When Marc Weide’s mother who was 65 was diagnosed with terminal cancer, she chose euthanasia. Here, we publish his shockingly frank diary of her final days
Monday February 11 2008
5.30pm: Dad is bent over the toilet bowl with a brush in his hand and a scowl on his face. I walk up to him. “Shall I give you a hand?” Dad begins to snicker, abandoning any attempt to make sense of the situation. We stand shoulder to shoulder with our backs to Mom, who paces around the patio with a newly fitted catheter in her hand.
The catheter has been put in by her nurse, Marianne to enable her doctor, who will be with us in half an hour, to give Mom a lethal injection. But instead of having a moment of peace with us, as Marianne suggested, Mom demands that we clean the toilets. Both upstairs and downstairs.
My brother, Maarten, is sitting on the edge of the bathtub, staring out of the bathroom window.
“Imagine,” he mutters. “Her last hour, spent like this.”
This is the Netherlands, where voluntary euthanasia is permitted, as well as physician-assisted suicide. This is the day my mother has chosen to die, and the toilets need to be spotless.
Three months earlier
I’m on a writer’s retreat in the UK, where I have been living for the past three years. I’m working on my novel when my mobile phone rings. The display shows it’s Maarten, calling from the Netherlands. Mom’s test results have come back.
“It’s secondary cancer in her lungs.” He pauses. “They think she’s got two to six months left.”
I phone Mom. She talks without interruption, barely taking breath, about quitting her job just two months before her retirement, about what might have happened if she had not had that innocent-looking polyp removed from her womb, about why the doctors had not investigated her lungs earlier.
The prognosis is she could live another year if she undergoes chemotherapy. But she won’t. “I’m not going to go bald,” she says. “I don’t ever want people saying, ‘How sad, that beautiful hair all gone.”
When I phone again, she sounds as if she doesn’t have time to talk.
“I’m arranging my cremation.”
“Oh … ”
“Yes, the text for the card, the location, the flowers, the coffin … I’m really busy.”
Dad, Maarten and I do not seem to be part of the equation.
Late January 2008
Dad phones. After two and a half months, Mom is deteriorating rapidly. She suffers from headaches, sickness and loss of coordination. She takes a fall while Dad is having a shower. When she has a shower, half the bathroom floor gets flooded.
Two days later, brain metastasis is confirmed. Mom is hospitalized and given drugs to repress the inflammation, but they will only remain effective for a week or two.
Friday January 25
Maarten picks me up from Schiphol airport in Amsterdam and we drive to meet Dad at the hospital. We all go upstairs together.
Mom is sitting by herself at a table near the window as we enter. She throws us a tearful smile. “My boys,” she says, as Maarten and I give her a hug. “To think that this all started in that bloody womb of mine … but I am glad I had it, to bear you two.”
The hospital staff all do a great job and Mom seems content with her care. After two hours with us, though, she becomes more demanding. She asks Dad to put things into her bag, then take them out again. She snaps when he can’t find her mobile phone.
When the palliative care coordinator, Carola, comes in to discuss the option of home care, I take Dad outside. “Dad, I’m wondering – here, Mom is in the capable hands of staff whose authority she accepts. At home, she’ll just try to be the boss.”
“Hmm. You may be right,” says Dad. We walk back, just as Mom is asking Carola whether home care really does not include vacuuming.
When I repeat my concerns to Maarten, though, he is adamant: “She ought to come home. It feels more natural if she dies there and I want to be around her for a bit. I don’t want to drive to this depressing hospital every day and leave her alone at night.”
And so the question is settled. The four of us will go home together on Monday.
Saturday January 26
In Dad’s study, I find a draft version of a mourning card saying “bye dear”. My name is on the card, along with my brother’s and Dad’s. These are meant to be our words, but I have had no part in writing them and I struggle with the bottom line: “We prefer not to receive telephone calls, visitors or flowers.”
Monday January 28
After arriving home with Mom, we struggle to share a harmonious moment. She asks again if we’ve thought about what we are going to say at her funeral. When I answer that I haven’t, Mom insists that time is short. I should look at her “expression of wish” statement – her wish to die. It needs editing. I go upstairs to the study.
The statement begins: “I, Mieneke Weide-Boelkes, am terminally ill.” It ends: “As soon as this medication loses its efficacy I request euthanasia.” Dad joins me and reassures me the text has genuinely been written by Mom.
I start editing. Then Mom calls from downstairs. “Weren’t you going to make dinner?!”
I go downstairs and start cooking with Maarten. Anything for a quiet life … because that is how it’s always been and now is not the time to change it.
When dinner is ready and I go to fetch Mom and Dad, I find them sitting in our bedroom with a man I have never seen before.
Mom introduces me to the doctor, Martin. He is holding the statement I have just edited, but all I can think is how he got in so quietly and why Mom and Dad have not bothered to let us know he is here.
Wednesday January 30
8.15am: Maarten has a run-in with Mom. He asks what on Earth she is doing with the Hoover at “stupid o’clock” in the morning. Mom does not appreciate being spoken to like that.
Things still simmer at breakfast. Mom finds fault with all the shopping we bought the previous day: the gouda cheese is too soft, the bread too sweet and why is there fruit juice in her fridge?
Monday February 4
We are just about to have lunch when Mom, who has been complaining about headaches this morning, gets up from the table. Tearfully, she shuffles to the kitchen sink. “I am so sick of it,” she says, “so sick.” She begins to make retching noises.
As Dad gets closer, Mom begins to thrash around. “It’s starting again!” she cries. “Call a doctor, quickly!”
Maarten manages to calm her down a little. Dad picks up the phone to call the doctor. Mom wants to go back to the table, but I take her upstairs to bed.
A moment later we hear feet shuffling down the stairs. The door opens and Mom appears. “I’m sort of OK now,” she says.
She has just sat down when the doctor arrives. As he sticks his head round the dining-room door and sees Mom sipping coffee, his face is all surprise.
So this is the moment Mom has specified: initial symptoms back; medication losing its effect.
The doctor says euthanasia can take place next week. Another doctor first needs to verify, though, that Mom cannot be cured, that her wish to die has been consistent, and that her suffering is unbearable.
Martin is convinced of the first two conditions but not of the third. If Mom is too energetic to stay in bed, then how is her suffering unbearable?
Mom puts her coffee down. “Well, I have to die anyway, don’t I?” Then she asks us what we think.
I interrupt: “It should be your own decision. None of us is to say anything.”
But Mom struggles to say she wants to die. Eventually I say, “I think what she finds unbearable is not so much her pain and sickness, but the fear of it getting worse and of losing control.”
When Martin is finally satisfied that Mom wants to end it, he agrees to contact the second doctor. He leaves with an empathetic nod to us all.
Thursday February 7
I wake up in the middle of the night. Mom is standing in our bedroom. She opens a drawer and takes something out. She shuffles items across the desk until she is pleased with their arrangement. Then she leaves, quietly closing the door behind her.
It is at least the third time she has been busy tidying up our room that I’ve seen this evening.
Mom’s youngest sister and her husband are visiting today. Everybody sits at the dining-room table with drinks and nibbles. Mom is giving an animated demonstration on how to polish silverware with her special gloves.
Then the secondary opinion doctor phones to say he will be with us in 10 minutes. There is a brief panic. Mom wants to change into her nightwear and get into bed before the doctor arrives, but we persuade her otherwise.
The doctor speaks privately with Mom in the dining room. After he leaves, Mom looks decisive. She says it was “a very good talk”, but does not give any further details.
Later, when the guests have gone, Dad tells me that the doctor asked him to leave the room. “Yes,” Mom interrupts, “the doctor had to ascertain if I was not being forced into euthanasia.”
Friday February 8
Doctor Martin is due to come in the afternoon to discuss further plans, but I do not see him. My brother has to fill me in over the phone because I am staying at a friend’s after a fight with Mom.
Over the last week or so, she has been complaining about my shoes and the damage they do to her floor and has been badgering me to buy a new pair at her preferred shop this weekend.
“Mom,” I say, “I was planning to stay with some friends this weekend.”
“Oh, were you!” she snaps. “And who has got more priority then, your friends or your terminally ill mother?”
I decide to go sooner rather than later. But Mom pursues me as I get my things. “Why don’t you stay with your friends next week, when I’m dead? You’ll have all the time in the world then!”
“I was planning to spend time here, with Dad.”
“Oh no you won’t,” she says. “When I’m dead, it’s just going to be your dad and me here. I don’t want you and Maarten around. And anyway, you don’t do diddly squat … ”
I lose my self-control. I shout and swear at her and storm off in a rage.
Later, at my friend Petra’s, I get a phone call from Maarten about the outcome of the doctor’s visit. Mom’s death has been scheduled for Monday February 11, at 6.15pm.
Sunday February 10
Mom’s sisters and their husbands are there for a last family dinner, together with Dad, Maarten and me – wearing my expensive new pair of shoes. Mom, even more energetic than the week before, decorates the table lavishly.
My uncles shake their heads with incomprehension. As Mom shows off her china plates, my aunts have distracted looks on their faces.
Whispering to Dad and me in the hallway, they struggle to understand why Mom is choosing to die the next day when she is bouncing around like a 40-year-old instead of a terminally ill 65-year-old. But there is also shock at her fixation on material objects and the little interest she shows in how the people around her actually feel.
Monday February 11
Again, I wake up early when Mom comes into the bedroom. It is disturbing to see her take the stones and shells from the windowsill and place them on the desk. She had only moved them on to the windowsill the previous morning.
Mom leaves and comes back again three times. After the last visit, I can hear she is hoisting the vacuum cleaner up to the attic. It is just after 6am.
It is the start of an increasingly mad day, during which Mom hoovers the whole house and does six loads of washing (one of which consists of a single white shirt). She scrapes all the woodwork on the outside of the house clear of moss and cleans the windows.
After breakfast, I find Dad fuming after Mom has given him grief for not ironing fast enough. I ask him if it helps to see her as a mental patient instead of his wife. He grumbles.
I think of what was said the night before, about Mom’s relative physical fitness and her obsession with material objects and cleanliness. I feel an increasing tension as the day progresses and I still don’t know whether it is going to be Mom’s last.
I overhear Mom’s conversation with the flower shop. After the crematorium confirms the date of her funeral, she phones to order flowers for her coffin. It is an hour and a half before the nurse comes to put the catheter into Mom’s hand.
6.15pm: The doctor arrives shortly after the scene with the toilets. Mom greets him, then disappears upstairs, saying, “Best let me potter for a bit.” Nobody sees her for another 20 minutes.
“Does it happen at all that people pull out at the last minute?” I ask.
“Yes,” Martin says. “Quite often I go home again and a new appointment is made. But in many cases the patient passes away between visits.”
When Mom comes back, listing things she has put in bags and boxes, Martin gently interrupts her: “Can I just ask you something? Is there still a lot you feel you need to do?”
“Yes,” she says, “I mean no. I’m just nervous.”
“I can always come back later if you are not ready,” says the doctor.
Mom sits down and listens to the doctor. Then she takes a deep breath and says, “OK. I am ready.”
At 7pm, with my father, brother and me around her bed as well as Martin, who has given her the injection, Mom goes to sleep.
Saturday February 16
People at funerals often say that the deceased would have approved of the ceremony. In my mother’s case, she had literally approved everything – the music, the flowers, the guest list and the restaurant we went to afterwards.
My main regret is that there were such clashes between us in the run-up to her death. Perhaps if we had challenged Mom more over the years, keeping her ever-increasing demands in check, we could have been at peace as a family, instead of at war over shoes and toilets, right to the bitter end.
We all need to be sensative to someone who is terminally Ill. Although it may be hard for all of us as we all will struggle in the end, both patient and family and friends, we need to honor the wishes of our loved one.
The only thing missing here was prayer and love abounding. I missed seeing any hugging or love being shown from either direction.
If you have a loved one who is terminal, you can never give them too many hugs or words of encouragement. Don’t be afraid to tell them you are committed to loving them until the very end, or you don’t know how you will live without them.
Anger is a natural feeling for both the terminally Ill and their friends and family. All feel they have been cheated and are looking for who to blame. Even when you don’t feel they deserve it, because of their behavior, continue to hug them, and encourage them. Sometimes they just need to be held and if they begin to cry just keep holding them in silence. You’re just being there for them will help!