The last time I spoke with my grandmother, she couldn’t remember my (soon-to-be ex) wife’s name, even though they had known each other for the ten years previous.
Like most people, I wanted to chalk it up to her advancing years. After all, it’s what naturally happens when we get older, right? I was loath to put a specific label on it, especially one that carries a negative connotation to it, like dementia. However, the realist in me was forced to accept that that’s exactly what it was (dementia is not a specific disease – it’s an overall term that describes a wide range of symptoms associated with a decline in memory or other thinking skills severe enough to reduce a person’s ability to perform everyday activities).
So, when my oldest friend, Andi, asked me if I wanted to get involved with McCormick Care Foundation’s upcoming “Perfection in Perspective” event, I jumped on board. But, before I stopped in to speak to the program’s Director about the details, I thought I’d do a little research first.
And that’s where I had my eyes opened a little bit further.
My aim was to find comprehensive information on what it was like to live with dementia, so I could better understand the impact on the individuals affected and their families. While the clinical details are available online, the information regarding the reality of dementia is somewhat harder to find. I stuck with it, though, and pieces of real life experiences starting filtering in…
“My mum can no longer do anything for herself. She needs someone to get her dressed and out of bed, feed her, remind her to swallow when she’s eating or drinking, brush her teeth, wash her hair, change her and push her wheelchair. She was diagnosed at just 59.”
“I miss our relationship, and even though after four years I’ve finally accepted I’m not going to get that back…”
“She eventually couldn’t walk, couldn’t talk, and couldn’t feed herself. In fact, she couldn’t do anything at all.”
“When I am in a group now, I simply cannot keep up, so responding or joining in is difficult as I can’t work out what everyone is saying. It makes me feel lonely and isolated, even though I’m with friends. Oh and also humiliated and embarrassed.”
“So as I explored further how it feels to have dementia, I think it boils down to a few constantly recurring feelings – confusion – frustration – humiliation – embarrassment – loneliness – isolation –anger or irritation (which can lead to denial) – a deep sadness – and last but not least, worry, because I am constantly faced with an ever changing playing field, never knowing what function is going to become impaired or lost tomorrow.”
“I no longer cook nor tidy up the house like I used to. And I am no longer comfortable taking my grandchildren to school since I am worried that I might get lost. I find that I prefer to stay home more and more. It’s sad but I feel that I can’t lose heart and that I must simply carry on as best as I can.”
In digging up these first-hand accounts, I came to realise two very important things:
The first is that dementia is ubiquitous – the stories I found were from all over the world but came from no singularly identifiable group of people. That means that the condition is a fully human problem. Secondly, it wasn’t as easy to research the true impact – the experiential reality of dementia – as I first thought it would be. It’s as if we collectively recognise its existence but don’t dare talk about it openly for fear of summoning that particular devil… which makes programs like McCormick Dementia Services’s art therapy initiative so very vital.
Art therapy is offered to the clients of McCormick Dementia Services with dementia, a program that is fully funded by the McCormick Care Foundation (the Foundation receives no government funding and relies solely on donations alone). As Art Therapist Emily McIntosh describes it “art therapy is a form of psychotherapy where a person expresses an emotion through the creation of art”. In addition to studies showing that engaging in meaningful, creative activity enhances sense of well-being, their clients are remembering details that they want to add to their artwork weeks later.
All-in-all, it’s a meaningful and worthwhile program with significant benefits, and one that I’m excited to experience.
“Perfection in Perspective” will showcase the client art created in the program and allow guests to interact with both the art and the artists who created it. Hosted at McCormick Dementia Services on Sunday, November 19, 2017, between 1 pm and 4 pm, the public is invited to come and share in the excitement of this developing initiative.
And, hopefully, we’ll see you there.