Category: Who cares?

Mom was “placed” in a long-term “care” facility on November 16, 2012. She was beautiful, playful and joyful on the day we kidnapped her and put her in ElderJail. She played catch with Big Bird in the kitchen and they sang You Are My Sunshine together:

I hope one day to either get over the guilt of tearing her out of her home, or to have it wiped from my memory forever. Maybe Alzheimer disease will do me that favour sometime in the future.

I slept with her on her first night in ElderJail and was with her every day for the next three weeks. On December 1, we sang carols together at the facility’s Christmas party.

Then, on December 6, I went to Calgary for six weeks; Big Bird took over where I left off, seeing Mom for a few hours on most days. But Big Bird broke wrist on New Year’s Eve. She never saw Mom again.

While I was away, they started giving Mom increased doses of Seroquel and Risperdal. When I spoke to her on the phone, her voice as thick, her words slurred, she was more confused than usual. I asked that they stop giving her the bumped-up doses; my requests were ignored. She diagnosed with a urinary tract infection on Christmas Day (I have no doubt it was from poor hygiene), and then, between Christmas and the new year, her leg started to swell. On January 11, she was taken by ambulance to the hospital, where she spent a week; she had thrombosis (a blood clot) in her left leg.

The first thing I did when I came back from Calgary on January 19, was to go to see her. It was early evening, she was lying in bed on top of the covers. She had her nightgown on over her trousers and her sweater on top. She looked sad, lost, and depressed. She responded in a whisper to my questions. She didn’t look at me.

I helped her to get up and to get undressed; I took pictures of her legs which had troughs in them from the elastic tops of her socks. There wasn’t a caregiver in sight.

Two days later, on January 21, 2013 (five years ago today), I visited her in the morning. She was listless, and quiet. Her eyes were cast downward, and again she didn’t look at me – not once. The woman who had been vibrant and energetic in her own kitchen two months earlier seemed completely hopeless and lost. She didn’t even want to sing Down in the Valley, her favourite song, the one we’d sung hundreds of times together. She looked as broken as my heart felt.

What happened to Mom in the six weeks I was gone had nothing to do with Alzheimer disease. It was the result of neglect, poor care and the inappropriate prescription of antipsychotics. Just like the case of Jean-Pierre Belley who was essentially drugged to death in a Quebec long-term care facility in December 2017.

I pray that some progress will have been made on the tenth anniversary of this day in 2023.

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Take my short survey on behaviour here.

I believe the neglect and abuse of people living with dementia is pervasive, persistent and systemic in North America, Australia and the United Kingdom. I have seen it myself and hear stories from care partners around the world on a daily basis. Still, much of it remains hidden because family members are reluctant to make incidents know for a variety of reasons I’ve blogged about previously (here and here).

When someone does go public, particularly with the kind of horrible neglect in this case from the UK, I feel it’s important to share. I hope you do too.

Shortly after I posted this, the post on Facebook was taken down; I don’t know why it might have been taken down, but here’s what it said:

“This post is regarding my dad who has vascular dementia and is in a nursing home in Salford, UK. I use the word “nursing “ loosely it should be abuse and neglect home on this occasion.The name of this place is B******* ****T part of the W****** Care Home it specialises in dementia care !!

During a visit from family on Thursday 18/1/18 my sister was informed that “he’s not very well today !!! This led to us then uncovering the reason why !!! He was covered in urine burns from his ankles to his back from being neglected and left lying in his own wee for god only knows how long to cause this damage, obviously causing a huge deterioration in his health not to mention the pain and agony he had to deal with😪..he is now in hospital ….

If this post helps stop this from happening to one more person then I’m glad I decided to post, so please share and please if you have loved ones in care homes be aware not all is as it seems.”

Here’s a list of things to consider when someone is having a “bad day” or behaving in a way that you or others find challenging: 101 potential causes of behaviour by people living with dementia that institutional care staff may find challenging.

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Take my short survey on behaviour here.