GEMS(TM) model. Listen here and/or read below:
Download a PDF of the poem “let me shine”
© Susan Macaulay 2016. I invite you to share the links widely, but please do not reprint or reblog or copy and paste my poems into other social media without my permission. Thank you.
https://myalzheimersstory.com/2017/07/13/confused-not-clueless/
https://myalzheimersstory.com/2017/06/20/the-demented-system/
My Alzheimer's Story 
You may be interested in
http://alzheimersdementiasummit.com/schedule/?inf_contact_key=a901b08af2a831f82cb8c00c0463ee2dc5192a90b8a7d0425313ac91af3664ec
These videos are online for one day, different ones. A lot of their stuff is really good. They are free. Have a look
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As always I 100% support what you say my friend.
Once you become older, people tend to forget the importance of just being there for each other. Despite living a wonderful, long, life, the reality is, old age ain’t for sissies!!! And if you are living with dementia as well, then you have a double whammy of difficulty thrown into the mix. At this time of your life you need compassion, empathy and people around you who know you as a person in your own right.
Who sees the person not the disease!!!
Who can make the journey with you and be a constant, enabling you to have your personhood validated in a world that changes constantly. We have nothing if not a purpose to support each other through this life, together, as one, regardless of our differences. That’s the beauty of this precious gift we have all been given.
PS. Watch “I Remember You” on Vimeo:
Cheers and smiles.
Leah.xx
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Thank you for once again helping us focus on the positive. I’m experiencing a mild form of PTSD every time someone starts whining about all the negatives around dementia… not to mention the anxiety it creates when I think – what if this is me in 20 years? Is everyone going to be discussing me like a dying plant when I’m not in the room? Or worse, even when I am? Not that it matters; in 20 years we will likely have a different scenario in play. For now, for this moment, it’s so important that I give my parents the unconditional love they offered all their children, and focus on the positive in their lives today. One day at a time.
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Brilliant, I have a problem in that I do not currently have dementia or a family member with dementia and therefore do not appreciate what it is like. Therefore I must take a step back and try to appreciate how hard this is. Help, if that sounds crass it is not meant to. Thank you Wynne
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Not at all. I’m sure there will come a day, no doubt one day soon, when you will become more acquainted with dementia and Alzheimer than you might wish to be. In which case, if you follow my blog, you will certainly be at least somewhat equipped to respond in a loving, compassionate, humane way to the person living with the disease. Thank you so much for visiting and for making a comment.
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Where does all this come from not from a dementia sufferer as I do not know what it will be like on a daily basis when I see my wife do how does one know what goes on in the mind of a sufferer.
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Love the poem Susan, it’s brilliant!
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