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Archive for the ‘caregiving, caregivers’ Category

My last post – a death in the family – has had an amazing ride over the past five days! After I posted it on Facebook, I tried to “boost” it to reach more people and for some bizarre reason, FB deemed it to be unsuitable, objectionable content – they refused the ad and removed the message from Facebook! Magically, it reappeared a day later (perhaps because I appealed, though I doubt it!) And since then, an amazing number of people have read the post about my aunt’s last days. I am enormously gratified by the response and so glad my story reached so many people. Thanks to all of you!

It’s been a busy week, because this is National Hospice Palliative Care week. I participated on a webinar for the Canadian Hospice Palliative Care Association on living well, right to the end. Here’s the link to the show (I’m the first speaker, right after the introduction). I hope you enjoy it!

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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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While the Hollywood image of dying often features a loving family gathering around the deathbed, life often presents a very different reality. In a chapter in my book – entitled “One Big Happy Family” – I talk about some of the challenges families may face at this difficult time. I often say that each of us, when the faced of a parent, becomes an exaggerated version of ourselves with both our best and worst characteristics showing up in spades. As well, conflicts that might have occurred decades before may resurface as siblings vie for attention and recognition.

End of Life University

What do you do when a family (your own or a patient’s) is crumbling due to unhealed resentments and irreconcilable differences? Find out now.

conflictpodcast

In today’s episode I’ll share my best tips for helping families move through conflict toward resolution during stressful times like the death of a loved one. I’ve had lots of experience with this work during my years as a hospice doctor so be prepared for a longer-than-usual episode!

Announcements:

slide01My new course Step-by-Step Roadmap for End-of-Life Planning is almost ready for release (just a few days away as I record this!) The course is simple yet comprehensive and will help you examine your mindset, values, beliefs, and fears about death before you make decisions about your end-of-life healthcare. Go to eoluniversity.com/roadmap to learn more and sign up to be notified as soon as the course is released.

Sponsorship:

supportonpatreon-e1412764908776This podcast is sponsored through the EOLU donation page…

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pastoral-care-workshop-katherine-arnup

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Yesterday, I had the opportunity to be part of the first annual Provincetown Book Festival. There were wonderful readings by poets, novelists, memoirists, and others, great discussions, and a book fair, where authors displayed and sold their books. Along with 14 other authors, I spent the beautiful sunny day sharing my work and selling and signing my book.

I was a little concerned that people in a vacation spot like Provincetown might not be interested in buying a book about caregiving, death and dying. What surprised me was how many people shared their own stories with me – deeply personal intimate stories of illness, caring for parents, and coming to terms with death.

Many of the people who approached my table shook their heads when I told them what the book was about – not because they weren’t interested, but because their parents were dead. “I cared for my parents into their nineties,” one woman said. “And we cared for my partner’s parents too. It was a long stretch.”

Not surprisingly, given the fact that daughters by far and away do the work of caregiving in comparison to sons, most of the people who stayed to talk with me were women. Now in their 60s, they were beginning to think about their own aging process, and who might care for them. “I better give that book to my kids,” one woman laughed. “It’ll be their turn soon.”

For those women who don’t have offspring to whom they can turn, the options may be more limited. Nieces (and nephews) may be willing to take up the task of caring for their aging aunts (and uncles) – but it’s likely they’ll have their own parents to worry about already.

As Baby Boomers, many of us are fiercely independent, and dread the thought of becoming a burden on our children or family members. I urge readers of my book to begin talking about these issues now, before it’s too late, and we find ourselves in a state of emergency. What heartened me about yesterday was how many people were more than willing to have these discussions – with one another, with other people who approached my table (and my fellow writers, and with me.

A couple of women who came by the table said that the topic of my book was just too close to home. Two women had recently been diagnosed with cancer, and were undergoing treatment. A stark reminder of how present cancer and other illnesses are in all our lives.

This willingness to talk openly about life and death is one of the reasons why I love being in Provincetown. Yes, lots of people are here to spend their days at the beach, before relaxing at the tea dances, restaurants, and bars, but many others still carry the memories and images of how AIDS devastated this town in the 80s and 90s. Provincetown has a higher proportion of people with HIV/AIDS than the rest of the country, and year round Provincetown residents work with and support the services that sustain people with HIV/AIDS. They are more than willing to share their stories with me over a glass of wine at the bar where I love to write.

Sometimes I worry that too many people have their heads buried in the sand when it comes to illness, death and dying (as in, if I don’t talk about it, it won’t get me!) Being able to have talks such as the ones I’ve had here in Provincetown give me hope that some people are embracing the opportunities to talk.

PS: The book fair got terrific coverage in the Cape Cod Sunday Times!

Here’s the link to the story:

http://www.capecodtimes.com/news/20160918/authors-drawn-to-provincetown-book-festival#ReaderReaction

 

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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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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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