Image design: Archi Banal
Image design: Archi Banal

SocietyJune 19, 2023

In their own words: Capturing the life stories of terminal patients

Image design: Archi Banal
Image design: Archi Banal

To mark National Volunteer Week, we share the work of Ann Topp, who listens to the memories of hospice patients and gifts them back a book of their life.

It’s a Thursday morning, and 70-year-old retiree Ann Topp is welcomed into the home of a dying stranger. After the patient’s family has been ushered out of the room, she hits the record button on her dictaphone, double checking that the red light is glowing and the numbers are ticking over before gently prompting, “When I left last time, you were telling me about your best friend at high school.” The patient settles into her La-Z-Boy chair and launches into an animated account of the time they set fire to the headmaster’s satchel, her face coming alive with joy at the memory.

Ann is one of 18 volunteer biographers for Te Omanga Hospice in Lower Hutt, documenting the life stories of terminally ill patients, a therapy of sorts that helps facilitate a “good death” by reflecting on the richness of a life well lived. A dog lover, keen golfer and French film aficionado, she is the perfect person for the role as she appreciates a good yarn and radiates kindness, compassion and warmth. “I love people and I love listening to people’s stories, so it’s a real pleasure, the most privileged volunteer position that you could ever have.”

 It all started 14 years ago when Ann was still working as a video editor at TVNZ. A friend’s father had recently died and reading his hospice biography made a huge impression on her.  “I just thought it was the most amazing thing to offer a patient.” She immediately applied and interviewed for a volunteer position, did some basic training and has been collecting stories ever since. 

Ann Topp volunteering at the hospice op shop (Image: supplied)

Before she meets a new patient, Ann is given only a few basic details – their name, age, illness and family situation, but over the coming weeks she will grow to know them intimately. She has helped people with terminal cancer, motor neuron disease, MS and Parkinson’s, her patients ranging in age from late 90s, all the way down to her youngest, a woman in her 30s. Not surprisingly, she finds the younger ones with small children particularly hard. 

No matter their circumstances, Ann has found that every single person has an extraordinary life story to tell, even though most of them don’t think so when they first start. Despite having limited energy and time left in this world, her patients are always excited to see her, their sessions together a highlight of their week. A trip down memory lane can provide a temporary reprieve from medical interventions and endless questions about their illness. “The biographer doesn’t need to know if you have eaten anything today, it’s not having your dressing done or being helped to the loo.” Ann finds it interesting that it’s very rare for a person to even mention their illness once during their time together.

As the patient talks, Ann listens without judgement and records the stories exactly as they have been told so that “anyone who reads the biography feels like that person is talking to them”. She encourages with few prompts, the golden rule being that she doesn’t interview the subject or guide the narrative in any way. She does admit to having broken this on one occasion though.

When a decorated military man spent the majority of his storytelling recounting details of defence exercises rather than touching on anything personal, she felt it was important to ask about his doting wife, and by doing so she was able to capture something rare and very special: “She was the most perfect mate in the world. When I went on a posting I missed her more than the children. She became my best friend as well as my treasure. She really is my right hand man and you can’t exist without a right hand man, you know.” He died that night but Ann is thankful for the comfort those kind words brought to his grieving widow.

Life is a rollercoaster of ups and downs, and the biography sessions capture the full spectrum of human emotion as patients share the things that have moved them or tickled them the most, sometimes things they have never told anyone before. From stories of sexual abuse to happy memories of family holidays, Ann says “you can hear their sorrow, but then they smile an awful lot too”.  Reflecting on their life in all its mess and glory can be very healing for the patients, with the completion of the book itself almost secondary to the process. The magic of what happens to the storyteller in the telling of their story is what matters.

These biography sessions are tiring for the patients though, so after one hour Ann leaves them to their day and returns home to decompress over a cup of tea before uploading the audio file to her computer, ready to transcribe. She often finds her thoughts lingering with the patient, wondering what will happen next. It would be tempting to use their stories as material for the next dinner party, but she is only allowed to repeat what she has heard to her husband or biography “buddy”. She recalls a Black Power member who shared particularly colourful anecdotes of his life in and out of prison. “I could have entertained people for days with his stories, but you can’t go around talking about your patients.”

After five sessions in person and many hours spent at the computer, Ann finishes the biography – 40-ish bound pages crammed with memories and a handful of carefully selected photographs – and visits her patient one last time. It is a bittersweet moment. She loves seeing the excitement in their eyes, but as she leaves them to devour their life story in privacy, she knows that this is their final farewell.

Although it doesn’t pay to get too attached, Ann does grow quite fond of the “absolute darlings” she works with. When the inevitable phone call comes that they have passed away, she is always saddened by the news, “You immediately think of their family and know how hard that is going to be, but you feel grateful that you did that job for them”. Biographers are generally encouraged not to attend the funerals, but with a wobble in her voice she talks about making an exception for four very special people who she still “carries around in her heart”.

Ann takes an enormous amount of pride in being able to help people in their time of need, and that extends to their whānau too. With a loved one newly departed, the biography becomes something special for those left behind to cherish. “It can make a difference for them to have this book with a dad saying how much he loves his kids or even just telling the story of the time he finished cementing the drive and made their mother cross backing over it.” 

Despite spending so much time sitting in close proximity to death, Ann does not find the work at all depressing and is blown away by how accepting her patients are of their terminal diagnoses. She thinks this experience has made her more comfortable with her own mortality. “You very quickly have that acceptance, that dying is part of life. I’m not frightened of my own death anymore”. 

And when the time comes for the sun to set on her own extraordinary life, Ann will definitely call on the services of a volunteer biographer, because apparently she has some terrific tales she would like to tell.

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