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Posts Tagged ‘caregiving’

Last week, Canadians were shocked and saddened by the tragic circumstances surrounding the death of an Ottawa woman. An op-ed piece written by her husband in the Ottawa Citizen was followed by a radio interview on CBC’s Ottawa Morning. Here are the links to the article and radio story:

http://ottawacitizen.com/opinion/columnists/adams-what-my-dying-wife-and-i-never-knew-about-palliative-care

http://www.cbc.ca/news/canada/ottawa/programs/ottawamorning/palliative-care-1.4194365

The story provides graphic evidence of the shortcomings of palliative care in this country. As the Canadian Hospice Palliative Care Association has documented, only 17 to 35% of Canadians have access to hospice palliative care. Many factors result in that variation but even at the high point of 35%, the vast majority of Canadians are not receiving the care they need.

Those of us who have experienced palliative care can attest to the dramatic difference it can make in the lives of terminally ill patients and their families. As many experts have argued, palliative care should be available to patients from the onset of a life-threatening illness to help them deal with pain and other symptoms associated with their illness and to provide them with the knowledge needed to make informed choices.

When my sister was dying 20 years ago, there were (to my knowledge) no pain and symptom management teams or facilities we could access to help us with her care. It was our incredible good fortune to find an amazing palliative care nurse (through a visiting nursing service) who guided us through the final days. Her name was Isabelle (“Is a bell necessary on a bicycle?” she used to joke when I had trouble remembering her name) and she followed us from home to hospital when my sister had to be transferred. She patiently explained the significance of Cheyne-Stokes breathing (the “death rattle”) to a very frightened sister (me), offered non-judgmental advice on the choices we faced (e.g. whether oxygen might help), and reminded me that we were doing a great job.

Today, nurses like Isabelle are working in hospitals and residential hospices, and visiting patients in their homes (including long-term care facilities and retirement residences). They ease the journey towards death for both patients and their families. I wish everyone could have an Isabelle (or a Linda, Valerie, Marie, Esther … ) by their side at this difficult time in their lives.

In my view, there is nothing wrong with palliative care that greater commitment, education, financing, and access wouldn’t fix. We need greater emphasis on palliative care in medical schools and nursing programs. We need the federal government to truly commit to and fund an end of life strategy, and we need our provincial governments to ensure access to high quality hospice palliative care for all Canadians, regardless of where they live.

Until then, I fear that more people will experience the needless suffering that the article above describes. Let’s all work together to make sure that doesn’t happen.

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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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Yesterday was my father’s birthday – the 24th of May. When we were young, he taught us the poem that he grew up with: “The 24th of May is the Queen’s Birthday. If we don’t get a holiday, we’ll all run away!” I think of that little ditty whenever his birthday rolls around.

In honour of my Dad, I wanted to repost a piece from my book. It’s a story that I read whenever I am giving a talk – my way of reminding people to find the joy in the midst of caregiving, and to savour those moments, however fleeting they may be. It’s also my way of bringing my father with me wherever I go.

Finding the Joy

Bette Davis first popularized the observation that “getting old is not for sissies.” I would add that caring for your elderly parents is not for sissies either.

It is painful to watch our parents’ health and independence diminish with each new day. It is a struggle to maintain a calm, patient outlook when our lives feel overburdened and crazy.

Yet it is essential that we not let their situation overwhelm us. Though there will be times when we feel like we can’t go on, there are also moments of pure joy and delight, moments of tremendous meaning and poignancy that remind us why we are doing all this in the first place.

As I was writing about my father as he was dying, I was surprised by how many such moments existed. As I slowed down to his pace, as I opened myself up to what was actually happening, I was able to let go of my frustration and just be with him. (Hint: I often kept a pad of paper and pen on the couch beside me when I visited my father. The first page contained my to-do list. But I would often flip to the following page, and scribble down phrases and words and stories that my father would say. Since he spoke very slowly – all his life but even more so when he was in his nineties – I could actually record many conversations almost verbatim.

On the days when I rushed to my father’s apartment, dreading his “I thought you had decided not to come” greeting, I might miss the humor implicit in his instructing me where to find the money for my trip to the mall. Or the irony in his instructions regarding our choice of take-out meals. Or the combination of pathos and love in our efforts to pay his bills together.

These are the moments that become the memories which sustain us through the grieving process after our parents are gone. These memories will survive far longer than the sting of a sharp word. But we can only see them if we are in the present, not fretting about or dwelling on the past, or obsessing on the imagined future.

Sometimes these moments happen when we least expect them.

Each time I visited my father, we began the same way.

“Is there anything you need me to do, Dad?” I would ask. Usually my help involved a shopping trip to the mall. On this particular day, the request was very different.

“I don’t think so,” he said. And then, a long minute later: “I do have a request of you that I’ve been too embarrassed to make.”

“Oh,” I said, a little taken aback. “What is it?”

“I would like you to cut my toe nails. I can’t bend over to reach them anymore, and they’re getting uncomfortably long.”

“Where do you want me to do that?” I asked, trying to hide my unease.

“In the bathroom,” he said. “In the middle of the night, when I wasn’t sleeping, I amused myself with deciding that I would soak my feet while sitting on the bath seat.”

He preceded me to the bathroom to prepare himself. When he called my name, I joined him. I don’t think I had never been in the bathroom at the same time as my father.

When I walked in, he was sitting on the edge of the bathtub, his feet resting on a large brown towel. His grey cotton pant legs were rolled up above his knees to reveal dozens of purple and blue bruises on intensely veined thin white legs.

“Do you need anything else, Dad?”

“Bring me a bowl of water. You can use the dishpan under the sink. It’s not getting much use these days.”

I returned with the square brown plastic dish pan, which I proceeded to fill with warm soapy water. I set it down on the bathmat in front of him.

“Here you go, Dad,” I said. “Just like Madge.” The Palmolive woman from TV. “You’re soaking in it,” Madge would tell the customers in her upscale salon who always responded in horror to learn they were soaking their hands in dish detergent.

“How would you like me to do this, Dad?” I asked when he had finished soaking his feet.

“However you like,” he directed. “The nail clippers are there on the sink.”

I picked up the set of nail clippers and inspected his foot.

“Where do you want me to start, Dad?”

“Your choice.”

Some choice, I thought. The big toes were enormous and terrifying. The nails must have been an inch thick and hard and yellowed despite his efforts at soaking. I wondered how long it had been since he’d had his nails cut. I didn’t ask. I chose the baby toe. I began by facing him but soon discovered that the angle was too awkward. I moved my body between his legs, resting one arm on his leg. It felt strangely intimate. I proceeded, toe by toe, cutting and shaping, trying my best not to cut him. Left foot, then right. One toe at a time.

“Well, Dad,” I said, moving towards the door to inspect my handiwork. “I think we’re done. How do you like them?”

“Perfect,” he said. Then, not missing a beat, he added, “Do you paint toenails as well?”

All these years later, I still smile as I remember my father’s wry humour, relieving any discomfort I might have felt. It was his own particular, understated humour that I miss and cherish all at once.

 

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Somehow the month of April seems to be have raced by. For me, it was filled with speaking engagements (Colonel By Residence in Ottawa; Hot Talks on Health in Toronto) and planning for upcoming talks at the Good Companions Centre this week and in Lindsay and Fenelon Falls next week. It’s been exciting and energizing and a little exhausting (I am an introvert, after all!) and I’ve missing having the time and space to write and blog since my return from Virginia. I’ve made some great connections and met some amazing caregivers and volunteers and heard about the wonderful work being done by Carers UK. And now, here it is, May 2nd, and the start of Hospice Palliative Care week.

Yesterday was the Annual Hike for Hospice – I’ve attended all but one since I started volunteering at hospice in 2001. It’s always a great time to meet fellow volunteers, family members we’ve helped at hospice, and supporters of hospice palliative care. Hopefully – despite the dark skies and rain – we were able to raise much needed funds to continue our work at Hospice Care Ottawa.

I love talking about the work we do at the hospice (can you tell?) and I seem to find a way to insert hospice care into every talk I give, even if it’s not explicitly about hospice care! In these days when so much media attention is focused on physician assisted dying, I feel it’s vitally important to dispel some of the myths about palliative care and to tell people what hospice palliative care is all about.

Most people have never stepped inside a hospice. No doubt they have many fears and misconceptions about hospice care.

Some people think that hospice care hastens death.In fact, hospice care enables people to live their final days or weeks without pain (in most cases) and with dignity. Research suggests that hospice care can enable people to live longer once their pain and symptoms are successfully managed.

Many imagine that a hospice is a dreary place devoid of laughter or celebration. I can’t tell you how many times people have asked the question: “Don’t you find it depressing volunteering in hospice?” I tell them that yes, there is sadness at the end of life, but there is also joy and celebration. I have seen high school graduations, wedding and birthday and anniversary celebrations – even a visit from a brand new great grandchild – in my years at hospice.

Hospice palliative care enables people to live fully until the end of their lives. For those of us who are privileged to work in hospice care, we find inspiration and meaning and a reminder of the things that really matter in life – human connection, love, caring, dignity.

I am honoured to be a hospice volunteer. I know that many readers of this blog share that honour with me. Let’s take this week to tell others about the gifts of hospice care. Share this blog with them. Share your story with them. Encourage them to get involved, whether it’s helping to raise money, or volunteering as a driver for day hospice, or telling their elected officials of the need to provide sustainable funding for end of live care.

Let’s spread the word about hospice palliative care – this week – and throughout the year!

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I first wrote this post at the Virginia Center for the Creative Arts. It’s a year later now, and I am back in Virginia, writing about caregiving, end of life issues, and – yes – dignity.

Much has changed in the past year. We elected a new government – one that is committed to working with the provinces, to reforming health care, to providing more palliative care and support for caregivers in the home.

At the provincial level (I live in Ontario), we’ve seen a commitment to build up to 20 new residential hospices, to provide additional funds for existing hospices, and to increase support for caregivers. These are important initiatives and I look forward to seeing them implemented.

At the same time, however, there has been very little discussion about what hospice palliative care is – what it looks like, what it means for families and for patients who are reaching the end of their lives. There has been little discussion about what we want and need at the end of our own lives.

I hope that readers of this blog will take up the call to talk with your friends and family, your neighbours and workmates, about the kind of care we need and deserve. I hope you will talk about dignity and what it means to provide loving, respectful, dignified care for the people you love. These issues go to the very heart of what it means to be human. Please join me in this vital conversation.

Hospice Volunteering

I’ve been thinking (and writing) a lot about dignity in the past couple of weeks – what it means and how the notion of dignity has been largely appropriated by the “right to die” movement. Organizations with names like “Dying with Dignity” and “Compassion and Choices” seem to suggest that the only dignified way to die is with the assistance of a physician (whether through lethal injection or the provision of a lethal dose of medication).

Yet, dignity and compassion have been core values of the hospice movement since Cicely Saunders opened the first modern hospice in 1967 and remain central to our work in hospice palliative care today. Compassion lies at the heart of how we deal with patients and their families. And the preservation of a patient’s dignity, integrity, and respect are central to how we care for each person who enters the hospice program, whether in their…

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