Advocacy, Antipsychotic drugs, Life & Living, Memories, Real life

the shame belongs to someone else

A friend took the picture above of Mom and I on August 16, 2009, a couple of years after Mom was found to have Alzheimer disease. At the time, Mom still lived on her own, with her cat Pia Roma, in the big red brick house on the hill. It would be another two years before I moved back to Canada permanently to take care of her.

When the pic came up as a memory prompt on Facebook a year and a week after Mom died, I re-shared it because we are so beautiful and joyful in that moment. That post elicited this comment from Diane (not her real name), a FB friend who had known Mom when they were both active in the ladies local golf “circuit:”

“Susan, this is a beautiful photo of your mom (and you), and it is how I want to remember her and probably how she wants to be remembered. She was such a gracious and elegant lady!”

I’m sure Diane’s intentions were good, but her comment raised my hackles. What right does she have to weigh in on what I choose to share or not about my mom? 

Diane followed with an email:

“Susan, the main reason I wrote is also that your mom was so proud and self-conscious of her looks, always ‘coquette’, was always beautifully turned out, but when I look at some of the photos you shared on FB when her Alzheimer Is advanced, not much life in her soft eyes, then sometimes the ones where she is bruised, I think to myself, this is not something she would have wanted shared or people to view her like that.”

My hackles rose even further. I took a bunch of deep breaths, and composed an email in reply.

I wrote about how Mom was there when I was born, and how I was there when she died. I knew her for 60 years; she was my mother. I knew her better than anyone. I didn’t just see her style, grace, pride, pizazz and ferocity every now and again, I experienced it for decades. She taught me how to be in the world. I lived inside her for nine months. She still lives inside me.

I wrote about how I struggled for a long time trying to decide whether or not to post “ugly” images of Mom on my blog. She wasn’t one to air her dirty laundry in public. Hell, she didn’t tell me my father had tried to commit suicide until four months after the fact, and she never told her closest friends.

I wrote that, on the other hand, Mom was a fighter. If she believed something was wrong, she was a pit bull, an effective organizer, and a relentless advocate. She made her voice heard, she wasn’t afraid of anyone, and she didn’t give up. And she was always especially kind to the elderly.

I wrote that after months of soul searching, I decided it was more important for the truth to be known than it was to worry about appearances.

Then I didn’t send the email.

Because Diane is right.

Every time I post an “ugly” picture, I feel sad and torn. Sometimes I feel like I’m going to be sick. It’s hard every single time because it’s true, Mom probably wouldn’t want to be remembered like that. And I don’t want to remember seeing her that way, the way she is in the ugly pictures and videos. I don’t want to remember not being able to do anything to make it better. To bear witness to what happened to her every day was excruciatingly painful. Each time I post a picture or a video or a conversation, I feel that pain. Lots of times I weep.

Yes it’s true, Mom probably wouldn’t want to be remembered like that. Nor would she have wanted to live the way she was forced to live for the last four years of her life. She hated taking drugs. She loved to be on the move. It was cruel and inhumane to chemically and physically restrain her. She didn’t deserve the treatment she got, and neither do hundreds of thousands of others who endure the same and worse.

It’s important that the public be made aware of what occurs much more frequently than people think in hospital wards, long-term care facilities, and behind the locked doors of memory care units. I want everyone to see the reality of what happened to my mother, difficult though it is for me to share it. Because this should not happen to vulnerable elderly people. It’s just plain wrong.

Alzheimer disease did not cause the lack of expression on my mother’s face or the bruises on her body; the antipsychotic medications she was given did. Drugs she was inappropriately prescribed for behaviour that was a response to unmet needs, the environment she lived in, and the way improperly trained staff approached her produced the ugliness I captured in pictures and audio/video recordings.

I was powerless to change Mom’s situation, and it’s too late to help her now; she’s gone.

But it’s not too late to help others, and ultimately it’s also not too late to help my future self should I also develop dementia and require care. I post the ugliness I would really rather not share because sweeping it under the carpet would dishonour my mother more than showing the truth of what happened to her does.

The shame of her bruised face and vacant eyes belongs to those who sedated her with drugs and neglected her care. Dementia was not to blame. And the shame doesn’t belong to her. Or to me.

If she were here to advise me, Mom would tell me to do what I believe is right, and not to pay attention to what people think or say.

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8 thoughts on “the shame belongs to someone else”

  1. It takes courage to be amazing. Everybody wants to “talk the talk,” and only a few (like you) have the courage to stick to the main message. As a society, we’re so focused on image and superficial values that we rarely take a peek behind the curtain. Mindlessness (a very deliberate or ignorant turning away from reality) has become an epidemic. We rush through life seeking instant gratification, and pushing any ugly images and thoughts out of the way, including people and situations who don’t fit our idea of “perfection” or “success.” It’s incredibly harmful in the long run, as some eastern philosophies have known for millennia.

    I never met your Mom, Susan, but I have a sense that any mother would be proud to be honoured in the ways that you have chosen to honour the memory of yours. You are changing the world, the way we see and communicate with seniors, and with each other. That’s monumental.

    For all those people who just want the pretty pictures, let’s remind each other that of the power of images – from a bruised, neglected senior to the body of the refugee child lying on a beach. When people are sleeping in their smug contented worlds, it takes a shock to wake them up.


  2. Thank you for sharing the bad along with the good. That picture of you Mom is indeed stressful to look at but am so glad you posted it. Why? Because we must not hide the ugly facts. Only by people being totally aware and making complaints will things change. My husband has Alzheimer’s and I have fought from the very beginning to keep the medications to a minimum . At least the medicaltions that are to correct Behaviour problems. The problems as I see it are usually caused not by the disease but by boredom and by improper treatment or lack of . I firmly believe our loved one are much more aware of what is going on that we are led to believe. I find my husband to be very perceptive to other people , their moods etc. I believe also that the workers are not given enough time to do their job properly, nor are they all fully trained in how to handle what they call behaviour problems. Thanks again for sharing the good the bad and the ugly.


  3. You’ve said it well Susan. In Canada, do they take over when someone needs Long Term Care? It’s confusing to me. We’ve chatted before online, and after reading this, I am wondering why someone else is in charge of you LO.


  4. Thanks Susan, so well written and I learnt so much from your words. I take lots of piccies of my mum too and have had some ‘advice’ from well meaning family and friends about putting them on social media. My reasons are exactly what you have said – thank you!


  5. The shame of institutional care, not enough staff, not enough training, and CEO’s that don’t understand or really care what’s happening in these institutions (I can’t bring myself to call them homes). Here in New Zealand we closed all institutions for the mentally ill and mentally challenged putting them in the community but then built disgraceful places for our elderly to be put into..large corporations just interested in the money and a medical model that has no concern for the mind or spirit..its way time things changed.
    I own a small 8 bed resthome we have ages from 94 to 57 only 3 haven’t got a dementia the others stay and live with us without drugs to control behaviour and we keep them with us long after many others would have been put into a dementia unit. They are accepted and looked after by the other residents and spend their day helping where they can..we have a lot of laughter and joy here they are still living a life that has some quality. I shall stop as I could write pages..thank you for your story.


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