I'm going to die on Monday at 6.15pm - Tilted Forum Project Discussion Community

Cynthetiq · 08-24-2008, 09:09 AM

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Source: Guardian
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I'm going to die on Monday at 6.15pm

When Marc Weide's mother was diagnosed with terminal cancer, she chose euthanasia. Here, we publish his shockingly frank diary of her final daysMarc Weide The Guardian, Saturday August 23 2008 Article history

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 snigger, abandoning any attempt to make sense of the situation. We stand shoulder to shoulder with our backs to Mum, who paces around the landing with a newly fitted catheter in her hand.

The catheter has been put in by nurse Marianne to enable our GP, who will be with us in half an hour, to give Mum a lethal injection. But instead of having a moment of peace with us, as Marianne suggested, Mum demands that we clean the toilets. Both upstairs and downstairs.

My brother, Maarten, is sitting on the edge of the bath, 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. Mum's test results have come back.

"It's secondary cancer in her lungs." He pauses. "They reckon she's got two to six months left."

I phone Mum. 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 want people saying, 'How sad, that beautiful hair all gone.' Never."

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, Mum 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. Mum is hospitalised and given drugs to repress the inflammation, but they will only remain effective for a week or two.

Friday January 25
Maarten collects me from Schiphol airport in Amsterdam and we drive to meet Dad at the hospital. We all go upstairs together.

Mum 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 Mum 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, Mum 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 Mum 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 "dag lief" ("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 Mum, 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, Mum 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 Mum.

I start editing. Then Mum 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 Mum and Dad, I find them sitting in our bedroom with a man I have never seen before.

Mum 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 Mum and Dad have not bothered to let us know he is here.

Wednesday January 30
8.15am: Maarten has a run-in with Mum. He asks what on Earth she is doing with the Hoover at "stupid o'clock" in the morning. Mum does not appreciate being spoken to like that.

Things still simmer at breakfast. Mum 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 Mum, 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, Mum 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. Mum 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 Mum 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 Mum sipping coffee, his face is all surprise.

So this is the moment Mum 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 Mum 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 Mum is too energetic to stay in bed, then how is her suffering unbearable?

Mum 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 Mum 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 Mum 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. Mum 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 nocturnal bout of tidying up I've seen this fortnight.

Mum's youngest sister and her husband are visiting today. Everybody sits at the dining-room table with drinks and nibbles. Mum 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. Mum wants to change into her nightwear and get into bed before the doctor arrives, but we persuade her otherwise.

The doctor speaks privately with Mum in the dining room. After he leaves, Mum 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," Mum 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 Mum.

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.

"Mum," 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 Mum 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. Mum's death has been scheduled for Monday February 11, at 6.15pm.

Sunday February 10
Mum'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. Mum, even more energetic than the week before, decorates the table lavishly.

My uncles shake their heads with incomprehension. As Mum 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 Mum 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 Mum 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.

Mum 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 Mum 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 Mum 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 Mum'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 Mum's last.

I overhear Mum'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 Mum's hand.

6.15pm: The doctor arrives shortly after the scene with the toilets. Mum 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 Mum 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.

Mum 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, Mum 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 Mum 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.

About this articleClose Diary of terminally ill woman who chose euthanasia
This article appeared in the Guardian on Saturday August 23 2008 on p1 of the Family features section. It was last updated at 00:11 on August 23 2008.

I'm very much a fan of euthanasia when the quality of life is reduced at any point in time of one's life. In 2003 the foreign film Les Invasions Barbares and in 1981 Whose Life Is It Anyway? with Richard Dryfuss. I remember one of the jokes from that one, "Why did the paraplegic cross the road? Because he was stapled to the chicken!"

Earlier this year, I spoke to my aunt who was passing away from cancer. Towards the end it was hard to keep up the phone calls to her because she was just incoherent and sometimes beligerent. I just had to bear with it, and sometimes I just didn't have the fortitude to do so. She never admitted that she was in pain to any family members. After she passed away, I found out that she only told her first husband how much pain she was really in.

I'm very partial to Les Invasions Barbares and how that transpired. I won't give away the story, maybe after you watch it you may change your mind as to how to choose your own death.

snowy · 08-24-2008, 09:26 AM

My cousin in the Netherlands chose euthanasia after his stomach cancer came back and became terminal. He had a large family and he wanted to give them time to say goodbye. Here in Oregon it's also legal; the Oregonian newspaper did a special feature in 2007 on one of their researchers who chose assisted suicide: Lovelle Svart - Living to the End - The Oregonian

I believe it's a personal choice, and it's not my place to say whether or not another person should keep living. I couldn't say for myself whether I would choose it or not, as I think it's a bridge you have to cross when you come to it, but it's nice to know it's a choice.

girldetective · 08-24-2008, 09:35 AM

I knew Lovelle for many years, through the end.

She had hardships, but left us in the manner she chose and was most comfortable with.
And she left us better.
She made sure she did.

ASU2003 · 08-24-2008, 01:46 PM

It is one thing to want to die instead of being hooked up to life support, brain dead, or if you are paralyzed. But this woman seemed a little too alive.

shakran · 08-24-2008, 02:24 PM

Quote:

Originally Posted by ASU2003

It is one thing to want to die instead of being hooked up to life support, brain dead, or if you are paralyzed. But this woman seemed a little too alive.

She had uterine, lung, and brain cancer. There is no way that she was going to live. She was already deteriorating, feeling sick, falling, and seemingly having some cognitive issues.

Why is it that western society thinks we have to wait until we are a drooling mass of flesh, unable to do anything for ourselves, before we are finally allowed to die?

At the end, my father couldn't do anything except type, slowly, with one finger. He couldn't bathe himself, couldn't get on the toilet by himself, couldn't wipe when he was done, someone had to feed him and clothe him. He couldn't even sleep in a bed because if he had to use the toilet during the night lifting him from the bed to his wheelchair and then from the wheelchair to the toilet would take too long and he wouldn't make it. Instead he slept in his wheelchair. And even then, he didn't always make it. He'd sleep in an 80 degree room under 4 blankets, wearing mittens and a wool hat because all of his voluntary muscles were virtually gone, so he couldn't generate enough heat to keep him warm. He coughed and choked constantly because his pharyngeal sphincter wasn't strong enough to keep his saliva from being aspirated into his lungs (in fact, that's what gave him the pneumonia that led to his death). All his food had to be cut or mashed up into tiny little pieces or he'd choke on it. The fork was almost too heavy for him to lift to his mouth, and he had to have a special fork like little kids use, with a very thick handle, because his fingers couldn't grip a normal fork. He couldn't go far from home because even handicapped public bathrooms couldn't accommodate what he needed - they don't have lifts in places like that. So there he was, trapped in his own body, never leaving his wheelchair, choking and unable to move, this former college track star and Vietnam veteran who once had thigh muscles like tree trunks and was known as "Fast Eddie." Unable to even hug his wife because he couldn't lift his arms, unable to sleep in the same bed with her, unable to even pet his dogs. A broken shadow of what he had been, utterly miserable and wishing it would end.

Where is the justice or compassion in forcing people to live like that?

Cynthetiq · 08-24-2008, 05:57 PM

Quote:

Originally Posted by ASU2003

It is one thing to want to die instead of being hooked up to life support, brain dead, or if you are paralyzed. But this woman seemed a little too alive.

what is the definition of "too alive"? at what point does one consider the definition of "quality of life"?

*Nikki* · 08-24-2008, 06:19 PM

Quote:

Originally Posted by shakran

Where is the justice or compassion in forcing people to live like that?

Well written shakran. I am sorry about what happened to your father.

snowy · 08-24-2008, 07:07 PM

Quote:

Originally Posted by girldetective

I knew Lovelle for many years, through the end.

She had hardships, but left us in the manner she chose and was most comfortable with.
And she left us better.
She made sure she did.

That's really touching to know, girldetective.

And shakran, thank you for sharing.

FuriousAvatar · 08-26-2008, 02:32 AM

I think this is a very personal choice that only the affected person could possibly decide on. What one person says now while in full health and peak physical condition could be completely different as they feel their body shutting down from a terminal illness. I, personally, believe I would choose euthanasia if I was dying and could not care for myself, but I cannot say that for certain until I was faced with the decision.

JustJess · 08-26-2008, 02:51 AM

I have seen this happen to my own family, thankfully not quite as prolonged as it seems to have been in Shakran's family... and I see no reason why anyone should have to "live" like this. I would rather knowingly choose the manner of my death than to have that kind of incapacitation, with my family's last memories tainted by what I had become, and not who I had been.

While it would have been nice for this guy's family had his mom not gone a bit OCD in the end, at least they got to say goodbye properly, and didn't have to watch her completely deteriorate.

08-24-2008, 09:26 AM	#2 (permalink)
snowy Kick Ass Kunoichi Location: Oregon	My cousin in the Netherlands chose euthanasia after his stomach cancer came back and became terminal. He had a large family and he wanted to give them time to say goodbye. Here in Oregon it's also legal; the Oregonian newspaper did a special feature in 2007 on one of their researchers who chose assisted suicide: Lovelle Svart - Living to the End - The Oregonian I believe it's a personal choice, and it's not my place to say whether or not another person should keep living. I couldn't say for myself whether I would choose it or not, as I think it's a bridge you have to cross when you come to it, but it's nice to know it's a choice. __________________ If I am not better, at least I am different. --Jean-Jacques Rousseau

08-24-2008, 09:35 AM	#3 (permalink)
girldetective sufferable	I knew Lovelle for many years, through the end. She had hardships, but left us in the manner she chose and was most comfortable with. And she left us better. She made sure she did. __________________ As far as possible, without surrender, be on good terms with all persons...be cheerful; strive for happiness - Desiderata

08-26-2008, 02:51 AM	#10 (permalink)
JustJess Unencapsulated Location: Kittyville	I have seen this happen to my own family, thankfully not quite as prolonged as it seems to have been in Shakran's family... and I see no reason why anyone should have to "live" like this. I would rather knowingly choose the manner of my death than to have that kind of incapacitation, with my family's last memories tainted by what I had become, and not who I had been. While it would have been nice for this guy's family had his mom not gone a bit OCD in the end, at least they got to say goodbye properly, and didn't have to watch her completely deteriorate. __________________ My heart knows me better than I know myself, so I'm gonna let it do all the talkin'.

08-24-2008, 01:46 PM	#4 (permalink)
ASU2003 immoral minority Location: Back in Ohio	It is one thing to want to die instead of being hooked up to life support, brain dead, or if you are paralyzed. But this woman seemed a little too alive.

08-26-2008, 02:32 AM	#9 (permalink)
FuriousAvatar Crazy Location: Juneau, Alaska	I think this is a very personal choice that only the affected person could possibly decide on. What one person says now while in full health and peak physical condition could be completely different as they feel their body shutting down from a terminal illness. I, personally, believe I would choose euthanasia if I was dying and could not care for myself, but I cannot say that for certain until I was faced with the decision.