if only they had listened to ciaran

2

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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2 Comments

  1. The more we expose, the more the collective conscience calls out in pain… this is heartbreaking. I zeroed in on your final words [“Our advocacy is an invitation to collaborate, not an exercise in finger-pointing or blame”], because this is what might help us out of the muck. We have to start to help each other, if we’re going to be of any help at all. I’m sure the finger-pointing will continue, but to what end? As Helen Garner writes in “The Spare Room”, “I had always thought that sorrow was the most exhausting of emotions. Now I knew that it was anger.”

    • I agree we must work together Lorrie B. And believe me I tried cooperation and collaboration at the start. But The Home, which I eventually began to refer to as ElderJail, experienced my advocacy as finger pointing and blaming. I wasn’t finger-pointing and blaming, that’s how they perceived it. I wanted to collaborate, they wanted to control. It was really that simple. Now, you may say that I can’t be objective about that and there are two sides to every story and… but honestly, their minds were clamped shut as tight as a drum.

      I struggle with whether my anger has more upsides than downsides or vice versa, and have still not resolved that internal debate. My anger fuels my advocacy. Without it, I wouldn’t be doing what I’m doing. What I’m doing is helping to create change on individual as well as global fronts. Would I be happier if I were less angry? I don’t think so, because I’m also happy despite my anger. Balance, as usual, is likely key.

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