Category Archives: Life in a Hospice

VOLUNTEERING IN A HOSPICE

A friend asked me recently whether she should take on the role of volunteer in a cause she believed in and for an organisation she trusted. My immediate reaction, based on my own experience, was “Yes, go for it.”

Being a volunteer is likely to present a whole new series of challenges from anything you have seen before. You will be faced with new problems and will search inside yourself for new ways of coping.

As we age, we need such challenges to feel young and vital. It keeps us on our toes. I believe that research I’d read somewhere suggested that new experiences of this kind are good for our long-term health.

Volunteering After 60

There are many types of volunteer work. Some will involve the use of skills, such as teaching children to read, or driving old or disabled people to medical appointments and the like.

Other tasks will involve helping organisations with their paperwork. Or sorting clothing or other donations to charity shops.

To me, it is most satisfying to work directly with people – visiting lonely old people in their homes or helping out in care homes. In my case, I worked in a hospice and gained enormously from it.

The benefits from such work are surprising – both in the sense that they are likely to be more than you thought and in the sense that they are unexpected.

Thrown into the Deep End

If anyone had told me beforehand that I would want to make tea for dying people, I would have doubted their rationality. Yet that is exactly what happened to me. Doing it and wanting to do it.

The first time I ever walked into a hospice, I did so with some trepidation, concerned about what horrible things I would likely see. Yet all I saw was an incredible peace and tranquillity that very much drew me in. I can still remember it vividly. I wanted to be part of the place.

And so I applied to a local hospice and was taken on. The ‘volunteers manager’ interviewed me briefly and said OK. No background check. No training. Just thrown in at the deep end.

That was 20 years ago. These days, there is doubtless a great deal of bureaucracy required to obtain such a role.

My Involvement with the Hospice

I spent roughly four hours in the hospice every Saturday afternoon, week after week, unless I was away.

The institution was very small – 16 beds – but almost always full. People were admitted much earlier than they would be now. All were dying, but some of them lived for some months in the hospice prior to leaving this world.

Somehow, it felt important just to be there, just to help at this very intimate moment in people’s lives. If anything I could do would lessen the burden of patients or their families, I was very pleased.

My job was to talk to patients, especially those with no visitors, make them tea, and discuss the menu for the next day. When I started, it felt very daunting just to do these small things.

After a few weeks, however, I got used to it and became adept at making what seemed like appropriate small conversation. Visits generally went smoothly.

Difficult Moments

But now and again, I would be faced with something that gave me pause, but also taught me the skills I could muster when necessary. Here are a couple of examples.

The hospice had a chef who went to some trouble to make the food appetising. One week, around the time of Mad Cow Disease, there was beef on the menu. People all over the country were often uneasy about eating beef, although it was said that it took 20 years for infected beef to have any effect.

But yes, one patient studied the menu and asked, “Do you think I dare to eat the beef?” I said I thought it would be ok, trying not to smile. I do not have a natural poker face and this was not easy for me.

A more difficult situation was that of a father who had travelled from the south of France to see his son, who was dying of AIDS. The man clearly had not known his son was gay nor that he was ill, so it was a lot for him to take in.

I felt very sorry for him, suddenly so far from home, dealing with this delicate situation, and no English. I mentioned to someone that I spoke some French. What I had not taken into account was this man’s thick Provencal accent – famously difficult for anyone to decipher.

He began to pour out his heart. I understood exactly what was going on, but it was a strain to get the particulars. I realised I was out on a limb ­– with little I could do.

I decided to answer when I could, but otherwise, to repeat, with as sympathetic air as I could muster, “C’est tres difficile” (“It’s very difficult”). I have never forgotten that man’s pain.

Special Moments

And there were also special moments. A young man dying from AIDS, who loved opera and had a CD player, asked if I would sit with him and listen to an aria from the Pearl Fishers. Sun was streaming in from the window. It was memorable.

There was also an older man with motor neurone disease, a former architect whose mind was clear as mine, but he had no physical movement. He communicated via a board with letters, directing me to them one by one.

One day, he asked for an ice cream, which I needed to feed to him very slowly. When it was gone, he had a big smile on his face. I said casually, “You liked that, would you like another?” and he signalled “yes.” Another half hour spent, another special moment gained.

Volunteer Work

Yes, volunteering can be so rewarding; you owe it to yourself to make possible such experiences. I would be very surprised if it was not found to be enormously satisfying. Sometimes, even a privilege to be there.

I worked at the hospice for four years. I had to stop because my husband and I had decided to travel a lot. I could no longer guarantee to be there every week. Even volunteers need to be dependable.

But I found the experience so interesting that I wrote a book based on interviews I conducted with hospice staff, Life in a Hospice. In the book, nurses, doctors, and many other people – even a very reflective chef – talk about the joys and challenges of such work and its impact on their lives.

It may not be for everyone, but you might find it moving.

This was initially published on sixtyandme.com (see https://sixtyandme.com/having-free-time-after-60-can-be-so-rewarding-as-a-volunteer)

The importance of hospice care

 

You work hard, carefully and totally out of the limelight. You produce a book that has some importance, as it is about the wonderful care that can be provided to people at the end of their lives. You think it will bring hope to ordinary people, worrying from time to time about how it will be for them or their family. Not to mention some support to those who do this work, as their labours and their difficulties are not often given much recognition.

The book gets the occasional review, but is not well marketed by the publishers, and falls into that vast collection of books that sell one or two copies a year. This is not good enough. So, you get the rights to the book back and re-launch it on Amazon. It begins to sell a lot more copies.

And then you get a review that understands what it is all about:

This is a gem of a book for anyone interested in palliative care and hospice work. There are many myths and preconceptions around what goes on inside the walls, many of them increase people’s anxiety and fear about contemplating death and dying.

Ann Richardson has taken a unique approach to this subject by sharing insights from a wide range of people who work in a palliative care setting. Their reflections are incredibly honest and insightful, as contributors share the joys and sorrows of their role. Anyone reading this collection of insights will gain a true picture of how those working in the setting bring a range of practical skills to the task in hand, but also bring themselves whole-heartedly, and often at personal cost.

There is a starkness in some of these reflections that represents the challenge of working with death every day, but if prospective patients were to read this, they would gain an assurance that those offering care are people of compassion and a deep sense of caring.

Hospices are unusual places in that they represent ‘thin places’ between life and death. People often have a view of what a building will be like that is at a great contrast from the reality. Ann’s presentation of such a variety of hospice life snap shots is a valuable resource for potential patients and their families, to give confidence in the support they will receive.

Staff and volunteers have reflected on their work with congruence and it is a tribute to Ann that they were prepared to speak about their emotions so freely. It is a unique collection of honest reflections and I commend Ann for bringing such a collection together to inform the public of the different roles with in the life of a hospice, but also to allow such a range of people a voice to share deeply held personal insights into these places which offer specialist palliative care.

Ann gives a picture of a hospice which could be representative of the many similar places that exist in this country, providing other hospices with a great resource to share with patients and staff alike.

by Karen Murphy, chaplain at Weston Hospicecare and President of Association of Hospice and Palliative Care Chaplains (AHPCC).Karen Murphy and Bob Whorton are the authors of Chaplaincy in Hospice and Palliative Care, Jessica Kingsley Publishers, 2017

Yes, hospice care is important – I hope many more people are able to get this message.

To buy Life in a Hospice, available in paperback or as an e-book, go to https://amzn.to/2FbSta9 or https://www.books2read.com/u/bpWk0z

Does NetGalley Work?

We all want reviews – lots of them and good ones. Some of us write in popular genres, have long email lists and no problem getting reviews in their many tens or more. The rest of us struggle – we ask our friends, our dentist and anyone we can think of until they look a bit bored.

That’s why I want to tell you about my experiences on NetGalley. I decided, as a micro-publisher, to place one of my books on it earlier this year as it has serious reviewers – librarians, journalists, academics and others who love to read – and, from my experience, they write thoughtful reviews.

I write books that don’t fit easily in any genre – based on confidential interviews, they enable people to talk about their lives in their own words and from the heart. The one I placed with NetGalley through BooksGoSocial, Life in a Hospice, is about nurses and others working in end-of-life care. And what happened? In one month, I received 12 reviews, of which 10 were 5 star.

But best of all, they were perceptive – not dashed off to meet a need, but aiming to communicate what the book is about and what it did for them. Here are just a few excerpts, to give you a ‘feel’:

“A brave book – not afraid to confront both the sadness and opportunity that comes from working with people at the end of their lives.”

“As the child of two elderly parents, this is a subject I think of almost daily: this book will make it a LOT EASIER to deal with.”

“As a hospice volunteer, I know well the beauty that can occur at the end of life…beautifully written and thoughtful…”

“It makes you realize that the troubles in your own life are not as important as those dealing with their own mortality…You take an inventory of your own life.”

“I was moved and overwhelmed by the care, compassion and honesty portrayed…This amazing book truly demonstrates the wondrous gift of a good death.”

BGS offers a placement with NetGalley at a bargain price. Why not have a go?

Find out more:
On Amazon |  At the Apple iBooksetc |  

This was originally published on the BooksGoSocial website (https://booksgosocial.com/2018/05/09/does-netgalley-work/)

Life in a Hospice – Hey, you!

Hey you – yes you! I see you rushing off. You see the word ‘hospice’ and you think death, gloomy, morbid – not for me. You search for a good crime novel instead. No death there, of course.

But Life in a Hospice is anything but gloomy. It is a book of stories, told from the heart. And from all sorts of viewpoints. Perhaps the most important word is “life”.

You want a story with a bit of love? There’s more love in a hospice than anywhere in the world. You have an urge to be moved? Yes, of course, when talking about the end of life, that goes without question.

You want to see the complexity of human relationships? For sure, that is there in abundance. Some humour? You won’t be disappointed. You may be surprised.

Life in a hospice shows what it is like to work in a hospice and, by extension, what it is like to be a hospice patient or visiting relative. It is told in their own words by nurses, assistants, chaplains, doctors, managers and even a very thoughtful hospice cook.

They tell of the withdrawn woman who blossomed under the care of the day centre. There is the man who asked to die under a tree – and they arranged it. There are the two young daughters who asked for their father to be buried with some cigarettes and a can of lager. Throughout, there is the enormous sense of ‘privilege’ to be working in a hospice.

Yes, it is about death and dying, but as you’ve never seen it before. Hospices are teeming with life – with love, laughter, arguments and tears. To quote a cliché, “all life is there”.

And if, perchance, you are wondering where you should go when your last days or near – or, indeed, are helping a relative or friend to find such a place – you will be enormously reassured.

Reviews? You can bet they were excellent.

Now maybe that was worth staying for.

Amazon: http://myBook.to/Hospice

Other e-books: https://www.books2read.com/u/bpWk0z

 

Life in a Hospice: one five star review after another

 

Life in a Hospice was initially published in 2007 with some good reviews and an endorsement from the British Medical Association. But despite its continuing relevance to people everywhere, it fell into a fallow period, with few sales and certainly no more reviews.

Imagine my pleasure, then, when I find that the relaunched version (a year ago, spring 2017) is selling well and getting one excellent review after another.

Some of these come from people who know about hospice care already:

“As a Palliative Care physician working in the hospice setting, this book was a great help to me in many ways. It helped me really understand and relate to the many roles and perspectives within the hospice, from the chef to the nursing staff in an open honest way. It helped me see other coping mechanisms and struggles and truly re-inspires me as to the good work being done.” Matt (on Amazon.co.uk)

“As a hospice volunteer, I well know the beauty that can occur at the end of life. This book is a beautifully written and thoughtful explanation of much of what occurs in a hospice.”  Janice B. (on NetGalley)

Some come from people whose own personal lives are touched by its contents:

“What a beautiful but complicated book. As the child of two elderly parents, this is a subject I think of almost daily: this book is going to make it a LOT EASIER to deal with. The advice is smart and just and should be easily understood by any level of reader. A great sourcebook for people who are or may be dealing with this subject.”  Janet C. (on NetGalley)

And some could see it might be a help in the long run

“This is an absolutely wonderful book. It’s a must-read for everyone, especially those who are not yet aware of the fact that death is an inevitable part of life. The way people in hospice care are dealing with this is, as strange as it sounds, wonderful and it may come as a surprise that it is not all darkness and gloom.” An avid reader (on Amazon.co.uk)

It does a writer’s heart good to see such a welcome for her hard work and commitment.

Revisiting Books Written Some Years Ago

Have you ever gone back to read books you wrote some years ago?  Most writers, I suspect, don’t. We write, we publish and we move on.

Some writers say that when they do go back, it makes them uncomfortable to see their earlier, less formed self.  They have learned so much in the meantime.

Indeed, some remove their own books from sale, lest readers think this is the best they can do.

Looking back with pleasure

But there is another response. Some of us return to old books to find ourselves surprised at how good they were. We have also learned much in the meantime, yet our earlier self was unexpectedly thoughtful. It is wonderful to discover.

Last year, I returned to two books I had written many years ago, which were trade-published. I was so impressed with both that I re-launched both for new readers, after getting my rights back (much easier than you think).

Ten years ago

cover of Life in a Hospice

The new self-published edition

Ten years ago, I wrote a book offering the thoughts of hospice staff about working in end-of-life care, Life in a Hospice. It had been published by a highly respectable medical publisher and had a Foreword by Tony Benn, a well loved MP. Indeed, it was Highly Commended by the British Medical Association in 2008.

But I was irritated by the lack of publicity by the publisher (taken over by a major conglomerate) and wondered how relevant it would feel today. Yes, what a delight. I was very touched by the stories and it felt fresh as a daisy!  That prompted me to take back the rights and re-publish it as both a paperback and e-book, but added a new cover.

RESULT: I must have been right, because after selling one or two books a year, it has sold nearly three hundred copies since March 2017. That’s not Harry Potter, but it is good for a book on hospice care.

Twenty-five years ago

cover of Wise before their time

Once topical, now of historical value

That experience prompted me to go back to a book I had published in 1992 setting out the personal stories of people with HIV/AIDS when it was a life-threatening disease, Wise Before their Time. It was long out of print, although there were second hand copies available on the net. I approached the task of reading it with some trepidation, as I could well have been embarrassed.

On the contrary, I found myself incredibly moved by my own book, which I had not read for twenty-five years.

Although the stories have no current relevance, as people diagnosed with HIV can now anticipate a normal life span, they had a historical significance.

Again, I took the rights back and republished it as both a paperback and e-book, again with a new cover.

RESULT: It is selling less dramatically, but selling nonetheless. And it has garnered nothing but five star reviews, which is pleasing.

Conclusions

I am not a young woman, so these books – old as they are – were not written in the full flush of youth. Perhaps if I were able to go back to writings from my twenties or thirties, I would well be embarrassed.

But for those of you who have traditional publications long out of print and wonder whether to just forget about them – think again.

Take them out and have a look. You might be pleasantly surprised. And if you are a member of ALLi, you know that self-publishing is easy.  The next step is obvious.

 

This post was first published by the Alliance of Independent Authors (ALLi)  See https://selfpublishingadvice.org/self-publishing-back-catalogue-hybrid-authors-advice/

Life in a Hospice: The Back Story

A friend asked me recently why I wrote Life in a Hospice, which explores the joys and challenges of working in a hospice from the viewpoint of nurses, doctors, managers and others in their own words.

The answer is simple. Back in the early 1990s, I had a close friend who died from AIDS, who was himself an AIDS nurse. This had made me very interested in the complex lives of people facing death, as well as those looking after them. After he died, a chaplain friend of his took me to a hospice, as he was doing an errand (but I suspected he wanted me to see it) and I was immediately drawn to the place.

Hospices tend to be places of great tranquillity and calm and I felt yes, I want to be part of a place like this. I applied to work as a volunteer in a local hospice and ended up doing so for four years. It was very satisfying – albeit sometimes demanding – work. But I was there only one afternoon a week. I was intrigued by all the regular staff whose day-to-day job was turning up to work with people who were dying.

As I was a writer, I felt this would be a good topic for a book. My books were all based on in-depth interviews, using the actual words of the people interviewed to tell readers what it ‘felt like’ to be them. I set about looking for two hospices who would agree to be part of this research and found two without much difficulty.

I interviewed roughly fifteen people in each hospice, some of whom volunteered and others were selected by the director. There were nurses and healthcare assistants, doctors, chaplains, various managers and even a very reflective chef. Everyone was more than happy to talk, especially as I promised anonymity (and sometimes changed minor details in the book to avoid identification).

Tony Benn, who was interested in hospice care, agreed to write a Foreword – and the rest is history.

The book was initially published in 2007 and was ‘Highly Commended’ by the British Medical Association. In 2017, I took back the rights and re-published it as both a paperback and e-book at a much reduced price.

You can read more about this book on my website www.annrichardson.co.uk and see reviews on Amazon at http://myBook.to/Hospice.  It is also available on other electronic readers (see https://www.books2read.com/u/bpWk0z)

Life in a Hospice – a surprise success

Life in a Hospice, my book which goes behind the scenes in two hospices to show readers how it feels to provide end-of-life care, was first published in 2007.  I re-launched it last March.  This is because the publishers were charging much too much for it and giving it no publicity – with the not surprising result that no one was buying it.  It was selling one or two copies a year.

I thought a few people might want to read it and decided to give it a new cover and a revised introduction and make it available to potential readers at a reasonable price.  I thought 50 or 60 people, at a completely rough guess, might be interested.  But I was so wrong.

No, I have been selling one or so copies a day on Amazon – indeed, well over 200 copies since its relaunch.  Mostly e-books, but some paperbacks as well.  This is not big numbers compared to Harry Potter or a few other things I could name, but it is surprisingly successful. A friend who is a writer said he wished he could see such sales.

Who is reading it?  I don’t actually know.  I would imagine many will be current hospice workers, who like to hear about others doing similar work. Or those who are interested in pursuing hospice care as a career (it’s a very good introduction to this, because it talks about not only what workers do but also how such work affects their lives). Some people who are considering hospice care for someone in their family may be reading it, too.

I personally think it makes inspirational reading, showing humanity at its best. Perhaps some readers are looking for that.

I am now making it available as an e-book in other outlets besides Amazon, such as Apple ibooks, Kobo and Barnes and Noble.

Have a look.  It might interest you, too: http://myBook.to/Hospice

 

Talking about how I came to write and re-launch Life in a Hospice: AlzAuthors website

ann-richardson-canva.png

Some years ago, I was taken to a hospice by a friend, who happened to be doing an errand. I immediately felt that this was the kind of tranquil place where I wanted to spend time. Soon after, I began to volunteer at a local hospice every Saturday afternoon. I did so for four years.

This experience had a strong impact on me, lasting even to the present day. Death – as with birth – is a very special time and I felt privileged to help people, even in small ways, in their last days.

As I was a writer, I thought the views and experiences of hospice staff would make a fascinating book. I had developed a technique, based on the kind of research I did for a living, of creating books formed around the direct views of people acquired by long and intimate interviews. Like a television documentary, it allows people to talk directly to the reader.

I undertook 31 interviews in two hospices with a whole range of staff – nurses, doctors, chaplains, managers and even a very reflective cook. They talked about the many ways in which they tried to make patients’ last days peaceful and meaningful, about the impact of such work on their own lives and, most importantly, about what they gained personally from such work. Like myself, they often used the word ‘privileged’ for being with people at the end of their lives.

The resulting book, Life in a Hospice, was, in my humble view, the best I had ever written – and I anticipated that many people would be keen to read it. It was very well reviewed, there was an article in the Times newspaper about it and it was even Highly Commended by the British Medical Association, despite not being a ‘medical’ book at all. All this was hugely pleasing.

But, alas, the breadth of the readership was very disappointing. The book was bought by many hospices and others working in end of life care, but it never took off with the general public. I quickly realized there were two reasons. First, most people do not have my fascination with end-of-life care and, indeed, avoid thinking about anything to do with death. And, second, the book was much too expensive, the price having been set by its medical publisher

I couldn’t do anything to overcome the first problem, but I took back the rights to the book and re-launched it as a very inexpensive e-book ($3.75), so that anyone who wants to read it will not be deterred by the price. It is again receiving some good reviews on Amazon. I must admit I have never heard anyone say they were not deeply moved by it. A paperback version is in the works and will be published soon.

My one caveat for this website is that the hospices in my book did not cater for people with Alzheimer’s. I can only say that the attention to the very individual needs of patients would go far when it comes to people with dementia of any kind.

This was originally published on the Alzheimers Authors website:  https://alzauthors.com/2017/06/14/welcome-ann-richardson-author-of-life-in-a-hospice/