My mother was strong, courageous and determined. She was a fighter. She was an inspiration. She was beautiful.
Some people are offended by what they judge to be inappropriate pictures and videos I post of my mother online – images of her looking battered and bruised, drugged and zombie-like, or in undignified circumstances or situations. They say it’s disrespectful for me to make public what they deem should be private.
If people are offended by the images, imagine how sickened I was seeing the real thing day after day for several years. Worse, imagine how I felt being powerless to stop it. No wonder I experienced post-traumatic stress after Mom died.
I don’t post what I saw and heard lightly, I do it with a clear purpose: to give meaning to the ill-treatment Mom received, which she didn’t deserve, which should never have occurred, and which would not have happened if I had been in control of her care.
For the record, here are seven specific reasons I share the ugliness I witnessed:
1 ) To increase awareness
People are unaware for the most part about what really goes on in long term care facilities in Canada and around the world, because neglect and abuse, particularly of vulnerable people such as those living with dementia remain hidden and unreported by friends and family, and by facility staff. It’s time elder neglect and abuse were brought out in the open.
2 ) To break the silence
People whose loved ones are still in institutions where they are being neglected and abused are often silenced out of fear of worsening the situations of the people they love, just as I was when Mom was alive. Now that she’s gone, I’m free to show how poorly some people living in institutions are really treated.
3 ) To spur people into action
Photographs, and video and audio recordings are powerful ways of getting messages across. When people see real people endure real suffering, they are more likely to actually DO something about it. And when they realize that the people they love and potentially they themselves are at risk, the chances they will take action further increase.
4 ) To honour my mother’s experience
My mom fought for what she believed was right, and she wasn’t afraid to stand up and make her voice heard. I am my mother’s daughter and I’m also not afraid to fight for what I believe is right in an effort to create change and make the world a better place for everyone. If that means sharing the ugliness of neglect and abuse, I will do it, because in this case at least, the ends justify the means.
5 ) To expose the problem
Sweeping all of this under the carpet does no one any good – least of all vulnerable people who currently reside in long-term care. If we don’t take a good hard look at the reality of what happens in these kinds of institutions, we’re going to be in big trouble not far down the line. And by “we” I mean anyone who is over the age of 20 right now. Because everyone will be impacted. Either: they will need to be cared for, they will be caring for someone, or they will be dependent on someone who is caring for someone else.
6 ) To encourage others to share their stories
Sometimes we’re afraid to share our experiences because we think we are alone, that what has happened or is happening is an aberration, an exception. By sharing my story and Mom’s story in a truthful, real and authentic way, I hope to encourage others to do the same, thus further increasing awareness, breaking the silence, shocking people into action, honouring the experiences of the people we love, and exposing the problem.
7 ) To implement Mom’s good advice
In the spring and summer of 2009, there were protests in the streets of Iran. The government arrested, imprisoned and tortured its own citizens. I asked Mom, who was living with the “early stages” of Alzheimer disease at the time, what she thought about what was going on. I created a series of short videos using clips from our conversation. It strikes me that the wisdom she shared then applies to all kinds of situations, including our broken dementia care system, and, in an eerie kind of foreshadowing, mirrors some of the points I’ve made above. Essentially, she said: 1) band together and create a revolution; 2) live like normal human beings and 3) rethink what you’re doing.
Here are the short videos:
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