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 ❤


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500+ reasons we need to do something about widespread neglect and abuse in long-term care in canada (and around the world)

Actually, there are probably thousands of reasons, or maybe even tens of thousands, but there are at least five hundred that I know of — each representing someone who once was, and perhaps still is, a living, breathing human being who was denied or is being denied his or her rights.

Reason #1
The number one reason for me is my mom. She was neglected in various ways, and abused by being administered antipsychotic drugs she didn’t need or want during the four years she spent in a Quebec nursing home. The neglect and abuse culminated in her death in August 2016.

I advocated tirelessly for better care for her during her four years, and, as a result was vilified, ridiculed, disbelieved, slandered, and punished – just as many other dementia and care advocates are. Now, hopefully, the tides are changing. Family members and people in so-called “care” are joining together and saying enough is enough.

Reason #2
Lori Dekervor’s dad Arthur Ross; he died in excruciating pain because workers at the long-term care facility where he resided failed to provide the care he needed after a fall. Like many cases of elder abuse, this one may have gone unnoticed had daughter Lori not found (almost by accident) a stinking, gaping, infected hole at the base of her father’s spine.

The literally hundreds of other reasons comprise the cases of abuse and neglect that have caused suffering and death in long-term care in the past several years alone.

Here are a handful from the scores of examples worldwide:

Francis Yorke found cockroaches in her mother Margaret’s room – even in her bed. Just as I did, she frequently found her mom in wet or soiled incontinence briefs when she arrived for a visit. Margaret eventually died of a UTI. See more in the W5 video below.

Joy Dey’s mom Winnifred was neglected in three separate facilities before Dey found a good one.

Betty McTay’s mom, Edna, who was living in a long-term care facility, died of starvation.“ I think it’s criminal that these places are getting away with this,” McTay tells Sandie Rinaldo in the W5 video below.

Judy Berry’s mom Evelyn Holly was kicked out of twelve “care” facilities in seven years. Berry was so angered that, after her mom died, she opened her own care home, which she ran for sixteen years before becoming a dementia care consultant.

Salim Younes noticed bruises and cuts to his father’s head and legs, as well as significant weight loss; his complaints fell on deaf ears. So he installed a video camera in his father’s room. See what he discovered here.

Family member advocates in Quebec and Ontario have joined together in two separate legal actions to hold long-term care facilities accountable. I am part of one in Quebec, which currently has more than 300 complainants; and Lori is the driving force behind another in Ontario, which currently has more than 200 complainants. The latter is being covered by CTV’s W5 in shocking investigative reports such as the one below, which includes confirmation from a care worker (others have also spoken out in Ontario) of the deplorable practices that may be found in many facilities:

The surprising part about Dekervor, and the more than two hundred families who have joined her to mount a case against LTC giants Revera, Extendicare and Sienna, is that she and they have come forward. I believe elder abuse is pervasive in Canadian long-term care. The problem is, it’s also hidden, and thus hard to fight. Whistleblowers are few and far between and family members often either don’t recognize abuse if they see it or fear reprisals or even worse care if they rock the boat. Those who do complain have a hard time being heard and making their stories stick because facilities and their “experts” hold all the cards. Think David and Goliath without the happy ending.

Fingers crossed things are changing… #FightTheGoodFight

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

shift the culture, stop the bullies

Kirby shared this:

I agree with you. The biggest abuser in my dad’s care home was a leader, the union shop steward. A little woman who wielded a lot of power; she intimidated staff and residents as a psychological bully. I made arrangements with the Director of Care to keep her out of my dad’s room for 10 years, they complied. Dad was one of the lucky ones. Apparently, she was an excellent shop steward, and no one felt they could fill her shoes. But they all knew how she bullied residents. They feared her. Perhaps an unusual case but…there are many layers. A shift in culture would go a long way in removing the label of protectionism. Perhaps this is already happening. Yes, values at the top are key within the home and beyond...”

You are so right, Barbara, it’s often a case of power and control…

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PR: should alzheimer’s advocates be doing it for #BIGpharma?

“It enrages, sickens and saddens me when I see Alzheimer’s Disease International promoting Eli Lilly and Janssen R&D/Johnson & Johnson,” I rant in an email to a fellow dementia care advocate/activist on the other side of the world. Half a planet separates us, but my gut tells me we’re on the same page. My gut is right.

“It f*****g sickens me too!” she replies in short order.

The subject of our joint upset is “Every Three Seconds,” a two-hour “documentary” produced by Alzheimer’s Disease International (ADI), in partnership with ITN Productions.

The “documentary” comprises a total of thirty-five four- to five-minute videos; they are divided into three sections. Topics range from “maintaining quality of life” to “person-centred care.” The videos are in a news-magazine-like format to give the impression they are, well, news. It’s a clever way to camouflage the fact that the “documentary” actually features sponsored content from “leading academic, research and care organisations,” which means the corporations and organisations paid to be in the “documentary,” which means it’s not a documentary at all; it’s an advertorial.

Noteworthy among the participating sponsor/advertisers are two of the world’s biggest drug companies: Eli Lilly and Janssen Inc. a pharmaceutical company of Johnson & Johnson. Each has its own five-minute video in the larger advertorial.

“Making medicines that help people live longer and healthier lives is what the Eli Lilly company was created for, and working on Alzheimer’s disease has long been a priority,” a “reporter” gushes at the start of the Lilly commercial, which, predictably, goes on to heap praise on the #BIGPharma giant.

The four-minute video doesn’t mention that Lilly is currently the largest manufacturer of psychiatric medications in the world; it produces Prozac (fluoxetine), Dolophine (methadone), Cymbalta (duloxetine), and Zyprexa (olanzapine), an antipsychotic that is given off label to people who live with dementia.

Meanwhile, it leaves out a whole lot of relevant and important information. For example, it doesn’t mention that:

X olazapine (Zyprexa) is not indicated nor approved for older adults who live with dementia (see the Lilly’s own information on the drug here.

X older adults with dementia who take olanzapine may experience the same kinds of side effects as those of other antipsychotics such as quetiapine (Seroquel), risperidone (Risperdal), and haloperidol (Haldol).

X in 2009, Eli Lilly pleaded guilty to actively promoting Zyprexa for off-label uses, particularly for the treatment of dementia in the elderly. The $1.415 billion penalty included an $800 million civil settlement and a $515 million criminal fine, the largest ever in a healthcare case and the largest criminal fine for an individual corporation ever imposed in a US criminal prosecution of any kind (as of 2009).

Nor does it mention the fact that Lilly ‘threw in the towel’ on its most recent Alzheimer’s drug research in June 2018.

The five-minute Janssen commercial, which is the tenth in the series of thirty-five videos, begins with a short intro that leads into this statement: “Research into dementia and Alzheimer’s disease has certainly come a long way in recent years. That’s in large part due to new technology, and also a greater conversation between scientists and the wider community. Leading the field is Janssen Research and Development, one of the pharmaceutical companies of Johnson & Johnson, whose neuroscience teams are researching how to stop or slow the progression of dementia.”

The reporter goes on to “interview” three Janssen executives who not surprisingly talk about “promise,” “potential,” and collaboration. On the plus side, Janssen is at least transparent about its sponsorship of the video:

What the video fails to talk about is the fact that the artificial construct of “behavioural and psychological symptoms of dementia,” otherwise known as BPSD, was adopted by the International Psychogeriatric Association (IPA) under an “educational” grant from Janssen-Clegg in 1998, at which time Johnson & Johnson was ramping up sales and marketing efforts for Risperdal, an antipsychotic drug it manufactures and for which it was then seeking new markets.

Johnson & Johnson has since settled thousands of cases involving the illicit promotion of Risperdal, (which is now “black boxed” in the US and other countries for use with people living with dementia), including Department of Justice (DOJ) civil and criminal complaints, for a total which was close to US $3 billion in 2015. Here are some additional details from the Consumer Safety Organization, which is run by several law firms keen to litigate:

“Through its subsidiary Janssen Pharmaceuticals, Johnson & Johnson tried multiple times in the 1990s to gain approval [to use Risperdal to treat adolescents and older adults], without success. But despite this, marketing efforts by J & J specifically targeted these groups for off-label usage. It encouraged the use of Risperdal…by geriatric dementia patients. It provided kickbacks to physicians who prescribed the drug, held golf tournaments, and provided other benefits to expand their market. Targeting seniors, J&J engaged in profit sharing with Omnicare, one of the largest nursing home pharmacy systems in the U.S.”

[In 2012], the U.S. Department of Justice (DOJ) levied a $2.2 billion fine against Johnson & Johnson and its subsidiary Janssen Pharmaceuticals. The core reason for the fine was Janssen’s marketing and sale of Risperdal and other drugs (Invega and Natrecor) for unapproved uses.

According to the DOJ’s public statement, the drug maker also had entered into an illegal kickback scheme with Omnicare Inc., a pharmacy that specializes in providing drugs to elderly care and assisted-living facilities. The $2.2 billion fine constitutes one of the larges healthcare-related fraud settlements in the history of the U.S. Even so, it is only a fraction of the $30 billion J & J had made from sales of Risperdal at the time of the settlement.”

The way companies such as Lilly and Janssen push their drugs to physicians and geriatricians who then prescribe them to people like my mom who lived with dementia makes me sick, and very, very angry. It makes me even angrier that despite the billions of dollars in fines, it’s still business as usual for #BigPharma, and that means hundreds of thousands of people who live with dementia are still being prescribed dangerous and debilitating drugs off label (i.e. despite US FDA and other countries’ black box warnings).

This is what being inappropriately prescribed Risperdal and Seroquel (which is manufactured by AstraZeneca*), did to my mom:

That’s why it infuriates me when an organization such as ADI, which is meant to advocate for people who live with Alzheimer disease, broadcasts the marketing messages of drug companies that are responsible for the pain and suffering of hundreds of thousand of older adults and people who live with dementia. By doing PR for #BIGpharma, ADI is indirectly endorsing the use of these drugs and feeding into the profits being reaped from their sales at the expense of vulnerable people living with dementia.

Alzheimer’s disease didn’t steal my mom from me, not at all, antipsychotic drugs and the neglect and abuse she endured in a dementia jail did did:

Dementia doesn’t rob someone of their dignity. It’s our reaction to them that does.

Accepting funding from pharmaceutical companies is a massive conflict of interest for Alzheimer’s advocacy organisations (read more about that here). Shame on ADI for producing, promoting and publicising corporate BS as if it were truth. Perhaps more important, shame on pharmaceutical industry executives worldwide for profit-making on the backs of the vulnerable older adults who live with Alzheimer’s disease and other types of dementia, making them sicker than they already are and even killing them for the sake of a making buck. Or, to be more accurate, billions of bucks.

A prominent clinical pharmacist in psychiatry summed it up like this in an email:

“The multinational pharma groups are huge, slick, polished and ruthless. They present themselves as organizations with an interest in health, [when] their actual focus is to make enormous amounts of money.”

Indeed. And that’s precisely why Alzheimer disease advocacy organisations such as ADI shouldn’t be partnering with #BIGpharma, endorsing them in any way, or — God forbid — doing their PR for them!

#BIGpharma doesn’t need or deserve our support.

*Note: As Lilly and Janssen have with Zyprexa and Risperdal respectively, AstraZeneca has also settled lawsuits worth hundreds of millions of dollars with respect to promoting the off-label use of Seroquel and other medications.

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how many are haunted?

When you tell people that care homes/nursing homes/long-term care facilities ban family members or threaten to ban them or restrict the hours they can see their loved ones, people are either shocked, or they don’t believe you, or they think the family members deserve it for being troublemakers.

This is what I know for sure: care facilities hold all the cards, and very rarely do family members deserve to be banned or threatened. It’s all about power and control.

I was repeatedly threatened with being denied access to my mother as a direct result of advocating for better care for her. For the last 15 months of her life, my visits were restricted to between 1 and 3 p.m. when she was “asleep.” There’s no doubt this was abuse.

Cases such as mine are more commonplace than you might think. For example, Charlotte Williamson, who lives in the UK, was prompted to share her story after reading Rachel’s tale of being bullied and banned:

“It is a heartbreaking, and sadly, oh-too-familiar story. My Mother was in care homes for nearly nine years. When I read the list of 25 things that are considered abuse, I cried. Many of them were daily and ongoing and par for the course where she was. We as a family fought constantly to have them addressed. We were labeled a troublesome family from the start and constantly made to feel we had no right to complain on behalf of our mother. There was 
also the underlying fear she would suffer more as a result of our “interference.” Threats were made about her being moved or certain family members not being allowed to 
see her. This fear was exacerbated by an incident that happened to another person who was banned from seeing her mother for a year because she complained about an incident she witnessed that concerned our mother and another resident. It upset her so much that she complained about it, and that ended up with her being cruelly punished like that! Tragically, I did not learn about that until a long while afterwards and it was not possible to right the wrong that had been done to her and her mother.
 Her mother has since passed away, and so has mine, but I am haunted by many things I saw during those years.”

If you have had (or are having) a similar experience, please share it so that other family members are also encouraged to speak out. It’s the only way we are going to create change around this abusive practice.

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bullied and banned: rachel’s story

Rachel’s dad

Rachel* sent me the first part of her story at the end of July 2018. She told me how the residence in which her father lived had banned her from seeing him for six months because she had advocated for better care. I asked if I might share her story on because there were so many parallels to my own. She answered:

“Yes, Susan. PLEASE SHARE MY STORY. I want the world to know the painful things that these places do behind closed doors. They put all the blame on caregivers, and yes I KNOW there are a lot of bad ones out there, but until we start looking at upper management, facility owners, our own government, etc. Nothing will change. It’s all the business of the rich and powerful, from health care conglomerates, government, law enforcement, pharmaceutical, and insurance companies — THEY’RE ALL CORRUPT!  Yes, Susan, share my story.  I send you and you family all my best, as well as to your wise and thoughtful readers. Live well, Rachel”

Three weeks later, I sent Rachel an initial draft of the first 500 words based on the raw material she had given me, and asked her if she still wanted to go ahead. In the meantime, the ban on her being able to see her father had ended. I didn’t hear from Rachel for two weeks. Then, on September 6, she wrote back:

“Susan, oh, you’re so kind. I’m sorry I didn’t get back to you sooner. I’m not doing well with texting lately. I so much would rather talk to you. So much has happened since I last talked to you. My No Trespassing expired, and for a moment I thought that was good, but I know nothing has changed and maybe this time I’ll walk into a trap. My brother goads me through texts to go visit dad, “Your trespass was up on Aug. 16,” he texted. (Remember, my brother and I DO NOT get along). I’m thinking if I go in there, I may be walking into a trap. Maybe this time I may be arrested!!!! With the lies that DON [Director of Nursing] told about me to her staff and police, falsifying records, I wouldn’t put anything past her!!!

Well, it was agony just waiting around for some sign that it would be okay to go in. My brother texted me with hostility: “I don’t see why you don’t go in to see dad. He’s had falls lately and not doing well.” This hurts me for my precious dad, I just don’t want to be walking into a trap!!!

I found a minister, who said he would go with me, and be my witness that I would be doing nothing wrong. Just going in to see my dad and then out, not even talk to anybody else. That WAS the plan. It didn’t work out that way. On Sept. 4th I saw my very doped up, incoherent father for maybe 25 minutes. He didn’t even seem to know me. I struggle to bring myself back to his mind. Finally at one point he stuck his head forward and motioned for me to help meet him with a searching kiss. This broke my heart. I began to cry.

The nurse manager (large man) peaked his head in around the door. Soon after the police were in my dad’s room, telling me to step out into the hall. He informed me another Trespassing will [be put on] starting today, it will be for a year, and the reason for it is that I have (been accused of – more lies) “threatening messages to staff, previous having issues w/staff. Staff does not feel safe with her in building.”

I was in shock. I looked back for the last time at my dad. The officer kept demanding I move myself out of the building. The meek pastor said we did nothing wrong. I pleaded with the pastor not to talk to the officer, as they twist, and turn things around, not to be trusted. I don’t think he had as much “experience” with law enforcement as I had, by this time. After all, he said he had nothing to hide, and that he was just being honest. I laughed to myself. We made our way towards the main entrance. The tall male officer continued to tell me more belligerent things about my behavior and kept on my heels to get out of the building.

Once I was out, they separated myself and the minister. They talked to him in the lobby, while they threatened to put me in jail if I reentered the building. This was also a clear way to have a little private conversation with my witness.  Once the minister came out, he told me “you better get yourself a lawyer.” (Like as if I haven’t been trying to get one since the first Trespass???) (Sorry, more sarcasm).

I’m very weak these few days, with a heavy broken heart. The lies of the nursing home, the numerous, rampant fraud, falsifying records, abuse of residents, attacks on my character, the lies said of me, the bullying by my brother who is in alignment with this DON (for his own $ agenda), the struggle to get to my dad with the last and only life line to him I have left. But now he’s so over medicated, and in pain from repeated (not reported to ME, but to my brother) falls. I am made to look like a monster to the staff, and to all who give that DON their respect for her position of authority. I thought about it today, all of it. The very things she accuses me of doing, SHE HAS DONE. I know that I am not her first victim, nor will I more than likely be her last. She is relentless with her attacks. For her it is like a sport, and she doesn’t stop until she obliterates her opponent. Susan, thank you for all your Loving kindness. My best to you, your family, and everyone who encounters a psychopath.”

I cried as I read this, having lived Rachel’s frustration and despair myself. I emailed her back immediately, asking her if I could share this part of her story in her own words. She answered:

“Susan, getting tired these days. Still spinning my wheels. Getting much of no where. You can run my story. By now it may not be making much sense. I’ve come to believe that the institution’s that are there to “do no harm” “serve and protect”….. really don’t. I don’t believe our government is for the people. I’ve come to the point that I almost believe that it’s these big companies that are our government. If you’re poor, where are your rights? I heard the other day that the court, legal system has always been the rich man’s game. Well, perhaps that’s true, because I just can’t seem to get justice for my dad. Susan, do with my story as you wish. I’m tired, and I have faith in you. I know that you are a kind person, and I thank you for your help in getting the word out. All my best, Rachel”

Sadly, there are thousands of stories like Rachel’s (and mine!), and there are tens of thousands more that don’t get to this point because family members keep their mouths shut about neglect and abuse because they fear (justifiably so) being banned from seeing the person they love. Instead, they are torn apart witnessing the torture; they know if they “complain” the situation will get worse. Imagine the heartbreak of that.

Telling your story helps create change. Please share yours if you have one.

*Not her real name.

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somebody stole my mom

Shirley Ann Snow, Janet Ng’s mother, with her beloved Kitty Cat only two weeks before Shirley died in December 2016.

Janet Ng was the primary care partner to her mom, Shirley Ann Snow, who died three months after my mom Patti died. Janet, who lives in Texas, has been following for a long time. She has been feeling increasingly compelled to share her and her mom’s story. It looks like she’s ready to start with this guest blog post.


My mother was stolen from me, one piece at a time, right out from under my nose. I didn’t see it until it was too late.

Dementia didn’t steal her. Nor did old age, or the natural progression of a chronic disease. Care stole her. Institutions stole her. The medical profession twisted and mutilated her until her organs shut down one by one over a period of five years. They stole her in bits and pieces, chipped and chiseled from the healthy person she had once been.

Looking back, it amazes me how I missed what should have been the most obvious clues. Like many other families who are misled by lies, cover-ups, and subterfuge, I trusted others’ judgment, their words, and their promise to do no harm. I believed their “benefits outweigh the risks” scams, their smiling facades, their tricks and their schemes. I was lulled into complacency and falsely believed that what they did was best for her when actually it was the worst. Now I am the one left with the grief and guilt for allowing them to murder her before she was meant to die.

Miraculously, Mom was alert, communicative and “with it,” until the very end. It was only during her last three days, when she became very ill, that she was unresponsive. Until that point she always knew me, and we were able to talk to each other. Amidst all the hurt and devastation, that at least was a blessing – something I can cling to. Our times together are memories I will always cherish despite everything else.

We trust doctors and nurses because we see them as omnipotent gods whom we mustn’t challenge. Even when our gut tells us things aren’t right, we dismiss our doubts and instead trust their so-called wisdom and experience. We become like flocks of sheep that only wake up when it’s too late. And by then, our experience means nothing because our loved one is gone. We are exhausted and depleted by grief, with no emotional energy left to speak out for the sake of others who are trudging the same tragic path, that I have come to believe is criminal.

It has taken me almost two years following my mother’s death in 2016 to have the stomach to think about the slow train of legal euthanasia she was on, much less write about it. But I think it’s time to speak out, and to tell her story. Why? Because I see more and more families unknowingly boarding the same train. It’s time to blow the whistle, and stop the train.

I will write about her journey into darkness, a journey that was imposed on her by the very profession that was supposed to succor and heal her. Perhaps the most frightening part is that her story is not unique, although it may have been more horrendous because she was a fighter, and it may have been tougher for the system and the people in it to collectively break her down.

I pray I’m able to fully relive her experience on paper, and that it doesn’t become too excruciating for me to recall. My hope is that the telling of it will help others avoid the same hellish path.

Janet Ng, September 2018.


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7 reasons i post “ugly” pictures of my amazing mom on social media

My mother was strong, courageous and determined. She was a fighter. She was an inspiration. She was beautiful.

Some people are offended by what they judge to be inappropriate pictures and videos I post of my mother online – images of her looking battered and bruised, drugged and zombie-like, or in undignified circumstances or situations. They say it’s disrespectful for me to make public what they deem should be private.

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:

1 ) To increase awareness

People are unaware for the most part about what really goes on in long term care facilities in Canada and around the world, because neglect and abuse, particularly of vulnerable people such as those living with dementia remain hidden and unreported by friends and family, and by facility staff. It’s time elder neglect and abuse were brought out in the open.

2 ) To break the silence

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.

Here are the short videos:

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Advocacy, Death & Dying, Life & Living, Real life, Toward better care

dead to the world: august 5 & 6, 2016

“She’s dead to the world,” Mom would say of any small child she found sound asleep. It was one her favourite expressions along with “Don’t tell me!”, “Heavens to Betsy!,” and “I’ve got to get going.”

Dead to the world, figuratively, not literally, is how I found her on August 5, 2016; I tried to gently rouse her:

It became immediately obvious that she wasn’t going to waken, so I sat beside her for a half an hour, holding her hand in the silence. At least there’s no TV blaring, and she’s not in pain.

The situation was unchanged the following day, when I again sat beside her for close to an hour before leaving her to sleep in peace.

Earlier in the week, I had asked Eric to come for a music session, hoping the guitar and some singing might buoy her spirits. But I called and cancelled when I saw how she was. “Maybe another day,” I apologized on the phone.

There would indeed be one more day when the three of us would share a final hour of music together. But it was destined not to be August 6, 2016.

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Image copyright: shaiith / 123RF Stock Photo

Advocacy, Real life, Toward better care

sometimes nothing works: august 4, 2016

“Your mom’s in the sunroom,” a caregiver told me when I arrived on the second-floor.

“Thanks,” I said, and walked down the hall past the nurses’ station.

Mom was lying in a recliner with a pillow under her feet. Crusty yellow something ringed her mouth. Egg? A football game played loudly on the TV. In French. Another resident sat in another recliner across the room. She appeared to be asleep.

I greeted Mom:

After I cleaned her face with a warm washcloth, I tried every tool in the box to lift her spirits. I began with some apple juice in a sippy cup; she drank a little.

“Would you like some more Mom?” I asked several times before she answered.

“I don’t know, it doesn’t matter to me,” she finally said. Oh dear.

I got up and switched off the TV. We sat in silence for a while.

“Are you comfortable Mom?”

“Well, I don’t know.”

“You don’t look very comfortable. How do you feel?”

No answer.

“Do you want me to read to you?”

“Well, what would you read?”

“I thought maybe Jillian Jiggs.”

No answer. Mom stared at the ceiling. That scary fixed stare.

I read Jillian Jiggs.

“What do you think of that story mom?” I asked as I closed the book. “Is it a good story?”

“I don’t know.”

“You’re speaking very quietly today, Mom.”

No response.

“Shall we hold hands mom?”

“We didn’t hold hands before.”

“No, we didn’t. Is it okay if we hold hands now?”

No answer.

I continued sharing my news in a one-sided conversation: “It’s a nice day out there Mom, but we need rain, we haven’t had much rain lately.” She said nothing, and neither did I for several minutes, and then: “I played golf yesterday, Mom. It was very warm we had to take a cart.” I paused to see if she might reply. She didn’t. “Nevertheless, I shot a 47 for nine holes. That was good eh, Mom?”

Nothing seemed to work. On the plus side, she finally closed her eyes. I soon abandoned the monologue, and sat quietly beside her, listening to her breathe, trying not to worry about her legs and feet and the rest of her.

I’d been there about three-quarters of an hour when Nurse R. came in. She gave the other resident a pill, and then came over to us.

“Hi Patti,” she said. “Hey look at that pink on you!”

Mom didn’t stir. Nurse R. lifted Mom’s right eyelid with her thumb, applied some drops, and then repeated the process on the other eye.

“Do we know what’s causing the swelling in Mom’s legs?” I asked as she worked.

“I have no idea. I wasn’t even informed. I’ll find out,” she said, and left the room. Yeah right.

“I’m going now, okay Mom?” I said fifteen minutes later. “I’ll come back tomorrow when you’re awake.”

“Okay,” she said, without opening her eyes.

“I love you, Mom” I said, in case I never saw her again.

She didn’t answer.

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Image copyright: shaiith / 123RF Stock Photo