On December 18th, my dad died with his mouth open. We all die with our mouth open. But we don’t all die a good death.
His was dignified and peaceful and worth sharing. It was a death surrounded by loved ones. A death in silence, without much pain. A death in a world constructed for death in a palliative care centre in the outskirts of Montreal, on a windy day with grey clouds pregnant with snow. Over the last year, my mother, a nurse, cared for him at home but in early November his stage IV prostate cancer paralysed him from the waist down and La Maison Au Diapason became his last home.
A home of sorts
Diapason is a large house in the middle of the forest, down a dirt road off a busy highway. Built in the style of all canadian houses, with an inverted V shaped rooftop it is very long. Decorated in lush draperies and warm colours the reception area (with an ajacent small play room for kids) is welcoming but eerie. Everything is quiet and guests are invited to leave their boots behind to put on slippers when they come in. You sign in with your name and the number of the room you are visiting. No names. You will never know who else is staying there. You’ll only know that someone has died by a little tea light that the staff will light up at reception and the nurses’s station. The average stay is 16 days.
The resident’s rooms are on the left-hand side along a corridor that leads to a communal dining room. Guests can only eat in this room and can’t eat in the resident’s rooms. There are also quiet communal rooms for the families which are dimly lit, with cozy sofas and chairs, Kleenex boxes, and bookshelves. One even had a white piano in it.
The focus of the private rooms are a large hospital bed, a wheelchair near it and a large plastic covered lazy-boy on wheels. All of them face a foldout couch a flatscreen TV with storage underneath it that also hides a small fridge. The back of the room opens up to a garden and a view of Mont Gale nearby. There is also an en-suite bathroom. The colours of the room are soft, but not pastel: mustard and light apple green walls. The curtains are heavily embroidered with intricate patterns. The door closes shut with a soft click. There is an emergency button on a cord that reaches the bed. Everyone always knocks. It is the perfect blend between a hospital room and a hotel room and you never hear the neighbours.
What’s most important to consider and really affects the environment is that you aren’t there to be treated. You are there to die in the most painless way possible. Long-term medication is completely removed (anything to prevent cholesterol, diabetes, etc) making meals a real party of cream, sugar and sauces. The same doctor will come by for a long chat every morning for a week at a time. Nurses would come round and volunteers would come by every hour or so to deliver medication, give a resident a bath, change their diapers or their urine bag, wash them before a meal. You are never alone for very long. You can never be lonely.
The gift of time
In the times when we were alone, we talked, we helped dad work on the drones he wanted to fix for my brothers, we read while he slept, we ate sweets and chocolates brought by guests. My mom slept on the folded-out couch and was with him everyday and every night. My brothers, their families and I visited in turn almost every day.
Throughout his six week stay he was given enough time to have many wonderful conversations with those who had come by. He made calls to former colleagues he’d appreciated working with, letting them know where he was. I was able to thank him for all he had done for me. We were able to have conversations that ring in my ears for the rest of my life. He had begun to say goodbye.
For what was to be his last meal, a couple of friends of my parents came by with a large Tupperware fridge with some game they had hunted and a meal they had prepared at home. The care home director had given her blessing to have the staff cook the meat in the communal kitchen. We had asparagus on a bed of mash with elk. It was delicious and dad was in excellent shape. During his stay, he had fattened up, was active even if his paralysis had continued to progress.
He died the following day on December 18th at 2:03pm. His heart gave out after a pulmonary embolysm. He was not in pain thanks to the many drugs which were administered in his last hours. Like someone running for a very long time, he simply ran out of breath. We were visited by the staff who had cared for him, the doctor who had overseen the last hours, but they let us live his last moments alone with him. This was a family thing. And we were all there at his side, to witness the end of a life and the beginning of a life without him. We were there as witnesses to a life well lived, full of love.
This is a setup which would normally cost CAN$450/day but is free because the centre is a non-profit that relies on donations which are match-funded by the Québec government. All my family had to pay for was the food and drinks provided by the communal kitchen, a real relief for a family going through a difficult experience. This is something that isn’t accessible around the world yet, but as more of our elderly population dies, it’s bound to be essential, as a society, that we learn how to die well, how to provide our loved ones with a good death, not a death in a hospital, rushed, in a shared room, in pain.
The way this experience was designed probably never required the presence of a traditional designer but was done in a way that was carefully considered from the interiors, the layout, and the choice of the kind, considerate staff and volunteers. Not an easy thing to put together, but when I left the care home with my family and dad’s belongings in boxes, I was hoping that I too, would come back to this place and have a good death of my own one day.