Advocacy, Memories, Toward better care, Videos

the perils of care: christmas 2012

Mom was vibrant, energized, spunky and alive on November 16, 2012, the day she was placed in a nursing home. I spent the next three weeks trying to get her settled into a new way of living. It was clear to me from the outset that the facility in which she had been placed was ill-equipped to properly care for people who live with dementia. But I wasn’t in control of her care, there was little I could do. I spent as much time as I could with her for the better part of three weeks. On December 1, we attended the facility’s Christmas dinner. I filmed her singing carols; she was beautiful, healthy and engaged:

On December 6, I went to Alberta to be with friends for a much-needed break from full-time care partnering. I was worried about Mom, but I knew Caroline would see her regularly, and I would return mid-January to be with them both again. How much could go wrong in such a short time? A lot as it turned out.

Within two weeks of my departure, they started giving Mom quetiapine (Seroquel) in the morning; previously, she had only taken it at night in small doses to help her sleep. When she had begun taking it the year before, I didn’t fully comprehend the dangers of antipsychotic drugs, nor did I understand how prevalent they are in Canada, particularly in Quebec. But I quickly learned the effect Seroquel had on Mom – it knocked her out cold. The effects of the increased dose and frequency were cleare when I spoke to her on the phone from Alberta, her words were slurred, her voice monotone, she sounded depressed, she couldn’t sing jingle bells. I asked them to stop giving i her the drug to her. Then I begged them to stop giving it to her. My pleas were ignored.

She wasn’t being properly toileted and/or changed (I would see the evidence of that when I got back) and she soon came down with a urinary tract infection (UTI); treatment for which began on Christmas Day. Three days later, I wrote a worried email to the director of nursing (DON):

“Please tell me how Patti is. When I talk to the nurses, they say she is fine and getting better, but when I speak with her on the phone she sounds terrible: shaky, extremely confused, voice slurred, slow rate of speech. She is not at all the same person I left in good physical health three weeks ago. I’m really worried…. 😦  Is she still being given the Seroquel in the morning?”

I got no reply to the Seroquel question. Our angel Caroline broke her wrist on New Year’s Eve; she would never see Mom again. Sometime during that week, Mom’s left leg began to swell. She was sent to the hospital by ambulance on January 10, spent a week there and was returned to the care facility on January 17. I got back the next day and was shocked by her demeanour. The woman I had left six weeks prior seemed to have vanished.

On January 19, I found her lying in bed half dressed in her “street clothes” with her nightgown over her trousers and under her sweater. She had obviously tried to get ready for bed by herself and got confused. She was dopey from medication, could hardly keep her eyes open:

On January 21, I went to see Mom first thing in the morning; she was listless and depressed; she didn’t even want to sing. This would have been unthinkable just two months earlier:

I immediately wrote to the person in control of her care with a cc to the DON a the facility:

“During the first few weeks of Mom’s stay at the facility, she seemed to be adjusting fairly well despite periods of high anxiety, and wanting to “go home.” Six weeks ago Mom and I played catch in the hall outside her room. She was able to easily go up and down the stairs, her eyes were clear and bright. She was in good physical shape. She has declined more in the last six weeks than she has in the last two years. Her drug regime was changed; she became lethargic and listless.She’s had a UTI and was hospitalised for thrombosis. She shuffles down the hall holding on to the railing instead of walking confidently as she used to just a month ago. Much of her spark and energy are gone. The stuffing has really been knocked out of her. I believe this could have been prevented to a large degree.”

I was so distraught at what was happening to Mom that, over the 2012/13 festive season, I had set legal wheels in motion to try to gain control of her care. Those wheels of injustice would eventually grind to a halt in March 2014. Mom died on August 17, 2016; and I continue to advocate so others might not have to suffer what she did.

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4 thoughts on “the perils of care: christmas 2012”

  1. I am horrified by this story!

    My mum had to go into a facility after a months stay in hospital where they didn’t know how to deal with Alzheimer’s I kept telling them but doctors and nurses know better than us and just did what they wanted. It was due to their poor care that things got out of hand and this was with me in there as much as possible ( this was due to a sacral fracture). I was pretty upset by it all but was powerless to stop it. I must say that most of the dementia units here do not like using drugs. Neither Mum nor John have been prescribed with anything like that. If they were I would have to be told and would have refused to allow it.

    You are doing a wonderful job advocating for this practice to be curbed. It reminds me of children being prescribed with Ritalin when good parenting is often the answer.


    1. “I kept telling them but doctors and nurses know better than us and just did what they wanted.” Yes, the same happened with me, Diane. Part of the problem is some so-called experts/prfessionals don’t move forward with the times, they stay stuck in old ways of thinking and fail to embrace newer and better care models.

      From what I understand I think New Zealand and the UK are doing better jobs of reducing the use of antipsychotics in dementia than Canada and the United States are, although a lot of work remains to be done as I wrote in this editorial, which will soon appear in the Journal or the American Medical Directors Association: “Efforts to reduce antipsychotic use in dementia care are starting to bear fruit, but a lot of work remains to be done.”

      Yes, it is similar to children being prescribed Ritalin. Inappropriately medicating children remains an issue in Canada, and in particular in Quebec, which seems to have a drug culture that sets it apart from the rest of the country. Thus: “Canadian doctors are increasingly medicating children with antidepressants and antipsychotics, suggests a new study experts worry is the latest sign of using drugs to achieve “behavioural control.” The common themes in medicating in eldercare and children are lack of understanding, money and control. See more here:


  2. Susan,

    Watching the Perils of Care 2012 is just haunting for me. It is a precise and accurate depiction of what my mother endured.

    The same is happening in Oz, still NOW :,(

    Mum passed August 13th 2016. She had a 5 year stay in residential care.

    I also continued to advocate for mum throughout this time; to no avail mostly.

    The power imbalance between the medical profession and carers is very real… It’S simply unjust.

    I’m in my second year of a Social Work Degree and hope to work alongside families, carers and people with dementia.

    I will not luy down.

    What a travesty.

    Nicky Bright


    1. “The power imbalance between the medical profession and carers is very real… It’S simply unjust.”

      I agree. Things need to change, and we’re the ones who must persist in making it happen. #FightTheGoodFight Nicky and know you are not alone ❤


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