Death & Dying, Family, Real life, Toward better care

if only they had listened to ciaran

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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Care Partnering, Family, Life & Living, Memories, Videos

some things never change and others do a lot

Jean & Patty short
Auntie Jean’o on the left and Mom on the right in either the summer of 2003 or 2004 – I’m not sure which.

On April 24, 2015,  I gave a guest “lecture” to third-year special care counselling students at a local community college.

April 24 also happens to be my Auntie Jean’s birthday; she died in January 2012 after she she fell out of bed and broke her hip. She had dementia like Mom did. Their younger sister Leona had it too; she died of cancer in 2006. Their baby brother Eddy has it too.This will be the story of millions more. It could lead to the downfall of our economies and societies if we don’t learn how to better deal with the disease.

This was the second time I had done such a lecture; I intend to do many more to honour my mom, my aunts, my uncle and maybe myself as well as the countless others who have dementia and the people who care for and with them. I’m keen to share what I’ve learned with others so they don’t make the same mistakes I have. Let them make new ones and pass on what they learn to the next generation. We and they will need all the help we can collectively get.

Like my long-ago public speaking courses, this three-hour “mini workshop” to the college students was jammed packed with hands-on activities that prompted them to think for themselves. One of the exercises invited the future counsellors to “play detective” and tell me as much as they could about Mom based on 1) a short bio and then 2) a series of photographs, videos and stories.

One of the videos in the second part of the exercise was the first clip below, filmed in the summer of 2003 or 2004; it’s my Mom (on the right) and her sister Jean telling me a bit about their childhood.


Does anything strike you about Patty based on what you see in the video of her with Jean? Now take a look at this clip from summer 2014 when I had her for dinner at my place:

Any similarities jump out at you? See any differences? Yeah. Me too. Here’s the thing: the people who love us, who really really love us and see us and know us, do everything they can to nurture the essence of who we are and help our spirit soar no matter where we are in our life journey. And to be able to do that for someone you love, especially when their capacity is different than it once was, is a great privilege and blessing.

That’s a pretty cool lesson in the midst of a whole bunch of shit.

Thanks Mom and Auntie Jean’o for sharing your stories and wisdom with me. I love you both.

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