Fraying at the Edges. A Life-changing diagnosis. #Alzheimer's @nytimes

“The Taylors hated the stealth that encased the disease, how it was treated like an unmentionable cousin. They wanted no part of that. Ms. Taylor decided that she would not show herself as some spackled-over person. “It was my decision to let the disease be alive in my life,” she said. “You don’t have to just throw in the towel.”

She didn’t know the order of whom she would tell, nor how to phrase something so shackled with frightful connotations. Your life becomes a script. Alzheimer’s, she knew, leaves its heavy imprint on everyone… 

Just recently, Ms. Taylor had discovered the website To Whom I May Concern, the creation of Maureen Matthews, a psychiatric nurse. It arranges for people in the early stage of dementia to act out plays telling what it is like for them. Ms. Taylor clicked on some videos, at once felt the common spirit. The person saying, ‘People take that diagnosis and assume that you are now officially irrelevant.’ And: ‘It’s not that we want people to treat us as if we have Alzheimer’s. But at the same time we want people to recognize that we have it. Confusing, right? Welcome to our world.’ And: ‘The end stage is our future. But not today’.”

On #Widower Watch. #hpm @otherspoon

"Marking family and personal occasions in this way has become increasingly important to all of us; these events intersect long, quiet weeks with laughter and company. And here’s the often unacknowledged benefit to keeping watch on a widower: With my grandparents dead and my friends all around my age, he diversifies my social life as much as I do his. He gives me a perspective on the city we live in that my peers simply don’t have. We spend our time together talking about our dissimilar lives and the things that matter to us, reminiscing about his many rich years, and looking up old poems in the vast library that lines the walls of his house. He is my friend and I miss him when I am away. As it turns out, nonagenarians are good company".

Embracing Life While In Palliative Care

Patients staff and students talk about their experience of palliative care in this film that takes away some of the stigma attached to death and dying enabling important conversations to happen at the end of life. The observations contained demonstrate the quality of life that can be attained at the end of a person's life.

"When you come to the end of your life, how do you mark it's last moments?

This short documentary,Embracing Life, aims to take away the stigma attached to death and dying.

Talking to patients in palliative care, the creators of the film enable conversations about how people feel about approaching the end of their life.

'The aim of the project has been to help build the capacity of communities to talk about death and dying, loss and grief, so that those living with a terminal disease can be better supported,' Sam Kelly from Calvary Health Care Bethlehem told The Huffington Post Australia.

The patients interviewed in this film give an incredibly positive perspective on what it's like to face death.

'Once I accepted that death was to come, I've just held everyday and I try to live it to the fullest,' said Tony Steele.

When Cancer Treatment Offers Hope More Than Cure

"I turned back to my patient, still holding her hand. 'How about we take a little break from the treatment?'

She nodded, and we sat in silence again. After a while, she asked 'When we gonna get started on chemo again?'

I looked uncertainly at her and then at Mr. Boo. He looked back at me, awaiting my reply. This time, I rearranged myself to sit up a little straighter in my chair.

'Well, I have to wonder if giving you more chemotherapy is the right thing to do, with all that you’ve been through. I’m wondering if we should be talking about bringing more care into your home, to assist both you and Mr. Boo. Maybe even hospice.'

I had said the word."

Repeat After Me: 'Hospice Means More Care, Not Less.'

"If you or anyone you know has advanced illness that isn't meaningfully getting better (or keeps getting worse) in spite of many treatments and hospital stays and doctors' visits then you owe it to yourself to learn more about hospice sooner rather than later. This is especially true for more frail elders with serious illness because the hazards of additional hospitalizations and certain treatment side effects are more serious and more common. Ideally, hospice care is set up on a better day, in advance of a true crisis so that the hospice team and person receiving services can get to know one another and set up truly personalized care. Too many people elect hospice so late in their course of illness that they miss out on many of the benefits".

In #Palliative #Care, #Comfort is the Top Priority. #HPM

"Although 40 percent of their palliative care patients can expect to be cured, 'there clearly still are both patients and oncologists who have an inappropriate association in their minds,' he said. 'They still associate palliative care with giving up.'

To the contrary, palliative care can help patients live fully, regardless of their prognoses."

#Dying is About #Living. ~ Metastatic Me

"One lives with a terminal illness by taking each day as it comes.  In the beginning, I would tell myself that I wasn't going to die that day, and that I wasn't going to die the next day or even the next week.  After time, the days started to accrue.  Slowly but surely, plans were made; goals were set.

And so I learned that dying is really about living.  

It's about taking each day for what it is, piecing together something good in it, and moving on to the next day.  It's about planning for the future, while simulatenously planning for a future without you.  It's about understanding the limitations that being sick puts on you, accepting those constraints, and doing things anyway.  It's about simplifying your day to day life to enjoy more time to do the things that bring you joy".

Facing life’s end with grace. #EOLC #HPM

"In the end, the more people are ready to have the talk, the more likely it is that the medical industry will offer care that accounts for the vast, nuanced, and fluid decision points facing patients who are short on time.

Dying, after all, is complicated, hard business, and dying well is more complicated, and harder".

It's time to talk about #end-of-life and palliative care. #HPM

"People working in Palliative care in Canada say the conversations are starting but there is still a dire need for better end of life care".

Misconceptions of palliative care may make people reluctant to avail themselves of help earlier. #HPM

"Lead researcher Dr. Camilla Zimmermann, head of the palliative care program at Princess Margaret Hospital, says there is a misconception about what palliative care is.

Many people believe it is the type of care hospitals offer when they have exhausted all medical options. They think it means that the oncology teams, having run out of cancer fighting tools, then hand off patients to people specialized in helping ease the final days of a dying person's life.

As a result, Zimmermann says, some people are reluctant to avail themselves of the help palliative care teams offer earlier in their cancer journey.

She says palliative care teams — some of which have started to call the service they offer supportive care — collaborate with oncology teams to try to help patients through difficult treatments and the progression of their illness. For the palliative care team, that can mean providing access to home care and to assessments of the needs of the patient and his or her family, among other things.

The aims of both teams are the same, Zimmermann says — prolonging life and improving quality of life".

Inconsistent and inadequate patchwork of palliative care across #Canada needs to be priority. #HPM

"Federal and provincial governments need to guarantee access to palliative care in legislation, the Canadian Cancer Society said Tuesday as it released a report on the state of care across the country.

In its findings, the society said critically ill patients are falling through the cracks of the health care system and improvements are needed to address the patchwork of service that exists.

In the absence of national standards, individual jurisdictions are left to develop their own policies, programs and guidelines that result in inconsistent and inadequate palliative care, the report said".