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Posts Tagged ‘hospice’

Last weekend I had the privilege of accompanying my aunt on the final days of her life. Long burdened with Alzheimer’s disease,  Aunt Ruth turned 94 on Friday, accompanied by a staff member who had stayed late Thursday night so she could be the first to wish her a happy birthday. On Saturday night at 11 p.m. she took her last breath, with another staff member by her side.

One of the longest residents of Fenelon Court, the long term care residence where she spent the final years of her life, Ruth was loved by the staff, who called her Ruthie, her childhood name I had only heard in family stories. She was the youngest of my father’s five siblings and the last to leave. She was spunky, spirited, outspoken, generous, and loving.

When we arrived from Ottawa on Friday, she was somnolent, no longer responding to visitors or staff. I had brought my ukulele with me on the trip, and knowing that hearing is the last sense to leave, I set myself up by her bedside and began to play. Whether she could hear me I’ll never know, but I like to think that the music of Leonard Cohen (Hallelujah) and the gentle words of The Water is Wide provided her with comfort on her journey.

As I played, staff came in and out of the room to check on Ruth, and to offer drinks or food to me. Each time they entered, I was struck by their gentle caring and familiarity with “Ruthie.”

“She’ll do it in her own time,” one nurse commented. “You always have, haven’t you Ruthie.”

On Saturday we spent much of the day with Ruth, giving my eldest sister a much-needed respite from the long days she had been spending by her side. Once again, I sang, shared birthday cards and stories with Ruth, reminders of the love that surrounded her. When we finally went back to our hotel at 9, one of the nurses reassured us that she would sit with Ruth. She remained at her side until she died.

The next morning we returned with my sister Judy to begin cleaning our Ruth’s room. Ruth’s body was still there, and I was glad for my years of hospice volunteering that helped it seemed perfectly natural. As I remarked on the volume of clothes in her closet, I couldn’t help but notice their beautiful condition – another tribute to the careful attention of the staff.

As we prepared to walk out with the people from the funeral home, a staff member lay a quilt over her body, and as we walked slowly to the front door, staff members throughout the building lined the halls, a gesture of respect I recognized from my own hospice.

Though I am writing this post to honour Aunt Ruth, I am also honouring the amazing staff at Fenelon Court. When I knew she was in a long term care facility, I had an image of hallways filled with patients sleeping slumped over in wheelchairs, a certain smell permeating the building. I had witnessed these scenes in other long term care facilities, and I was dreading seeing my aunt in such a place.

Fenelon Court could not have been farther from those expectations! The building is bright and clean, the patients engaged in activities where possible, and attended to with care in every encounter I witness. “We are their family,” one nurse told me. “Often they have a son or daughter who rarely visits. We are here every day and we love them. They’re our family too.”

Perhaps it’s because the facility has only 67 residents – and it is designed in pods so each area is relatively small and contained. Perhaps it’s because it is located opposite an elementary school and children often visit the centre, sharing drawings, Easter activities, and joy with the residents. Perhaps it’s because it’s located in a small town, a place where community really matters. But I think there’s something more – something I can’t quite put into words – beyond respect, dignity, caring, and love. That’s what I experienced with my aunt last weekend. And for that I am enormously grateful.

Fenelon Court

fenelon_overview

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Today is March 8th, International Women’s Day. So it seems appropriate to share this article about Dame Cicely Saunders, the founder of St. Christopher’s House in London and a pioneer in the modern hospice movement. Many people involved in hospice palliative care work in Canada and elsewhere were inspired by her work and her life. Dr. Balfour Mount (the Montreal physician who established the first palliative care unit and coined the term palliative care) and Dr. John Seely (a champion of palliative care in Ottawa and friend and colleague of Dr. Mount) both visited Cicely Saunders in London and saw first hand the importance of her work.

So today, I am grateful for Dame Cicely Saunders and the many many women who came before us, who paged the way for our work today, and shone a light on the possibilities of the future.

http://endoflifestudies.academicblogs.co.uk/celebrating-the-life-of-cicely-saunders-on-international-womens-day-by-david-clark/

 

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This letter, by writer Peter DeMarco, to the people who cared for his wife in her final days, reminds me of the quality of care we provide for dying people and their families in hospice.

http://www.nytimes.com/2016/10/06/well/live/a-letter-to-the-doctors-and-nurses-who-cared-for-my-wife.html?_r=0

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An article I wrote was just published on a wonderful site called KevinMD. Here’s the link:

http://www.kevinmd.com/blog/2016/09/helping-hospice-present-much-important-busy.html

As always, I’d love to hear your thoughts.

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https://www.thestar.com/opinion/commentary/2016/08/30/first-step-to-improving-palliative-care-change-its-name.html

A recent article in the Toronto Star suggests that we should change the name of palliative care – perhaps to supportive care – in order to encourage people to seek out care early on in their illness. I’ve seen similar articles in the US as well, arguing that palliative care and hospice care scare people off – presumably because of their association with death.

As an historian and long-time hospice volunteer, I think we should celebrate the contribution that Canadians have made to end of life care. That includes celebrating Dr. Balfour Mount, the pioneering Montreal physician who coined the term palliative care back in the 1975. I’m proud of what we’ve accomplished in Canada and I’m happy to tell people about it.

What do you think?

 

 

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When my father was dying, I often found myself saying, “I wish someone would tell me how this ends.” It wouldn’t take more than a minute before I’d catch myself. I knew very well how it would end. I knew it would only end when my father died. Whether peacefully (as it mercifully turned out) or with enormous suffering (as I rarely see at hospice), it ends in death.

And the fact was, I wasn’t ready for him to die yet. He was still of sound mind – at 94 – though his body had begun to fail. He was no longer able to go to a restaurant to eat dinner – one of our favourite activities. Eventually he stopped having “cocktail hour” with me – the only one of his four daughters who enjoyed this ritual with him. Still, we could sit and watch television together – Who wants to be a millionaire? Golf and curling – things I relished with him and would not be caught watching otherwise. I clung to those shared rituals like a drowning woman. Indeed, most days I felt like I was drowning.

Anything was better than losing my father – this man of wisdom, of knowledge, of family history.

Like the families I meet each week at hospice, I knew all too well where this was leading – but the routines of caregiving, be they cooking or grocery shopping or making phone calls, can distract us however briefly from the ultimate point of this journey. The person we love is dying. The person we love will no longer be in our lives. The person we love will leave us – forever.

Somehow we have to balance that knowledge along with carrying on the activities of caregiving. In fact, those activities are essential to providing care and maintaining our own sanity.

Soon enough we will experience what one family recently termed a “wake-up call.” When I asked him what he meant, he spoke eloquently about the impact that another patient’s death had had on him. “This is why we’re here,” he said. Not that he had really forgotten. Not that any of us is likely to forget for long.

And so we do our best, showing up as our best selves. This is what I hope I did for my father. And it is what I see families doing, week after week, at the hospice where I volunteer.

 

 

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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.

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