It’s one thing to see someone when they are sedated. It’s quite another to see the sedation taking effect, and the person who doesn’t wish to be sedated trying to fight it off.
Against my wishes and against her will, my mom was sedated with quetiapine at breakfast every day for almost four years. The dose she was given knocked her out cold for several hours. She got another debilitating dose in the evening. They also gave her risperidone twice each day. This drug regimen was an abuse of her human rights.
I had incontrovertible proof that non-pharmacological strategies improved the quality of Mom’s life, and, should they have been fully implemented would have eliminated the “need” to inappropriately sedate her with quetiapine and risperidone. I repeatedly voiced my concerns and shared my evidence. I was ignored, and branded a troublemaker.
It took 45 minutes to an hour for the quetiapine to take full effect. Sometimes, during that window, I would pick Mom up at her Dementia Jail and take her to my house so that when she woke up three or four hours later, we could spend some quality time together.
This is what Mom’s experience looked like during the last five minutes or so before she fell “asleep:”
My mother, who lived with dementia, was chemically and physically restrained every day for the forty-five months she lived in a dementia jail (aka a long-term care facility or nursing home).
These restraints could have been avoided if the medical personnel in charge of her care had addressed the root causes of the behaviours they found challenging in her. All they needed to do was to take a closer look at what was going on around Mom. If I could do it, surely they should have been able to.
When Mom was sedated, she was unable to do things she loved to do such as walking and singing. Here she is not singing (because she had been sedated an hour or so before), at some of the weekly sing-alongs conducted by volunteers at the place she resided:
Besides cruelly sedating her with antipsychotic drugs, no one who was involved with my mother’s care listened to my request to provide her with music therapy. So I hired a music therapist myself and the three of us enjoyed many happy afternoons together after the worst sedative effects of the chemical restraints had worn off. Here’s an example of one of those wonderful sessions:
#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; } /* Add your own MailChimp form style overrides in your site stylesheet or in this style block. We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */
Subscribe to MAS now & get 5 free PDFs & a page of welcome links:
My mom was a go-getter, she loved to be on the move. Even when she had been living with advancing Alzheimer disease for several years, she told me clearly and directly that she wanted to “keep going.” That was her way. She didn’t want to be sitting and sleeping and missing out on living.
Sadly, Mom didn’t get to live the life she wanted in the end.
When she was moved into a Dementia Jail (aka “nursing home” or “long-term care facility”) in November 2012, her “get up and go” behaviour and her feistiness were challenging for the staff. Instead of finding ways to make the most of her energy, the medical personnel in charge of her care inappropriately prescribed increasing amounts of antipsychotic drugs to chemically restrain her. The drugs caused her to become unsteady on her feet and she started to fall. Instead of reducing the drugs to prevent the falls, they physically restrained her.
If that wasn’t bad enough, her basic care and hygiene needs were often not met. When I went to visit her, which was virtually ever day for four years, the first thing I did was to take her to the bathroom, where, more frequently than not, I would find that her incontinence brief needed to be changed, so I would change it myself.
Here are twenty-five pictures I took during 2013 as I gathered evidence to prove the neglect and abuse I witnessed every day:
#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; } /* Add your own MailChimp form style overrides in your site stylesheet or in this style block. We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */
Subscribe to MAS now & get 5 free PDFs & a page of welcome links:
Six years — almost to the day — after the Director of “Care” at the #DementiaJail in which Mom resided stood up in court and lied about the way my mother was being treated under her supervision. Now, I’m preparing a complaint to lodge against the DoC with the Quebec Order of Nurses. Part of preparing the complaint involves going over all the videos, audios, images and notes I made to document the neglect and abuse my mother was subjected to for four years until she died on August 17, 2016.
This video shows Mom’s condition on December 1, 2013, after I had asked the charge nurse not to give my mother a morning dose of antipsychotics because she could barely walk. My request was denied. I took Mom to my house where she slept sedated in a chair for several hours before waking up and again experiencing great difficult walking. I called it the Seroquel shuffle.
No one with a modicum of common sense would have given my mother antipsychotic medication in the condition she was in before breakfast that day, which was essentially the same condition she was in when she woke up in the afternoon at my home. The debilitating effects of the drugs were shocking; they are documented in the video below.
Six years later, it still makes my blood boil.
To add insult to injury, I was branded a troublemaker for advocating on my mother’s behalf, and for the last eighteen months of her life the time I was allowed to spend with her each day was restricted.
I believe what goes around comes around. The abuse and neglect will all be fully revealed one day.
November 16, 2018: I doubt I will ever get over the deep grief I feel each November 16, the day my mother was relocated to #DementiaJail in 2012. All I can do is try to process it in whatever way I can. This year, once again, it’s with poetry.
#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; } /* Add your own MailChimp form style overrides in your site stylesheet or in this style block. We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */
Subscribe to MAS now & get 5 free PDFs & a page of welcome links:
In this second of two guest blog posts, soprano, performer, recording artist and soon-to-be author Joy Dey shares her experience of dementia care in the UK, where her mum Winnifred was neglected in three separate care homes. The first post is here.
~~~~~~~~~~~~~~~~~
My mum Winifred was neglected in three separate care homes between 2013 and 2018. She was evicted from the last of the three, which turned out to be a blessing in disguise as she now resides in a wonderful home where the management and staff really do care, and where the practices and systems reflect that.
My experience with mum has convinced me that we need CCTV cameras in the common areas of care homes throughout the UK, and I fully support Jayne Connery’s Care Campaign for the Vulnerable. Jayne has worked tirelessly to create awareness of the difficulties many of us face in getting good care for our nearest and dearest. Her quest for CCTV to be installed in all communal areas of care homes in the UK can only bring more comfort for relatives and transparency for care homes.
Poor quality food served to residents in their seats (and not in the dining room)
Fluctuating meal times, particularly at ‘tea time’. This could take place any time between 3.15 and 5.30 or later
Lack of (or no) staff on the floor
Residents prepared for bed anytime after 3 pm
Lack of/late toileting; residents calling to be taken to the toilet and waiting; residents regularly asking relatives “can you ‘elp me” … as no staff on the floor
Residents being left in wheelchairs and not transferred to chairs;
Little/no stimulation
Shouting at residents
Drugs trolley being left open and no one on floor
Mum (and other residents) in the stair lift, in various states of confusion and distress
Mum (and others) going ‘missing’
Unnecessary falls
Not being taken outside
Not being taken to the dining room
Due to lack of updated training and lack of staff, wheelchairs used instead of maintaining mobility – leading to premature bed bound residents
I feel that by addressing these kinds of issues, care will be improved and people who live with dementia will do so with dignity until the very end.
Joy Dey is a soprano singer, performer and recording artist, living in South East Kent, United Kingdom. She is currently working on several books, one of which will likely eventually contain a version of this piece. At the time of posting (August 2018), Joy’s Mum, Winifred, lived in a care home, where Joy visited her almost daily. Winifred was diagnosed with Alzheimer’s in 2008
“I’m so happy to hear that Mom,” I said. “And I’m so happy to see you. I didn’t see you yesterday, and I’m really happy to see you today.”I gave her two big kisses on the cheek.
She was already in a wheelchair, so there was no need to transfer her from a recliner to roll her down to the elevator that would take us to the first floor for tea.
Mom’s aphasia made it hard for her to string words together, and that sometimes made it hard for me to decipher what she was trying to say. But she had no problem singing, and her ability to articulate her thoughts invariably improved after we sang several songs, so I wove our favourite tunes into conversations whenever I could.
“I played golf yesterday, Mom,” I said. “I had a 96.”
“Ninety-six,” she said.
Then I went on to tell her about the rainbows, which led us naturally to you know what:
When we got about halfway through, I took out my phone…
We also sang “When you wore a tulip,” “Take me out to the ballgame,” and “My wild Irish Rose,” after which I offered mom a cherry square to accompany her tea. Listen to the change in her ability to answer questions, express herself, and articulate what she likes and wants:
Thanks to the unknown baker who made the delicious cherry squares we savoured on that my oh my, what a wonderful day. They brought us both great joy ❤
If people are offended by the images, imagine how sickened I was seeing the real thing day after day for several years. Worse, imagine how I felt being powerless to stop it. No wonder I experienced post-traumatic stress after Mom died.
I don’t post what I saw and heard lightly, I do it with a clear purpose: to give meaning to the ill-treatment Mom received, which she didn’t deserve, which should never have occurred, and which would not have happened if I had been in control of her care.
For the record, here are seven specific reasons I share the ugliness I witnessed:
People whose loved ones are still in institutions where they are being neglected and abused are often silenced out of fear of worsening the situations of the people they love, just as I was when Mom was alive. Now that she’s gone, I’m free to show how poorly some people living in institutions are really treated.
3 ) To spur people into action
Photographs, and video and audio recordings are powerful ways of getting messages across. When people see real people endure real suffering, they are more likely to actually DO something about it. And when they realize that the people they love and potentially they themselves are at risk, the chances they will take action further increase.
4 ) To honour my mother’s experience
My mom fought for what she believed was right, and she wasn’t afraid to stand up and make her voice heard. I am my mother’s daughter and I’m also not afraid to fight for what I believe is right in an effort to create change and make the world a better place for everyone. If that means sharing the ugliness of neglect and abuse, I will do it, because in this case at least, the ends justify the means.
5 ) To expose the problem
Sweeping all of this under the carpet does no one any good – least of all vulnerable people who currently reside in long-term care. If we don’t take a good hard look at the reality of what happens in these kinds of institutions, we’re going to be in big trouble not far down the line. And by “we” I mean anyone who is over the age of 20 right now. Because everyone will be impacted. Either: they will need to be cared for, they will be caring for someone, or they will be dependent on someone who is caring for someone else.
6 ) To encourage others to share their stories
Sometimes we’re afraid to share our experiences because we think we are alone, that what has happened or is happening is an aberration, an exception. By sharing my story and Mom’s story in a truthful, real and authentic way, I hope to encourage others to do the same, thus further increasing awareness, breaking the silence, shocking people into action, honouring the experiences of the people we love, and exposing the problem.
7 ) To implement Mom’s good advice
In the spring and summer of 2009, there were protests in the streets of Iran. The government arrested, imprisoned and tortured its own citizens. I asked Mom, who was living with the “early stages” of Alzheimer disease at the time, what she thought about what was going on. I created a series of short videos using clips from our conversation. It strikes me that the wisdom she shared then applies to all kinds of situations, including our broken dementia care system, and, in an eerie kind of foreshadowing, mirrors some of the points I’ve made above. Essentially, she said: 1) band together and create a revolution; 2) live like normal human beings and 3) rethink what you’re doing.
I didn’t see Mom on August 7 (a Sunday), because I played in an interclub golf event, which lasted the whole day. But I knew she would be safe and loved for at least part of the day because Ingrid* would be with her from 3 p.m. in the afternoon until about 7, as she was most Sundays.
Like Sally,* Gaby, and our Caroline, Ingrid was one of Mom’s earthbound guardian angels. She’d been visiting Mom weekly for two years. And just like Mom loved Sally, and Sally loved her, Mom loved Ingrid and Ingrid loved Mom. Same with Sandy, who went to the residence to do Mom’s hair every Friday. Mom and I were incredibly fortunate to have these angels in our lives. We never would have made it otherwise. Never.
I called Ingrid later, to see how her time with Mom had gone that afternoon. She confirmed my experience of the previous several days. Mom was tired, exhausted even, and both of her legs were swollen; one was worse than the other.
“She ate her dinner with her eyes closed,” Ingrid said. “But at least she ate.”
Ingrid described the fixed stare as Mom “not being there.” She doesn’t look directly at me, she said, but somewhere else, like she’s spacey or something. I told her I knew exactly what she meant. We wondered at the potential causes: the trauma of the injuries she’d suffered, Mom’s fighting spirit, and/or her letting go of this life.
“We also don’t know if she’s on any additional drugs,” I said.
“They don’t give her anything in front of me anymore,” Ingrid replied. “The only thing they do in front of me is the eye drops. Other than that I don’t see when they give her medication.”
“Yeah,” I said, unsurprised.
“I don’t know if it’s because I complained when she spit it out the pills, or if it’s because they give them to her at different times. I really don’t know,” Ingrid said.
Ingrid may not have known why, but I did. It was all about power and control: of Mom, of me, of other residents and family members, of the staff, of the flawed approach to care.
“When I was there, she would also spit out the pills, and then they would force her to take them, which they’re not supposed to do,” I said. “If the person refuses, they’re not supposed to force them, but it’s been like this since the beginning.”
Could I have done anything differently? Anything better? Looking back, I don’t think so. I believe I did everything I possibly could, and so did the angels to whom I am so grateful – the ones that put their arms around Mom and me on our journey home.
My Alzheimer's Story 