living your best to the end

consent _conflict Decision-makers: conflict and consent.

Substitute, proxy, surrogate, agent. They all mean the same thing: the person or people you’ve assigned the authority to make decisions on your behalf, if you become too ill or too injured to speak for yourself.

This may be one of the most important parts of your end of life ‘directives’: it’s often a heavy and serious responsibility to assign. Many’s the substitute who’s suffered from Post Traumatic Stress.

Conflict

Conflict can come from all sides: your surrogate decision-maker(s) may not be ready to let you go – perhaps feeling you’re giving up.  Studies show that surrogates direct according to their own wishes, rather than the patient’s directives. Healthcare professionals, too, often feel like they’ve failed if the decision is made not to try another intervention or procedure.

A health crises can throw decisions into array:

  • Many would like to die at home, in familiar surroundings. But health scares at home can be too much to handle for family or caregivers or even the patient.

Consent

Even the seemingly simple act of  giving ‘consent’ and ‘informed consent’ isn’t so simple in practical terms. It can help to understand these complexities, to better ensure wishes can be honoured.

 

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’

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.

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...

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None of us, in our culture of comfort, know how to prepare ourselves for dying, but that’s what we should do every day.

Joni Eareckson Tada