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THE CAREGIVERS' LIVING ROOM A Blog by Donna Thomson: HOW TO CARE FOR SOMEONE YOU KNOW IN HOSPICE

I am pleased to host this guest post by my colleague in caregiving and writing, Katherine Arnup.  Katherine is a hospice volunteer who has a lot of personal caregiving experience.  Here, she writes about caring for someone she knew in hospice… . . . → Read More: THE CAREGIVERS’ LIVING ROOM A Blog by Donna Thomson: HOW TO CARE FOR SOMEONE YOU KNOW IN HOSPICE

THE CAREGIVERS' LIVING ROOM A Blog by Donna Thomson: HOW TO CARE FOR SOMEONE YOU KNOW IN HOSPICE

I am pleased to host this guest post by my colleague in caregiving and writing, Katherine Arnup.  Katherine is a hospice volunteer who has a lot of personal caregiving experience.  Here, she writes about caring for someone she knew in hospice for the first time when she was volunteering. Anyone who wonders about how to approach being helpful but not intrusive with a friend or loved one in hospice care will appreciate Katherine’s wisdom on this delicate topic. 

When I was first training to be a hospice volunteer (in 2001), one of the most important lessons the leaders drummed into us was the centrality of boundaries. We were reminded repeatedly that we were not a family member, a close friend, or even a not-so-close friend of the residents. In short, we were not in the “inner circle.” That space was reserved for those who were closest to the person who was dying, be they family of origin, by marriage, or by choice. As death grew nearer, we were to maintain a distance, making room for those in the inner circle to spend time with the resident before they died.
I had no problem with this lesson, since I had struggled with boundary issues when my sister was dying and a woman we had hired to assist with her care started to feel that she was as close to Carol (or perhaps even closer!) than we were.
We were also repeatedly instructed about confidentiality and never speaking about what happens in hospice with other people. What wee weren’t really prepared for is how to be when we know one of the people who is admitted to the residence.
As someone who lives in the same neighbourhood as the hospice where I volunteer, it’s perhaps inevitable that people will be admitted with whom I am familiar, whether as neighbours, colleagues, or local activists. When that has happened, I’ve made a mental note in my mind, mostly by way of acknowledging the sorrow and loss they must be facing. I make a point of not indicating I’m familiar with them, out of respect for their privacy and the tremendously challenging circumstances they are facing. I hold them in my heart, and continue with my work both inside and outside of hospice.
A while ago, a woman was admitted with whom I had more than a passing acquaintance. We had been colleagues once upon a time, members of the same neighbourhood, and friends of friends. I was saddened to see that she had been admitted and wondered how I should be. Should I avoid her room as much as possible out of respect to her privacy? Or should I go and greet her and help make her feel welcome?
I chose the latter option, as I knew in my heart it was the right one. I knocked on her door, came to the side of her bed, and said something like, “I’m sorry to see you here – though I’m glad you can be here.” She asked how long I had been volunteering and I told her. And she told me what a wonderful place it was. We spoke for perhaps five minutes, then I left her to rest while her family went to lunch.
For the rest of my shift, family and friends visited her, and I steered clear except to respond to the call bell.
The following week, as so often happens when someone decides to come to hospice, she was much weaker, and a note in the book indicated that only wanted to see her family. Despite my desire to go in and say hello, to offer my “expertise” or “wisdom,” I knew that was much more for my own needs than hers and I resisted.
This is often the litmus test for me when I am facing such a decision at hospice. I ask myself this question: “Are you going to see the resident (or say this brilliant thing) because it will support or help them? Or are you doing it because of a need of your own? To feel helpful and needed. To be validated in some way. To feel connected.”
I really do ponder those questions before going to a room or saying or doing something, especially as a patient nears death. Most of the time, the answer is that I can be of service to the patient, whether by sitting at the bedside when they are alone or singing songs or reading the Bible (or poems or any book that’s evident in their room). And I can feel certain that I am not breaching any boundaries and getting myself “in trouble.”
It’s inevitable that we will meet people we know in the hospice work that we do. Indeed, in rural hospices and small communities, it is unavoidable. The important thing is not that we avoid people we know or pretend we don’t know them. Rather it is respecting the honour and privilege we have been given in being able to accompany people when they are dying. Sometimes that means doing the dishes or making up beds or getting more ice to make ice chips. And sometimes it means making space for family members (supporting them if we can) and respecting their time with the person they love.

Katherine Arnup is a writer, life coach, speaker, hospice volunteer, and retired Carleton University professor. She writes about matters of life and death on her blog at https://hospicevolunteering.wordpress.com/.  Her book about caring for her sister and her parents as they were dying – “I don’t have time for this!” A Compassionate Guide to Caring for Your Parents and Yourself – is available online at Amazon and Chapters and at independent bookstores in Ottawa. http://katherinearnup.com/

. . . → Read More: THE CAREGIVERS' LIVING ROOM A Blog by Donna Thomson: HOW TO CARE FOR SOMEONE YOU KNOW IN HOSPICE

THE CAREGIVERS' LIVING ROOM A Blog by Donna Thomson: HEALED, IF NOT CURED – WHAT A GOOD DEATH LOOKS LIKE

This morning I was scrolling through facebook when a friend’s post caught my eye. Eric Fischer is a disability Dad whose son is palliative and very complex. I always read Eric’s sensitive and searingly personal writing – you may remember that I reviewe… . . . → Read More: THE CAREGIVERS' LIVING ROOM A Blog by Donna Thomson: HEALED, IF NOT CURED – WHAT A GOOD DEATH LOOKS LIKE

THE CAREGIVERS' LIVING ROOM A Blog by Donna Thomson: HEALED, IF NOT CURED – WHAT A GOOD DEATH LOOKS LIKE

This morning I was scrolling through facebook when a friend’s post caught my eye. Eric Fischer is a disability Dad whose son is palliative and very complex. I always read Eric’s sensitive and searingly personal writing – you may remember that I reviewe… . . . → Read More: THE CAREGIVERS’ LIVING ROOM A Blog by Donna Thomson: HEALED, IF NOT CURED – WHAT A GOOD DEATH LOOKS LIKE

THE CAREGIVERS' LIVING ROOM A Blog by Donna Thomson: Balancing Love, Vulnerability and the Right to a Doctor Assisted Death

In the United States, news is dominated by the pre-election primaries.  But in Canada, headlines are about how my country should operationalise a Supreme Court ruling on physician-assisted suicide.  The Supreme Court’s ‘Carter Decision’ found… . . . → Read More: THE CAREGIVERS’ LIVING ROOM A Blog by Donna Thomson: Balancing Love, Vulnerability and the Right to a Doctor Assisted Death

THE CAREGIVERS' LIVING ROOM A Blog by Donna Thomson: The Red Book That Is So Wonderful

There’s a red book that’s been sitting on my desk for months.  It’s one of many that have been sent to me for book reviews.  That pile got smaller recently when I came to the cottage for a summer break of reading and relaxing.  I wish I had read this book sooner, because it has . . . → Read More: THE CAREGIVERS’ LIVING ROOM A Blog by Donna Thomson: The Red Book That Is So Wonderful

OPSEU Diablogue: Pro-rating funding for PSW wages creates unintended consequences

In 2010 a provincial coalition of experts was assembled to look an integrated hospice palliative care system in Ontario. Hospices are a specialized residential facility for palliative care patients. As the coalition’s report states, “hospice palliative care is a philosophy … Continue reading →

Musings on Canadian Politics: Quebec at forefront of right-to-die movement

The Quebec National Assembly introduced a bill on Wednesday that will allow health professionals to use medical procedures to end the lives of patients near death who are suffering and want to end their lives.

The legislation “is intended for people at the end of their life to die with autonomy and dignity,” said Veronique . . . → Read More: Musings on Canadian Politics: Quebec at forefront of right-to-die movement

calgaryliberal.com: Why I Run

When Redford’s Conservatives cut persons with developmental disabilities programs, I can only look on aghast as funding for my three handicapped siblings is cut. When Redford guts palliative care nurses I can only remember caring for my grandmother, an ex-nurse who spent more than 40 years in the profession, who died last year vowing never . . . → Read More: calgaryliberal.com: Why I Run

THE CAREGIVERS' LIVING ROOM - A Blog by Donna Thomson: Five Tips for Surviving Caregiving

A few weeks ago, I travelled to Vancouver to address a family association and also to give a talk about how we use Tyze Personal Networks to coordinate Nick’s care.  I’ve written extensively on Tyze before, but for the uninitiated, Tyze is a softw… . . . → Read More: THE CAREGIVERS’ LIVING ROOM – A Blog by Donna Thomson: Five Tips for Surviving Caregiving

THE CAREGIVERS' LIVING ROOM - A Blog by Donna Thomson: The Right to Give Care to Someone You Love

Recently, I spoke on the telephone with another writer who six months ago, lost her beloved mother to cancer.   Christabel Shaler writes a blog called The Ethical Hustler for the Vancouver Observer and here is how she described her mother in one of her posts there:

We grew up in a basement suite . . . → Read More: THE CAREGIVERS’ LIVING ROOM – A Blog by Donna Thomson: The Right to Give Care to Someone You Love

THE CAREGIVERS' LIVING ROOM - A Blog by Donna Thomson: Constipation, a Kidnapped Diplomat and an Enema

My husband is a retired diplomat.  A colleague from the service, Bob Fowler, had the terrible misfortune of being kidnapped in Mali and wrote a book about his awful experience called “A Season in Hell”.  Bob tells a story in his book (and one recounted in even more vivid detail at our dinner table one . . . → Read More: THE CAREGIVERS’ LIVING ROOM – A Blog by Donna Thomson: Constipation, a Kidnapped Diplomat and an Enema

THE CAREGIVERS' LIVING ROOM - A Blog by Donna Thomson: "God’s Little Joke" – A Tragic Story

I guess I am used to witnessing pain, so I do not cry easily.  But this morning I read an article from “Psychology Today” that made me weep silently, my stomach in knots.  Titled “The Cyclops Child” and written by a retired MD, it tells the story of this doctor as a young man (fifty . . . → Read More: THE CAREGIVERS’ LIVING ROOM – A Blog by Donna Thomson: "God’s Little Joke" – A Tragic Story