Advocacy, Real life, Toward better care

puppies & people living with dementia: it’s not rocket science (p.s.: forget the pillows — leave them with the real thing!)

We know what works — this little visit with puppies got 13 million views in five days on Facebook.

So why the hell don’t we just do it? Why don’t we have puppies and kittens and plants and flowers and music and joyful stuff in long-term care facilities and in our own homes instead of TVs and geri-chairs?

Mom got more joy from her kitty cat Pia Roma (her “best friend”) than she did from anything. It’s so simple…

And yep, it’s a great idea and all, but Is it just me or do the PLWD look justifiably confused when they give them pillows as replacements for the real puppies? It’s like, “Hey! wait a minute, you just gave me a puppy and now you’re going to take it away and leave me with a pillow? Huh?”

Sure it’s a nice gesture to bring along a puppy, but maybe the rest of it needs a bit of rethinking #justsaying Or maybe I’m wrong…What do YOU think?

the paws that refreshes

a magical musical alzheimer gift

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Advocacy, Real life, Toward better care, You said it!

bj and her mom gloria look for blessings

November 21, 2018: Gloria Gallagher has lived with Alzheimer’s disease for more than a decade. She’s paralyzed from the neck down, and so she cannot move her arms or legs. She can’t get out of bed, and has a hard time articulating what she wants to say. She’s been “this close” to death numerous times. And yet, she and her daughter, author BJ Gallagher, often laugh, joke and have a great time during their visits.

“She’s just so dang cute I can hardly stand it sometimes. She just bursts my heart wide open,” BJ says. “Sometimes we have so much fun together!”

How can this be? How can Gloria an BJ be having fun? How can they be joyful in the midst of disease and debilitation? Essentially, it’s about attitude.

“Whatever life hands us, we just gotta make the best of it,” BJ comments to FB friends. “When Mom was diagnosed with Alzheimer’s 10 or 12 years ago, we experienced the initial shock and dismay. But once we got past the ‘oh shit’ reaction, we moved on to, ‘OK, this is happening so we’ll just deal with it as it unfolds.’ I had heard the horror stories about Alzheimer’s, so I thought the disease would wipe out my mother’s personality and turn her into a vegetable. But that hasn’t happened. She is completely paralyzed but inside that old frozen wrinkled body, Gloria is still alive and well. Lucky me. Lucky her. Everyone’s journey with Alzheimer’s is different – and part of it is how the patient and the family deal with it. Mom and I, we just look for the blessings.”

You said it BJ!

Like Gloria and BJ, Mom and I looked for the blessings, and we found many among the challenges and tears. I hope you will too ❤


You said it!” is a place to discover informed comments, inspiring thoughts, short stories, good ideas, provocative opinions, quotable quotes and noteworthy snippets from across my worldwide network.

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Advocacy, Inspiration, Life & Living, Love

imagine how much suffering could be spared!

My friend Lorrie B. is an amazing writer, editor, translator and primary care partner to her parents, both of whom live with dementia. Lorrie is also an insightful blogger who documents her care partnering experiences here:

Like me, Lorrie is also insatiably curious, and, since becoming her parents primary care partner, has done extensive research related to dementia (as have I!). Despite having read reams and reams of dementia-related stuff, Lorrie and I agree the article referenced in this post is one of the best we’ve come across on living with dementia. Lorrie left this comment:

Wow. I’m with you, Susan, this is one of the best articles about “living with dementia” that I’ve read in the past three years of scouring the media. Such a beautiful and valuable perspective, level-headed and lyrical. I saw both my parents in many of the instances that she mentions – if we had more of this thinking, imagine how much suffering could be spared! Honestly, if people with dementia can teach us to think more with our hearts than our heads, it would benefit everyone to be in their world and feel the power of love beyond the brain. Thank you so much for finding and sharing this.

Lorrie’s with me and I’m with her – we’ll all benefit and suffer way less when we feel the power of love beyond the brain.

You said it Lorrie B.!

#FightTheGoodFight #WeCanCareBetter


you said it!” is a place to discover informed comments, inspiring thoughts, short stories, good ideas, provocative opinions, quotable quotes and noteworthy snippets from across my worldwide network.


One of Lorrie B.’s blog posts: Lesson #29: Hope Springs a Kernel

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Advocacy, Inspiration, Life & Living, Love

3 excerpts from the best article on dementia i have ever read (and a link to the full meal deal)

Sometimes you come across something that captures everything you want to say so brilliantly that it literally takes your breath away, and makes you weep in gratitude.

Sallie Tisdale’s article Out of time: the un-becoming of self, in the March 2018 issue of Harper’s Magazine, is one of those somethings. It says in five pages what I have tried to articulate in the more than 600 pages on this blog, in workshops, webinars, conversations and comments, with mixed success as best. Yet Tisdale does it beautifully, succinctly and poetically.

Here are three important excerpts from her compelling piece:

“The stark fact is that dementia is incurable, progressive, and fatal, but here is the surprise: in the company of [people who live with dementia], one finds peace and unquestioned love in at least as much measure as in the rest of the world. I watch my clients navigate each day’s puzzling details. I know their efforts may look to many observers like an embarrassment of loss. I see the riches: the brave, vulnerable, completely human work of figuring things out. People with dementia sometimes have a rare entrancement with their surroundings, a simplicity of perception, a sense of wonder. Being with a person who has dementia is not that different from being with a person who doesn’t share your language. It is a little like talking to someone who has lost her tongue and cannot speak, has lost his hands and cannot write. This is not a bad thing; it is just a different thing. It requires a different kind of attention.”


“The fact that my own me-ness persists is obvious, and yet a persistence of identity is one of the last things we expect with [people who live with dementia]. They seem different to us; mustn’t they be different to themselves? The spate of recent research considering how a person with dementia actually feels tells us no, not really. People know they have a memory impairment, but they feel themselves to be the same person, even in late stages of the disease: “I’m like a slow-motion version of my old self,” says someone with dementia. The possibility of pleasure, let alone contentment, for this person is barely acknowledged. A team of researchers called our current vision of dementia the tragedy discourse. Another group notes that most researchers have shown “a stark disinterest in happiness,” and their assumption of distress is because that is “the only available lexicon for experience, the only available lens through which dementia is viewed.” Surveys have found that Alzheimer’s disease, the most common form of dementia, and cancer are the diseases that people fear the most. The communal response to dementia seems to invite only existential despair.”


“Yet people with Alzheimer’s consistently rate their quality of life higher than their family members do. In a large international study, people with cognitive impairments were no less happy than healthy people. When family members are upset about a relative’s decline, certain it is a terrible experience, they are not always clear on who is suffering. My friend Kate’s mother had Alzheimer’s. She had always worn careful makeup, and she was uncomfortable leaving the house without it. But her makeup became exaggerated, almost clownish, and she refused Kate’s help. Looking in the mirror, she liked what she saw. Going out to a restaurant became, for Kate, “an exercise in my own discomfort, being willing to let her be as she was.”

The full article is here. I strongly encourage you to read it.

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Advocacy, Life & Living, Toward better care

15 examples of neglect & abuse that would have been captured on cctv in winifred’s care homes

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.

For example, if CCTV cameras had been installed in the communal areas of Holly Lodge, the place from which my mother was evicted, they would have captured this kind of neglect:

  1. Poor quality food served to residents in their seats (and not in the dining room)
  2. Fluctuating meal times, particularly at ‘tea time’.   This could take place any time between 3.15 and 5.30 or later
  3. Lack of (or no) staff on the floor
  4. Residents prepared for bed anytime after 3 pm
  5. 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
  6. Residents being left in wheelchairs and not transferred to chairs;
  7. Little/no stimulation
  8. Shouting at residents
  9. Drugs trolley being left open and no one on floor
  10. Mum (and other residents) in the stair lift, in various states of confusion and distress
  11. Mum (and others) going ‘missing’
  12. Unnecessary falls
  13. Not being taken outside
  14. Not being taken to the dining room
  15. 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

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Image copyright: giggsy25 / 123RF Stock Photo

Advocacy, Life & Living, Toward better care

nurse, can you ‘elp me?

In this guest blog post (one of two), soprano, performer, recording artist and soon-to-be author Joy Dey shares her experience of dementia care in the UK, where her mum Winifred was neglected in three separate care homes.


When my Mum was first diagnosed with Alzheimer’s, I knew I faced a tough task convincing other family members that, at some point, Mum would need to go into care. At that time, despite hearing a myriad of stories about ‘how awful care homes were’ I had faith. This was, mostly, due to the fact that, by then, I had been entertaining in care homes for over 10 years. Many homes I visited were warm, welcoming, friendly environments. It was during this time that I was awakened to the Power of Music, particularly for those living with dementia.

What had begun as a way of earning a ‘bread and butter’ income had very quickly become a vocation.  I didn’t realise, at that time, the importance of stimulation/activities, especially for those living with dementia, and I loved it! Oh the joys of witnessing an otherwise forlorn resident light up like a Christmas tree when they heard their favourite tune or aria. I felt that music, especially for those living with dementia, was possibly as important as food.

It might be fair to say no one, ever, said “I want to spend the rest of my days in a care home”. [Peter Kay springs to mind.] A few may have, to be fair; those without relatives or not wanting to be burden on their families, altruistic souls. It was my Mum’s greatest fear. In the early stages of Mum’s diagnosis, one evening, I received another midnight call from a desperate sibling insisting that I speak with Mum to remind her that she didn’t have a kiddie at 74 years of age. I might have, foolishly, mentioned that it might be time for her to go into a care home. She didn’t speak to me for 3 months. I was heartbroken.

If there was ever a doubt in my mind about the ‘care system’, however, I would often be reminded of the CQC. The Care Quality Commission, who would like ‘Knights in Armour’, arrive ‘unannounced’ at care homes etc. and ‘put things right’ if there were any failings. I had faith.

Joy and Winifred in 2009

Sometime later, another sibling reminded me when it was ‘time’ … and to ‘do it’. I acted upon that, as it was probably the best and only support I was going to get over the next 6 years from my siblings.

Care Home No. 1, May 2013

I chose a home I had the most faith in. It wasn’t close to my own home but, at that time, it was the best I knew. It housed an excellent Manager (very important) and one of the best activities coordinators (also very important) I knew. Things started well and Mum settled quickly. However, the Manager left a few months into Mum’s stay and the AC became unwell and eventually left.   Mum developed lymphoedema, often sitting up in a chair through the night with the staff, and then cellulitis when a resident ran into her with his Zimmer, and gouged a hole in her foot.   I was told I had to provide a stool or pouffe if I wanted her feet up; the home wouldn’t buy one. I purchased one and every other bugger had their feet up on it, except her.

As I visited Mum practically every day, I became a familiar face to the residents and I would often be mistaken as “nurse … can you ‘elp me”? I obliged when possible but Health & Safety kicks in, often in all the wrong places, and you are scared to ‘elp anyone.

Unfortunately, the care diminished and I, fortunately, visited Mum one evening when she looked quite ill. She was grey faced and gasping for breath. Staff hadn’t called an ambulance. They were all sitting around the dining room table chatting about their weekend. I insisted on one. Paramedics arrived, confirmed – absolutely- that I had done the right thing and filed a ‘vulnerable adult’ report against the home. They told me they were appalled at the non action/involvement/attitude of the staff, without a word from me.

Mum returned after a stint in hospital, but within 24 hours had a fall, and been given another resident’s medication amongst other failings. She was taken to hospital again but Social Services recommended that she did not return to this home.

Care Home No. 2, Phoenix Residential Care Home, Chatham Maidstone Road, Kent – April 2015

I knew the newly employed Manager at a new home close to mine. I applied for Mum to go there once she was discharged from hospital. This took a while, owing to CQC delays, and Mum was threatened with an eviction. The last days there were very uncomfortable indeed and the stress led me to being hospitalised with a suspected tumour. However, eventually, everything was settled. I was happy, Mum seemed happy and I was, again, hopeful. However, the Manager was sacked soon after she had set everything up and a member of staff, with no apparent expertise or qualifications, was given a role as Manager. Following a succession of UTIs, malnutrition, heart attack, escape on to a very busy main road, no stimulation and general poor care, Social Services decided that Mum should move to another home.   The home had been reported to CQC by many, it appeared, but the CQC worked with them to keep the home open.

Care Home No. 3. Holly Lodge, Chatham Maidstone Road. Kent. March 2016

This started well despite a ‘requires improvement’ rating by CQC. Social Services recommended I take a look at it, which I did. Holly Lodge was clean.   A pleasant and mild mannered Assistant Manager showed me round. The menu looked promising. I was impressed, despite the rating. There were no activities to speak of but I felt I could cover that aspect for Mum. My only real concern was that Mum’s room was on the 1st floor and the only way of getting there was via a stair lift. I expressed my concern and asked that Mum be moved to a ground floor room when one became available. I was aware that the use of a stair lift might possibly not be recommended for a resident living with dementia. However, whenever I enquired with owners/management about Mum and the stair lift, I was reminded that Mum had ‘settled into’ using it.

Mum suffered a further heart attack in May of 2016 and was hospitalised. On her discharge, it was suggested that a physiotherapist be requested to regain Mum’s mobility. It never happened. Instead of mobilisation, the wheelchair was used rather than the walking frame. Mum’s mobility began to decline further, although I would get her up and walking with the frame whenever possible.

Over the next 18 months, services at Holly Lodge declined. The Manager left on maternity leave; not replaced. The Assistant Manager left; not replaced. The joint owner took over as Manager and so began a period of lack of support, lack of transparency, unprofessionalism and dishonesty. The food quality and quantity declined; residents were rarely taken to the dining room; evening meal times fluctuated enormously; residents were rarely taken outside; the floor was often left unmanned, with ‘falling incidents’ increasing and with, often, an open drugs trolley where relatives were asked to ‘watch the floor and/or the trolley’. I was told that Mum wasn’t eating and had been prescribed ‘Ensure’, so I visited every day, more or less, and took food for her.

Ted, Winifred and Joy at Ted and Joy’s wedding in 2014.

In August, 2017, I was informed by a member of staff that Mum had been taken to the bathroom and had been left alone. She must have stood, unaided, and was found by the fire escape. I was informed by management that this was an isolated incident.   I stayed late one evening in order to witness Mum on the stair lift etc. I spoke with night staff about Mum ‘settling into’ the stair lift. I was told she had ‘never’ settled into it. I also mentioned about the ‘isolated incident’ where Mum had gone ‘missing’. I was informed that it was not an isolated incident. Mum often stood and walked unaided. This was also of concern to me as there was no gate or barrier at the top of the stairs and Mum’s room was close to it.

A Best Interests Meeting was called. A local GP arrived at the meeting with a flu jab for Mum. It is in Mum’s medical records and Care Plan that she is allergic. The GP’s flippancy about the effects of the stair lift, and a guarantee by him that staff would be able to react in time, if there was any danger of Mum falling down the stairs, suggested that the GP had little or no knowledge (or interest) of dementia. The Care Worker, on behalf of Essex Social Services, was doing his job. He needed to tick boxes to confirm that there was no ‘medical need’ for Mum to move to a ground floor room, despite a letter from the Head GP at the Surgery, asking that Mum be moved ‘for medical reasons’. My concerns were trivialised and stated as “being blown out of proportion” by Social Services. They refused to provide an Occupational Therapist to assess Mum and, in fact, blocked the OT requested by Mum’s Surgery.

Further, at a meeting with management and a member of staff, I was reminded that other residents (living with dementia) used the stair lift and one, in particular, squealed all the way up and down every day. So that was alright then?

After a long battle, I engaged a Solicitor to deal with the matter. At the Solicitor’s request, I arranged for a private Occupational Therapist to assess Mum. The OT confirmed that Mum should be in a ground floor room and not travelling in a stair lift. The presence of the OT, however, appeared to upset the owners/manager. The Manager was dismayed at the verdict. I am not sure of the reason why. During this time, it had been suggested by management that, perhaps, Holly Lodge could no longer ‘meet Mum’s needs’ and there began a period of threats of eviction.

Staff informed me that Mum would be hoisted once she moved to the ground floor. I had been assisting Mum to stand and walk over the following 2 weeks, having been shown the correct procedure to assist. This procedure was not adopted by many of the staff at Holly Lodge. I recorded Mum walking freely to her room (some distance) and, occasionally, returning, shadowed by me. This didn’t appear to be well received by staff or management. A couple of members of staff were often rude to me. One particular member of staff would react when I asked for help, or even for a spoon to feed Mum (as I was not allowed in the kitchen). “What do you want now?!” or “You’re a f***ing pest, ain’t you love”.   Some members of staff often intimated “if you aren’t happy … why don’t you move her?” There was a constant threat of eviction, and a letter sent to Social Services regarding a requested increase in fees, suggested that if the fees were not paid and back dated, then Holly Lodge may no longer be able to accommodate Winifred Dey.

My recording of Mum walking with the frame was shown to the Occupational Therapist and to the Care Worker at Social Services. Despite the atmosphere at Holly Lodge, I was constantly considering Mum’s ‘best interests’ and, therefore, I offered to have a meeting with management and discuss the matter with mediation. My offer was refused.

Mum was eventually evicted in July 2018 and has been moved to a wonderful home on the Isle of Sheppey, Kent. I am delighted to find this little pocket of excellence. It is a much longer journey for me, but I have enough confidence in this home that I won’t need to visit every single day.   The food is very good so I just take ‘treats’. It is very well led. There is a huge activities programme, headed by an excellent AC. They employ highly trained staff and they aim to maintain independence, where possible. Mum has been encouraged successfully to feed herself (taking into account good and bad days) and she is beginning to stand again, occasionally, without assistance, having been wheel chaired for so long previously. My aim is that she is able to transfer, at least, in order to partake in more of the trips on offer at this home. This home is rated ‘good’!

The CQC awarded ‘good’ in every category to Holly Lodge last year, despite apparent complaints. My experience is quite different. Care is good but training in dementia and handling needs to be updated. (Staff often shout at residents (living with dementia) as if they can remember what they have been told; it is poorly led; activities are almost non-existent and, quite, frankly regarded as unimportant. The board on the wall sets out a whole host of fictitious or impractical activities; understaffing; food quality and quantity is often poor in the extreme.   The ‘unannounced’ CQC visit was clearly taking place just before Mum left. There were signs of it everywhere. The ‘best china’ came out! I don’t know the result but it must have been ‘good’ because an influx of new residents arrived shortly thereafter.

Because of my experience with Mum, I strongly believe in installing CCTV cameras in all care homes throughout the UK.

Joy Dey is a 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 almost daily. Winifred was diagnosed with Alzheimer’s in 2008.

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Image copyright: Joy Dey

Advocacy, Inspiration, Life & Living, Music, Videos

the #CMAHealthSummit jam band featuring @Cmdr_Hadfield on guitar & vocals

It may seem like this post has nothing to do with dementia care advocacy, but it does, trust me. All will be revealed in the fullness of time…

In the meantime, enjoy former astronaut turned author and inspirational speaker Commander Chris Hadfield (on guitar & vocals) as he covers Piano Man with family physician Dr. Jeff Dresselhuis (on keyboards) and the #CMASummit2018 “jam band.”

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Advocacy, Death & Dying, Life & Living

the truth behind my mother’s death: august 16, 2016

A blossom fell from off a tree, it settled softly on the lips you turned to me. The Gypsies say, and I know why, a falling blossom only touches lips that lie,” Nat King Cole crooned from the CD player beside Mom’s bed.

She roused slightly and mumbled a bit when I walked in, and I tried to make some room for myself to sit beside her on the bed. I sang along to the next songs on the disk: Ballerina, Mona Lisa, Walking My Baby Back Home, and Sentimental Reasons, songs I hadn’t known existed before I started listening to “Nat” with Mom in the fall of 2011. We had listened to and sung these songs together hundreds of times since.

Mom lay there quietly, a blank-ish look on her face. Her eyes were half shut.

“Would you like me to read you a story Mom?” I asked when Nat had finished his gig. No response. “How about Jillian Jiggs, Mom?” No answer.

“Let’s give it a try, I said. I read her Jillian Jiggs. She was silent at the parts where she usually chimed in with the rhymes. “Are you okay Mom?” She replied with a barely audible “Yeah.”

Over the next twenty minutes or so, I asked all the usual questions at intervals (How are you feeling? Are you tired? Do you want to go to sleep? Can I get you some water? Are you hungry? Do you want a cookie?). They elicited little if any response. At one point, I got her to drink some juice, which she consumed in several long drafts, just as she had done in the days prior.

“You were thirsty Mom,” I said. After that, I too fell silent. I read a book I’d brought along with me in case she was asleep. I don’t remember what it was.

“Mom,” I said after sitting beside her for another twenty minutes as she drifted in some in-between world. “I’m going home now. You stay here and rest.”

No response from her side. I gathered up my stuff — the book, my purse, and my iPhone.

“Take care,” I whispered in her ear just before I left. “I love you. I’ll see you tomorrow.”

On the way out, I stopped to talk to Roger,* his mother, his aunt (who was also a resident), and his aunt’s daughter. They asked me how Mom was. “Not great,” I said. They commented on the strange tilting of her head, asked what caused it. “I think it’s the meds,” I said.

“Did you hear Ellen* died?” Roger asked. “Rebecca’s* sister.”

“No! Ellen was in perfect health.” I was stunned.

“She fell at home,” Roger said. “They didn’t find her for a few days. Rebecca fell the other day too.”

“How could Rebecca fall?” I said. “She’s got that table tray across the front of her wheelchair. She’s locked in.”

“They were moving her, using a strap of some kind, and the strap broke.”

“Oh my God.” Poor Rebecca.

“It’s like your Mom,” Roger said. “Your mom was in the washroom. So why was the caregiver on the other side of the room? She should’ve stayed with the patient.”

I must have looked confused because Roger continued: “When your mom fell…”

“She was in the washroom?” I said.

“The caregiver was over by the window, the far window,” Roger said.

The far window was diagonally opposite the bathroom in a corner of the double room Mom shared with another resident. If the caregiver had been at the window, and Mom had been on the toilet in the bathroom, they would have been about twenty-five feet apart, and not within a direct line of sight. I cast my mind back to the day of the fall.

“Your mom had a seizure this morning. The caregiver tried her best to catch her before she fell, but she didn’t get there in time,” the charge nurse  told me on the phone. The caregiver tried to “catch” her? She didn’t get there in time? Where was she? WTF?

“She was on the toilet?“ I said to Roger to confirm.

“Hmhm.” Roger signalled his agreement. “You knew that didn’t you?”

“No I didn’t,” I said. “They didn’t tell me. They said it was just after her morning hygiene care. So I was under the impression that she was in her wheelchair. But she was sitting on the toilet, and the caregiver had left her there?”

“She was in the bathroom,” Roger said. “I assume that’s why she tried to get up…”

“They told me she had a seizure,” I said.

“Not at all,” Roger said.

I wanted to make sure I had understood everything clearly, so I repeated it: “So you heard that she was on the toilet, she stood up and then she fell? You heard nothing about a seizure?”

“Not a word.”

“Who told you?”

Roger gave me the name of the person who had shared the information with him.

Now I could piece together what had happened: Mom had been left alone sitting on the toilet. She had tried to stand up and walk on her own; she fell; and then she may have had a seizure. The caregiver had been unaware of what was happening until she heard the sound of Mom hitting the floor or the sink or the towel rack or her wheelchair or whatever, and then, more than likely, Mom screaming in pain and fright. The caregiver had dropped whatever she was doing, and rushed to find Mom already on the floor in the bathroom or maybe just outside of it. A part of the information that had been given to me may have been technically true, if Mom had indeed had a seizure after she fell.

But if she did have a seizure, it didn’t happen “out of the blue” as had been implied. If she’d had a seizure, it had been caused by a fall in which she hit her head, and broke her right arm. The fall had been the result of being left alone on the toilet, which should never have happened because she wasn’t able to walk on her own anymore. She wasn’t able to walk on her own anymore because the dementia jailers didn’t want her to walk on her own as it was inconvenient for them, and so they sedated her with antipsychotic drugs (using “behaviour” as an excuse), until she was catatonic for five hours a day, and when she was awake her balance was so precarious, also due to the drugs, that she was eventually confined to a wheelchair. Because she was confined to a wheelchair, and no one but me and Sally* and Ingrid* helped her to get up and walk, she lost the ability to do so, and that’s why she had fallen in the bathroom trying to get up from the toilet where a caregiver had left her alone knowing full well that she frequently tried to stand up despite the fact that she couldn’t do so without assistance.

Of course we’ll never know one hundred percent for sure what happened in Mom’s room on the morning of July 26, 2016, because there were no witnesses. Nor was there a CCTV or video camera to record the sequence of events.

“I’m glad you told me,” I said to Roger. “I knew they had lied to me. Why can’t they just tell the truth? It’s beyond me.” It was a rhetorical question. But Roger answered anyway.

“Because they don’t want you to know the truth. Because they’re protecting themselves. You’ve gotta come in every day,” Roger said. “And even then, you can’t keep track of everything.”

Mom died on August 17, 2016, the day after Roger told me what he’d been told about her fall three weeks before. I haven’t seen or spoken to him since, but I’m thankful to him for giving me the missing piece of the puzzle of how Mom came to be so battered and traumatized.

Mom lived with Alzheimer disease, but she didn’t die from Alzheimer disease or even of the complications of Alzheimer disease. The July fall and the resulting injuries weren’t the real cause of her death either — they were the almost inevitable culmination of four years of neglect and abuse.

The truth is, Mom died of inadequate institutional dementia care.

the dystonia did us in: august 15, 2016

dying with my mom

the beginning of the end: july 26, 2016

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Advocacy, Death & Dying, Life & Living

the dystonia did us in: august 15, 2016

Six days earlier, Mom had told me she was comfortable with her chin to her chest and her eyes unable to shift their gaze from the floor. Three days earlier, she had said she was comfortable with her head tilted back, eyes permanently fixed on the ceiling. But on August 15, 2016, Mom was uncomfortable, and I was at a loss.

Her body was again pulled into the shape of a question mark by a condition called dystonia that was almost certainly a result of the prolonged and inappropriate use of  the antipsychotics risperidone and quetiapine, which she had been forced to take against her will and mine in dementia jail.

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Writing about this abuse enrages me, even though it’s been three years since her death. It was so cruel and unnecessary.

Besides the contortion of her neck and upper torso, the lower part of her left leg, her ankle and her foot were severely swollen. The wound on the same leg was as disgusting as it had been two days prior, and her broken right arm was still in a sling hidden beneath her shirt. I tried my best to help her, but there was nothing either of us could do, much to our mutual frustration:

The one thing I could do was to get her some juice and help her drink it, which I did. She sucked down two full cups through a straw. She must have been parched. I sang several songs to her, and she joined in for a line or two on each one, but clearly it was difficult. It’s challenging to breathe, let alone sing when your chin is on your chest and your windpipe is constricted:

At one point I asked Mom if she could spell the word “box.” B-O-X she said, pretty as you please. The irony of my choice of words comes back to haunt me now.

We spent the better part of the hour and half we were together that day in silence. The dystonia got the better of us.

“I’m going to put this blanket in your room Mom,” I said when I took her back up to the second floor and left her with one of the caregivers.

“Bye,” I called over my shoulder as I walked down the hall toward her room.

“Bye,” Mom said softly.

one last sing-along: august 13, 2016

the beginning of the end: july 26, 2016

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one last sing-along: august 13, 2016

Mom was in bed when I arrived on August 13, but she was articulate, alert, responsive, and in good spirits, despite the fact that her speech was slurred just as it had been a few days earlier.

When I complimented her on her hair and told her she was beautiful, she took exception:

Mom’s feistiness meant it was a perfect day for Eric to come over. I called him immediately and then told her the plan:

Two caregivers helped me move Mom from her bed to her wheelchair, and I took her downstairs to have tea and chat with Shirley while we waited for Eric to arrive. We had ginger snaps, and talked about the weather.

Eric brought his guitar and we sang a whole whack of our favourite songs: Mrs. Brown You’ve got a Lovely Daughter, I’ve Been Working on the Railroad, Ain’t She’s Sweet, ’Til There Was You, Rock Around the Clock, Oh What a Beautiful Morning, Clementine, Somewhere Over the Rainbow, How Much Is that Doggy in the Window?, I Wanna Hold Your Hand, Mona Lisa, Goodnight Irene, and Would You Like to Swing on a Star? Mom knew some or all of the words to every one; I captured a few moments on video:

We were so lucky to have had Eric and his healing music during the last four years of Mom’s life. I will be forever grateful for that.

like puppets on a string: august 12, 2016

the beginning of the end: july 26, 2016

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