living your best to the end
My big brother, John, had the best possible end

My big brother, John, had the best possible end

My bro died at home, on Palliative/Hospice Care Although we did not know it at the time, my brother’s ‘end’ started November 2018, with a brain tumour diagnosis. Surgery before Christmas that year was deemed ‘successful’ and John was in such good physical shape that he was released early. He sailed through weeks of radiation and chemotherapy with few of the expected side effects. His only physical change was that he started wearing hats. Humour was his go-to modus to get through, the sillier the better. We cheered every picture he sent us, mugging for the camera: electrodes on his head or ridiculous hospital gowns, a ‘brain fart’ toy. the tumour came back with a vengeance In August, results of an MRI were devastating. From then until he died –almost a year to the date of diagnosis – the speed of his physical decline was shocking.   It was his confused speech that led to the initial consult that led to the diagnosis, but – until August of 2019 – he was able to have a conversation, with words ‘filled in’ for him. When he lost that ability, he still hammed for visitors.  His right side was the first to ‘go’, but he still made funny hand gestures with his left hand and jiggled in his seat when bouncy music played. His wife, Susan Teskey (herself a formidable producer/director) proved an amazing caregiver who also did her best to inject humour wherever possible: each piece of home care equipment was named and formally introduced. The commode, for example, was Clarence. The high top toilet seat, Harold. She made sure his...
Ricky’s mother had a ‘good death’

Ricky’s mother had a ‘good death’

Of the three siblings, Ricky – the sole daughter – was closest to her mother, Anna. “When my marriage ended, my kids and I lived with my mother. We all adored her.” In the last three years of her life Anna- who died at age 91 – was beset by Dementia. “It was more than memory loss – it was her wonderful personality that vanished.” In spite of the pain of her beloved mother disappearing, Ricky took care of her until the end. It was an end ‘strategy’ that the sibs agreed on: no heroic measures. No CPR should her heart stop, no medications to jump-start her system, no breathing machines and no feeding tubes. “The day she passed the entire family had a get together in her room. We brought take out food and ate our picnic sitting by her saying our farewells .I returned later that evening to have time with her alone. I curled up around her, and whispered, it’s ok to go. She died later.” As spokesperson, Ricky stood firm in the face of health care professionals who repeatedly tried to sway the agreed-upon ‘natural death’ route. Afterwards, she was asked to give an interview about why she and her sibs could stand their ground.“The sibs and I did not see the point of meds that would prolong a life that was obviously ending… comfort was our priority and we felt that would be what she would have chosen had she been able.”...
A beautiful death

A beautiful death

“My mother was ‘dying’ for about 10 years – with her sickness, she seemed often on the brink of death, and then she’d rally. We’d all said our goodbyes a number of times. But on the day she actually died, my father was in her bed, his arm around her, holding on to her. He’d been in this position for a long time when my former brother-in-law came to visit. “My mother and her former son-in-law had kept up a really special relationship even after my sister had divorced him. They were very close and spent a fair bit of time together. My father would call him ‘her spiritual companion’. When he came into my mother’s room, she was looking grey and frail. My father’s arm was falling asleep holding her. ‘Can you take over here?’ he asked when former brother-in-law appeared. Take over he did, cradling my mother against him. My mother looked at him and her face lit up. Her cheeks became rosy and her eyes twinkled. She looked like a teenager again. She smiled, and took her last breath. It was a beautiful death. I was glad to have been there. Interestingly, when I was about 5 years old, I had a dream that my mother died in the arms of a younger man. It was the only such dream I’d ever had.”  ...

Personal Support Worker (PSW): caring at life’s end

Dealing with grief and End of Life as a Personal Support Worker Guest Post by Natrice Rese It’s something that you are prepared for as a student.  It is understood that as a caregiver, a PSW, you will maintain a distance, a separation, a formal kind of relationship with your clients and residents. But when you actually begin the job you quickly find out that it is not quite as easy to deal with when you can put faces, names and personalities to the residents you care for.  Close connections bring an affection for your clients and vice versa.  Personally I found it hard to be at a distance: When you give total and personal support to residents you can’t help but have feelings of friendship, protection, and empathy that is by nature what a caregiver has in his or her “toolbag”. I recall one particular lovely lady who was often in my care in the facility where I worked.   I will call her “Mary”. Mary had brilliant silver hair and very blue eyes, lots of smiles, laughs and mischievous looks. She was obviously loved by her family and had visits often. Mary was dealing with many issues: she endured a stroke that limited her movement and mobility.  She also had dementia so she needed a lot of support, smiles, hugs, and conversation. Although Mary was confined to a wheelchair she was able to roll her chair around the halls and with one hand surprisingly strong. She was as continually busy as a small child is, always on the move, always into something – often trying to exit through doors, enter...

End of Life in Long Term Care: Personal Support Workers

Personal Support Workers (PSWs) Rock and Rule Anyone who’s needed practical help with daily living when in a health situation knows that it’s not the doctor or nurse you turn to or rely on. Whether at home, or in a health facility, the day to day care delivery falls to the Personal Support Worker. In a workshop organized by the Ontario Long Term Care Association focusing on Palliaitve Care in Long Term Care – with the theme: Care for Life, I sat amongst a packed room-full of (mostly) women PSWs.  Their satisfaction comes not from having the latest medical intervention, or cutting edge equipment but rather from spending more time with their ‘residents’ than any other healthcare professional – which means knowing the small pains and pleasures better than anyone – often more than family members. I tweeted to the world:  Day-to-day efforts may seem thankless work but for the PSW this goes with job satisfaction:   In Palliative care – with its emphasis on whole person comfort and whole person symptom management – these PSWs have learned to read their residents non-verbal language: often a factor in those with Dementia. PSWs form such lasting relationships with residents and their families that they often attend the funeral and keep in touch after a residents’ death.I wonder, with so many who are in their care at life’s end, how do they cope with deaths – do they call upon social workers, chaplains or bereavement counselors? The resounding answer is: “We get comfort from our colleagues – fellow PSWs: only another PSW can understand the relationship and loss.“ I was shocked...

Things I’ve learned from dying

Living, knowing you are going to die Drawn, as I am, to learning ever more about how we die, and how ‘one’ dies, this David Dow title, “Things I’ve learned from Dying ” had me at ‘hello’ Dow – who is very much alive – is a death row lawyer in Texas . He writes beautifully about, and pours insight into the humanity of those on the row. But that’s not why I found his book so important and compelling: it’s the parallel story that I fastened on: Dow’s story of Peter – his father in law –  who died within a year of diagnosis. Throughout the sickness, its treatment and decisions about, Peter shares with Dow some light, along with the darkness of regrets, disappointments, conflicts and depression, and self-awareness. These emotions and reactions along the journey, tell an eternal story: Not wanting to lose a loved one, perhaps at the cost of the loved one’s quality of life As Peter says: “You all want me to stay alive, but that is because you want me to be in your lives. Of course that flatters me, and makes me happy and sad, but that desire does not give you a ballot, and even if it did, it is wrong to cast a vote that treats me as a means to your ends. I want to die with dignity, and you are all determined to thwart me.“ Peter is the loved one, torn between his own needs and those of his family: “For [daughter] Katya, either I am here or I am not. For me the line is elusive....