When you’re caring for a loved one who is dying, the social care system can be overwhelming. Richard Littledale recalls how he and his late wife Fiona had a much-needed helping hand in the form of Sue Ryder Nurse Gina.
When my wife, Fiona, was diagnosed with terminal cancer in April 2017, it wasn’t a big surprise.
This particular cloud had been gathering for seven years. Occasionally it had been hidden by a patch of blue sky, but always it had been there.
My emotions on being ‘signed off’ from a tertiary hospital were mixed. There was fear that "nothing more can be done"; there was relief at no longer having to make a journey that exhausts for no reward. And there was also a lot of uncertainty at being ‘signed over’ to the care of our local West Berkshire Sue Ryder hospice team.
All at once the home was the epicentre of care – it quickly became a very busy place.
There were visits from the local GP, the nurse practitioner, the district nurse, the oxygen team, the occupational therapist, the stair lift engineer and more besides.
The flood of well-intentioned care was at times overwhelming, and both patient (Fiona) and carer (me) felt they were losing their voice.
“Gina became our champion in the whirlwind of care”
Into the midst of all this stepped Gina: our Sue Ryder Nurse.
Snappily dressed and with no professional trappings but an ID badge, she soon became a champion in this whirlwind of care. Gina made it clear from her first visit that her objective was to fulfil Fiona’s wishes in so far as she possibly could.
In order to understand what they might be, she patiently asked all about Fiona, the wider family and our story. The time taken to do this, with unhurried thoroughness, was a huge gift.
Armed with that knowledge, she soon became an advocate for us. She was the one who put us in touch with the palliative care consultant; she was the one who arranged to see the occupational therapist. When the medical system got tangled and prescriptions got lost between doctor and pharmacist, she stepped in to sort it out.
The speed with which her number was added to my phone book is testament to the lifeline that she became.
Most professionals involved in such a situation will say that they are there not only for the patient but the family member who provides the care. They mean it, but are rarely in a position to deliver it. Gina meant it.
“A vital part in a testing journey”
As Fiona’s condition declined, Gina was the one who sat with me as I made the difficult decision to step back from work. Acting on her advice, I did so and it proved to be timely. Although none of us knew it for sure, there was less than a month to go at that point.
When Gina attended Fiona’s thanksgiving service, I was delighted – but not surprised. In truth, the level of compassion and engagement that she’d shown throughout her short time caring for Fiona meant it was simply a continuation of what she’d already delivered.
Since then, I have had two post-bereavement visits from her, and I prize those moments highly. The tears shed at the sight of her departing car were testament to the vital part she has played in a testing journey.
“Sue Ryder was the best kind of friend”
When you or your loved one are the ‘baton’ passed from the tertiary hospital to the palliative care team, emotions are mixed. After all, the palliative care journey is an inexorable one from a puzzling A to an unwelcome B.
Sue Ryder – encapsulated in the warm, wonderful and highly skilled nurse Gina – was the best kind of friend on that journey.
She was the friend who remembers the places you’ve passed through even when you’re too muddled to remember them yourself. She was the friend who never looks at her watch as the journey passes. She was the friend who knew the right people to join the train at the next platform, and she was the friend who was still there when the train disappeared over the horizon.
Postcards from the land of grief
Since Fiona’s death, I have been writing a series of postcards from the land of grief. It is a perplexing place, full of unexpected cliffs and mountains, where the only view is backwards.
It is a place where you feel that you don’t belong – as if parachuted into a strange land. It is a place where the more you adjust, the more you feel as if you are betraying that old country in which you used to live. It is a place where the shadows are long and occasionally scary.
If you are entering that land, or the one that precedes it, I suggest you drop Sue Ryder a postcard. On it you should write that most traditional of postcard phrases: ‘Wish you were here’ ...and they will be.
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Husband of patient
Richard's wife Fiona was cared for by Sue Ryder Hospice at Home Nurses during the last few weeks of her life. Since then, he has been chronicling his journey through grief via his personal blog http://richardlittledale.me.uk.