Advocacy, Toward better care, Who cares?

what happened to my mom?

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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Advocacy, Toward better care, Who cares?

the reason jolie’s dad was having a bad day

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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Care Partnering, Life & Living, Love, Memories

shower time revisited (part 3 of 3)

This is the final instalment in a three-part series. Parts one and two are here and here respectively.

I turn off the water when we go into the bathroom. I ask Mom if she’d like to take off her watch before stepping into the shower. I remind her to take her nightgown off too.

She says she prefers to turn the water on herself once she’s in. She doesn’t want to wash her hair she says; she’s afraid of getting soap in her eyes. It’s okay I say, I’ll help you make sure you don’t.

I bought special non-sting shampoo the other day should things go awry, but I don’t mention it. Better she thinks she’s using her regular shampoo.

She turns the water on. Be careful Mom I say, make sure it’s not too hot. I know how to turn the water on she says. I know you do I say. And then she says: oh the water’s too hot! Turn it down a bit Mom I say and she says okay but she’s not quite sure how to do it after 30 years of showering in the same shower and so I reach in and twist the knob for her and my arm gets soaked and water sprays all over the floor but even if the bathroom floor were flooded a foot deep it would scarcely be a drop in this colossal Alzheimer’s bucket and who worries about a drop in the bucket? Not me right now.

I guide her through soaping and rinsing her body and then it’s time to wash her hair, which is the worst part for her.

Pick up the shampoo Mom I say and she says where is it? On the floor on your right I say. She pauses to think about where her right is and then starts to reach down to her left and I say the other right Mom, the other side. I have to yell a bit so she can hear me over the sound of the shower and through the foggy glass doors that separate us but I try to yell softly in a calm and soothing tone so it doesn’t sound like I’m telling her what to do because she doesn’t know how to do it herself anymore which clearly I am because clearly she doesn’t.

But we pretend otherwise. We pretend we’re not inside out and upside down. We pretend it’s normal that I should be standing here fully clothed while she’s naked in her shower in her bathroom with the pink floor and that I should be telling her how to have a shower because it’s something we’ve done together for decades like making jam, or picking green beans in her garden or walking down to the lake.

We pretend this demented world is normal. I pretend to preserve her dignity. She pretends for the sake of her pride. We both pretend so the other won’t be embarrassed. But somewhere inside we feel embarrassed anyway. We bury it.

Somehow healing sniffs out that bone of embarrassment, digs it up and worries it until the awkward intimacy becomes strangely natural and familiar. It’s a small miracle. We’re lucky. We accept our unwanted reality and protect each other in the process.

She gropes around and finally finds the shampoo and I tell her to flip the cap open and put a bit of shampoo in her hand and then to put it on her head and then to put the shampoo container down and she does and she’s scrunching her eyes shut so tight it must hurt because she’s terrified of soap getting in them and I say okay mom you can rinse now, back up a bit and put your head under the shower and she does and then I say turn around Mom and put your face under the water and she turns around in a slow motion pirouette with her hands over face because “I don’t want to get soap in my eyes” she says and I say I know Mom and it might be easier if I just got in there with her but it’s important that she does it herself because she wants to and she still can and it’s about confidence, competence, and the illusion of control.

She may be helpless, vulnerable and childlike, but she is also a grown woman with thoughts and feelings. She is my mother.

“You can turn the water off now Mom.”

“Okay,” she says and she does.

She slides open the shower doors and stands there not quite sure what to do next. I hand her the towel I had put on the heater so it would be warm when she got out.

“Oh!” she says, “that feels good.” She’s talking about the whole experience: the shower that’s now over, the warmth of the towel and the fact that she’s fresh and clean.

“I’m glad Mom.” Inner peace seeps through the cracks in my heart like a rising tide. Pockets of despair get filled with something else. I smile. She doesn’t see. She’s too busy drying off and thinking about what’s next.

“I need to brush my hair.”

“Your brush is there Mom.” I point in front of her, beside the sink. She picks up the brush, runs it through her hair hard and fast. Then she “plumps” the sides with her fingers; she’s always done that. She has a particular way of looking at her reflection, with her chin pulled slightly in and her eyes gazing upward. She’s still beautiful and youthful, even at 84.

“Powder?” I ask.

“Oh yeah.” She had forgotten. Johnson’s Baby Powder. Large size. She puts a little on each breast. Also large size.

“You like to put deodorant on too Mom. You do it like this.” I stand beside her in front of the mirror; she watches as I lift up my left arm and motion up and down with the stick of deodorant in my right. Dove unscented. White and blue plastic package. I hand it to her. She copycats. I pour a little Oil of Olay into the palm of her hand.

“Rub your hands together Mom, then put the cream on your face.”

“Okay.” She applies the cream none too gently. “That’s that done!” she says.

And with that done, it’s time to help her get dressed.


This is the final instalment in a three-part series. Parts one and two are here and here respectively.

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