We are programmed to remember the emotional times in our lives. We remember times of anger, sadness, fear and happiness. So we remember birthdays, weddings, holidays and parties but we also vividly remember death, tragedy and loss. The days around dying are packed full of all of these emotions – we are sad, angry, frightened but we also laugh and love. We remember every detail of a final illness, because of this emotional rollercoaster and these memories go on to colour our grief and our future.
That’s why we have to get dying right and that’s why Christmas, the Big C, is so difficult to navigate! The last Christmas will be remembered in glorious heart-rending technicolour.
And Christmas starts long before the 25th. From early December, the tension rises and the questions start:
“Will I live to see Christmas?”
“I don’t want to die at Christmas and wreck my family’s memory of Christmas forever.”
“What can I buy my Mum for Christmas – she is dying, and I don’t know what to get her?”
“I can’t believe this is our last Christmas together – we want to be at home.”
“There will be an empty chair at Christmas dinner this year.”
“Don’t let my Dad die on Christmas Day – it would just be too sad.”
“How can we tell the kids that Mummy won’t be here for Christmas.”
These are some of the real words I have heard over the years as a hospice doctor. Our ability to predict and influence the future gets really tested in the weeks leading up to Christmas – our crystal ball needs a polish. Christmas becomes a universal milestone, and sometimes a millstone!
The internet has transformed Christmas though – not just for disorganised people like me who can never get to the shops, but for people who haven’t the energy or breath to cope with crowded stores. Buying Christmas presents for those you love is often a last act of generosity and grace. Often patients in the hospice would get the nurses to help choose online presents in the dark hours of the night, when they couldn’t sleep. Retail therapy often helps more than a sleeping tablet!
I remember bringing Christmas early on many occasions. Eve, a young Mum dying of ovarian cancer, wanted to see her two little girls open their presents, and yet we knew from Eve’s blood tests that she was unlikely to make it to Christmas. Suggesting that we should bring Christmas forward was a difficult conversation. “You mean I won’t get to December the 25th?” “I don’t know, I hope you do, but lets not take the risk. You are well enough for Christmas this week – lets do it! And if things stabilize and you get to December 25th, you can have another Christmas!”
So decorations up, tree decorated, presents wrapped and in come two excited little girls. They really don’t care that its only December 11th! They just want to unwrap presents and eat sweets with Mummy. Photos are taken, tears are shed…and an amazing memory has been created for this family. A memory that will mean so much.
We tried as much as possible to get patients home for Christmas. But for many, this just wasn’t possible – so every year, there were patients whose last Christmas, was a ‘Hospice Christmas’. I worked 18 ‘Hospice Christmas Days’ and every one was different – but the thread that ran through was selflessness from the nurses who were leaving their own families alone, and the respectful creation of memories for patients and families spending this special day together for the last time.
I learnt that you can still have laughter, enjoy bad cracker jokes, drink some champagne alongside the morphine and be grateful for presents that you weren’t going to live long enough to use. The poignancy of celebrations in the face of imminent mortality was huge.
Nurses always went the extra mile. They bought individual gifts for every patient, with stockings slipped quietly into each bedroom on Christmas Eve. There were family gatherings in every room but also respect for those who didn’t want to join in. Christmas lunch was often served at the bedside, for the whole family group. I remember John, a patient who simply had no appetite and was dreading the prospect of having to eat Christmas lunch with his excited family. The amazing hospice chef, Chris, together with his band of kitchen volunteers, created a miniature Christmas meal, with really tiny portions of turkey, roast potatoes and gravy. John managed a few bites which was a symbolic last Christmas lunch for his family to remember. Eating together is a big part of celebration in every culture – but can be a source of dread for those who no longer get pleasure from food.
So my memories of ‘Hospice Christmas’ are ones of peace, social connection and intuition. Getting the tone right for each patient and family – when to be upbeat, when to leave a family to cry and when to join in the laughter. I remember the relief that Christmas Day had passed without a death. I remember the overwhelming sadness when a patient did die on Christmas Day, and the awesome dignity with which the nurses supported families in their grief. Quietly comforting a family in the midst of tinsel and unwrapped presents is not easy.
So the Big C is a challenge for all, for those who are leaving the world, those who are staying behind and those who are watching on the sidelines. Hospice and Christmas are not words that sit happily in the same sentence and yet, year after year, I saw the hospice team do it so well.
Families must have the last word. Shawn did die on Christmas morning at the Hospice of St Francis, in Hertfordshire. Here is what his brother wrote:
“Early Christmas morning at the hospice.
The quiet bustle of care goes on as if I was at home. The little things are the most important – always being called by your name, allowed to be part of the transition with dignity and comfort, even at Christmas. Here you are part of a huge wheel. I don’t have the words to express the care we got, we were made to feel needed and part of something much larger than Shawn’s family.”
Shawn died an hour after this was written.
This article originally appeared on the UK edition of ehospice.