Emily Gagnon is a hospice nurse. She lives in Waterdown, Ontario. Her Facebook post to mark the end of National Nurses’ Week 2020 brought me to tears:
“As we wrap up National Nurses Week 2020, I’d like to share a little bit about what I do as a hospice nurse. For those of you who are not familiar, hospice is a facility where people come to live out the remainder of their days. Many of the residents that I care for have a terminal and/or life limiting illness with limited time left to live.
What I love most about hospice is watching the residents and their families surrender all of the burden they carry and make the best of the time that they have left. In my three years of practice, I’ve witnessed miracles, tragedies, beauty, pain and everything in between. Residents and their families put all of their trust in us to ensure their wishes are fulfilled and their dignity is maintained.
I am honoured to care for, help and serve the residents that come to our hospice. End of life care is my biggest passion, one that I hold so close to my heart.
I will sit with you and hold your hand.
I will brush the hair from your brow.
I will do my best to explain why this is happening.
I will tell you that it’s going to be alright.
I will comfort your family as you transition.
I will tell you when there are weeks and not months, days and not weeks, hours and not days.
I will be there for you till the very end and beyond, this is my promise.
Thank you Emily and your fellow hospice nurses. Thank you nurses everywhere.
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Nurse Émilie Ricard began her rant with a quote from Dr. Gaétan Barrette, Quebec’s Minister of Health: “The reform of the healthcare system is a success.”
She posted it on Facebook with a selfie of her tear-streaked cheeks and the caption “Here is the face of nursing.” It got more than 50,000 FB shares in less than 48 hours, and sparked Quebec nurses to take to the streets.
Many many many elderly people, particularly those living with dementia are neglected and abused in long-term care facilities as witnessed and UNWILLINGLY PERPETRATED by this whistle-blowing Ricard who works in an unnamed government-run long-term care facility in Quebec, Canada. She resides in a small city not 20 minutes from where I live.
Elder neglect and abuse probably happens just around the corner from where you live too. Soon you will be one of those neglected and abused if we don’t do something to change. People in care are neglected and abused in part because the people who are supposed to care for them are also neglected and abused. The whole damn thing is just wrong wrong wrong.
This is my own translation of what Ricard said (the original post in French follows):
Hey, my lil’ doctor. I don’t know where you get your information, but it has nothing to do with the reality of nursing in Quebec. Again this morning I finished my shift emptied and exhausted, having struggled through the night like a madwoman. Why? Because I am the only nurse on the night shift. One charge nurse reponsible for 70 to 76 patients, supported by a team of three: an auxiliary nurse and two personal care workers.
This is the third night in a week that I’ve had patients with complications, and when I say complications, I mean serious ones. Serious enough that the two before tonight died in the following days (I know death is inevitable for people in long-term care, but still!). On the night shift, I’m ALONE to managed it all. It’s part of my job to intervene and handle situations like these, but usually we do it in a team, not alone. The needs of the other patients don’t stop due to the special needs of one; the shift doesn’t have a pause button because one patient has complications. All the normal stuff keeps on ticking along. I have so much stress that I am cramped all over my back, enough to prevent me from sleeping. I don’t want to go to work because I dread what awaits me. I’m not lazy, but there’s only so much one person can do, and being run off your feet for 12 hours straight night after night is exhausting. When I get home, I’m crying with fatigue.
I don’t have time to help my personal care workers change the incontinence briefs of some patients who need two people to change them because I’m “tied up” with the one with complications. So these other patients who need to be changed must stay in their urine / stool as they can’t be changed by one care worker alone. Then I have to report at the shift change that not all the patients could be changed due to the situation. That means the day shift starts in deficit, maybe the are already short-staffed by one or two care workers, and now they have more work than they should because we couldn’t get to everyone. I leave my shift feeling awful because the patient with complications is unstable, which is unsatisfactory, and on top of that I couldn’t get my regular work done.
Ha! On top of that, three mornings this week I couldn’t go home because there was no day nurse to take over from me. I called the staff coordinator one night to find out if it was possible to have an extra team member due to the crisis we were in. The person on the phone laughed at me. “Are you joking?” she said. “We have staff working compulsory overtime on 4 floors and you’re ask me for extra help?” Wow, nice answer. At the same time, the person on the other end of the line is also tired of having to look for replacements, to force people to stay on mandatory overtime and to be bitched at when she herself has no control. I finish my shifts wondering what else I could do in life, but I don’t know what to do other than to be a nurse, it’s my vocation and I think I’m good at what I do. I used to like what I do. But since your reform, I’ve often found myself on google searching to find how I might change careers. What’s wrong with that picture?
I would never want to see a member of my family be subjected to these conditions It’s disgusting. I am broken because of my job. I am ashamed of the poor care I give, but it’s the best I can do under the circumstances. My health system is sick and dying. I don’t think I’m the only nurse who is being destroyed by the reality of our profession, we don’t even have time to nurse anymore. Employees are dropping like flies. We are physically and mentally ill.
But hey, good thing the reform is such a big success.”
This is the original FB post containing Émilie Ricard’s message for Quebec Health Minister Dr. Gaétan Barrette:
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Phyllis Cranfield with her grandson, whom she saw for the first time on October 25, 2017, eight days before she died of a UTI.
Phyllis Cranfield was born in Ireland in 1931, and moved to England in late 1968; she birthed her son Ciaran in 1969, a daughter followed in 1973. Phyllis Cranfield died on Thursday November 2, 2017, after medical staff ignored the alarm bells Ciaran had rung over the previous several weeks.
Ciaran knew there was something wrong with his mom, just like I did on multiple occasions during the four years Mom was in “care.” But the medical powers that be didn’t listen to Ciaran, just like they didn’t listen to me. Ciaran posted his story in a caregivers group on FB, and gave me to permission to repost it here.
“Thursday November 2, 2017: My Beautiful Mum Sadly passed away today not from this horrible disease, but from the lack of care at NGH where they refused to listen to me when I said she had a UTI. Instead, they blamed her poorly condition on her dementia. Three weeks ago, they said she was medically fit and they discharged her.
The very next day I had to call the ambulance to take her back to the hospital. She was diagnosed with a UTI, and was also badly dehydrated; she was re-admitted. She seemed to be recovering well, and then on Saturday I noticed something was wrong. She was clearly ill. I alerted the staff.
Two days before Phyllis passed.
Again I was ignored. On Monday I got a call saying to get their ASAP and was told her heart rate was 188bpm and they were trying to bring it down before they moved her to the heart centre later I was told she had sepsis and they were giving her strong antibiotics, but sadly it was to little to late and she passed away at 12:50 pm today. R.I.P Mum love you always
Thursday November 3, 2017: Further to my post yesterday about my Beautiful Mum passing I collected the death certificate today and the cause of death wasn’t sepsis like I was told yesterday.
They listed the cause of death as a urinary tract infection the very thing I told them about five weeks ago it took them nearly two weeks to start the treatment, and even then they only put her on a low dose antibiotics.
My Mum’s death was so preventable. Reading this today I feel sick.
Things like this should never happen in this day and age, I know my Mum lived with dementia and of course I was prepared that one day that would take her. But I wasn’t prepared for her going from a preventable infection like a UTI.
I only wish they had listened to me.”
Phyllis Cranfield, Easter 2017.
This is a plea to LTCF staff worldwide: please listen to the ones who know their family members best. By doing so, you will provide better care, reduce needless suffering, and save lives.
Don’t dismiss, ignore, and patronize us. Don’t restrict the times we can see our loved ones, or worse, stop us from seeing them altogether. This is a form of elder abuse.
Our advocacy is an invitation to collaborate, not an exercise in finger-pointing or blame. Care partners like Ciaran and me and family members everywhere want to work with you, not against you, to create better lives for our loved ones living with dementia no matter how long or short a time remains for them. We want them to live well until they die, and we want them to die with dignity and the least amount of suffering possible. They deserve the best from all of us.
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I see all kinds of statistics and information in the backend of this blog, including how visitors get here, what they read and what they click on. Some time ago, I noticed an uptick of Pinterest referrals. I decided to investigate. What I found made me cry.
Someone had modified it to create a “funny” meme, which they had posted on a board entitled “Nursing Humour:”
My mind flashed back to a scene I will never forget: Mom in the long-term care facility doing what she could to resist taking the antipsychotic medications a nurse was attempting to give her. She sat at the breakfast table, lips pressed shut while the nurse tried to force a spoonful of pills between them. Mom finally batted the nurse’s hand away and the pills fell to the floor. The nurse glared at Mom. “That’s one way to rid of them,” she snapped before walking away, back ramrod straight. At some level, Mom knew what those meds did to her, and she didn’t want to take them. Instead, she wanted to “keep going.”
When I saw this meme, the image of which had been grabbed from my post advocating against giving antipsychotics to elderly people who live with dementia, I felt sick. I thought of the hundreds of thousands of vulnerable people who live with dementia in Quebec, across Canada and around the world who are given drugs they don’t want and don’t need, against their will, every day. It’s no joke. It’s elder abuse on a massive scale.
Then I did a little poking around on Pinterest and found more “nursing humour” memes in the same vein. It made me despondent to think those to whom we entrust the care of those we love would find these funny. “It’s just gallows humour,” you might say, “don’t let it upset you.” But I think there’s always some truth behind dark humour, and in this case it breaks my heart.
This is not to say there aren’t good, caring, compassionate nurses doing amazing work under impossible circumstances. There are. Many. I hold those courageous women and men in high esteem. And then there are the others, the ones who should perhaps rethink their choice of career.
Dementia care pioneer Teepa Snow has developed a simple technique that anyone (i.e you and me) can easily learn and use to help connect with as well as comfort a person with dementia.
Using the technique, which Snow calls “Hand Under Hand™,” can also help dementia care partners “take control” of situations before they get out of hand. (Pun intended!)
It’s also important and helpful to position yourself below the eye level of the person with dementia. If you do only these two simple things (get down and use Hand Under Hand™), life will be much easier on everyone. Guaranteed.
Remember: the purpose is to control the situation, not the person. Dementia care partners are in the process together: always do whatever you can to respect the independence, rights and dignity of the person with dementia.
In the video below, Snow demonstrates how to used Hand Under Hand™ as part of the process of helping someone to bathe.
But Hand Under Hand™ can be used in multiple ways: to help someone to eat, to walk, or even to calm down in a crisis.
I learned this technique in early 2015 when I began the process of becoming a PAC Certified Trainer. I know it works because I use it myself. I only wish it had been part of my tool kit from the start. I chose not to recertify with PAC in 2016, but I’m still a huge Teepa fan and embrace all of her techniques.
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My Alzheimer's Story 