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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https://myalzheimersstory.com/2018/08/08/7-reasons-i-post-ugly-pictures-of-my-amazing-mom-on-social-media/

https://myalzheimersstory.com/2020/05/24/50-pics-that-prove-my-mom-was-neglected-and-abused-in-long-term-care/

https://myalzheimersstory.com/2020/05/14/who-is-responsible-when-people-living-with-dementia-are-robbed-of-their-dignity-in-long-term-care/