Time to Die
The email landed in my inbox and I stared, sadly,
at its content.
I'm glad i was able to start discussing euthenasia with you yesterday.
It is inevitable, just as the wheelchair was, just as the peg was,
or live-in care.
I don't have a precise schedule, but i would say at the current
rate of decline in another six months or less will be time to die.
what i need to do is get everyone's support on this. I also need
a form of words to say that i have made this decision now (i have
thought about it from day one of my diagnosis) and would ideally
go for assisted suicide. In our country this is illegal but i would
be willing to travel to Switzerland and be helped by Dignitas if
necessary. If i went early enouh my helpers could even enjoy a few
days holiday! No reason why it has to be an entirely morbid affair,
like a funeral.
My elder brother, John, 55, a musician, had been diagnosed
with Motor Neurone Disease, a terminal, progressive muscle-wasting
disease in March 2001. By April 2002 his voice had started to fail
and he found it hard to make himself understood. Very soon all further
communication was limited to computer keyboard or email.
The steady decline in John's health led to his decision
in February 2003 to seek the help of the Swiss charity Dignitas
in ending his life. Ever since his diagnosis John had tried to keep
one step ahead of the disease: he acquired a wheelchair while he
could still get around with a walking stick, he had a PEG (Percutaneous
Endoscopic Gastrostomy), a small tube leading through his stomach
wall, ready for the day when he couldn't take solid food any longer.
Now he was planning for the day when he no longer felt life would
be worth living.
Prior to his diagnosis John was very fit: a keen runner
he had taken part in many marathons, ran most of the Ridgeway path
and cycled long distances. His first symptoms were minor, a limp
(which he attributed to an old running injury), a slight slur in
his speech and occasional choking fits. He also suffered from uncontrollable
bouts of crying (lability) which happened apparently without a cause
and caused him great distress, especially at work.
Bit cold for the garden today, but I sat out for a while having
an elocution lesson. I'm trying to rescue what is left of my speech,
brushing up certain phrases and words that come out wrong (i.e.
90% of my speech). Trouble is that my emotions keep getting in the
way and I waste time crying and laughing or both.
Almost immediately after being diagnosed, my brother's
relationship with his partner broke down and some friends offered
him a room in a nearby town. This arrangement soon ended however
and John was found a place at a nursing home in Leighton Buzzard.
As one of the youngest and most able of residents he suffered greatly
from the noise of the dawn to dusk television used to 'entertain'
the older people. Initially a temporary measure for a few weeks,
it was eventually six months before John finally moved into his
own flat in Milton Keynes.
In late January 2003 John had to have a live-in carer
as he was becoming more infirm. Christine, an angel from Australia,
arrived on a three-month contract and they quickly established a
routine that suited them both. Once the morning shower and breakfast
were out of the way John spent most of the day composing music using
his computer and keyboard and his carer was free to do her own thing.
Unfortunately his angel's visa ran out and she left for Scandinavia
at the end of April. New carers arrived, and left, in quick succession.
Poorly trained and often with little knowledge of John's needs,
he angrily rejected them one by one as they failed to reach the
high standards set by Christine. The first replacement had only
been with him for a few days when I received a copy of this email
he had sent to the care agency.
This is hopeless. You have sent me the wrong kind of carer. in yr
haste to get the position filled you have sent anyone, probably
just the latest interviewee, hoping to get away with it. my carer
did not even [know that] i required a particular kind of person,
and no-one seems to know how much is involved in supporting me.
The result is that i am in more pain, under more stress than ever.
i have had one decent nights sleep in the last week.
i supose it is thought that because i wish to die nothing matters
anymore. but even a suicide would sit on his sofa to make the noose
rather than sit on the park railings.
A replacement carer was quickly found but the problems
continued. My partner and I found ourselves training the carers.
Hopefully it's just a bad day following another but i feel worse
than ever in terms of my disability, as if all this fuss and furore
have pushed me further down the hole.
Sorry, but i feel frightened and alone. I am hanging on this afternoon
waiting for Peggy's visit. To give me some link with reality.
This morning I found myself thru a demo of transfering when I just
got too tired and missed my grip on the arm of the shower chair.
I lay there slipping, not caring if I fell on the floor, while my
carers, two almost complete strangers, attempted to keep me on the
chair. Eventually I summoned my wits and strength and didn't fall.
It's awful. Without yours and Michael's help i don't know where
Communications with Dignitas were slow and John's
frustration with the charity, his carers and his deteriorating condition
led to him writing this note to them that same day.
I contacted you first three months ago. since then we have had nothing
but missed communications and delays. You never answered my last
email about gettting a date for me to come to Zurich.
I want to be helped to die. I keep trying to keep away from the
desire to die and all it does is come back again, each time with
renewed force. No-one in England will help me. I thought the Dignitas
creed was "to live and die with dignity". all i am doing
now is despairing with no dignity at all.
At John's request I wrote, emailed and faxed Dignitas
almost daily and eventually, on May 12th he was given a date to
die - 26th May. I sent him the details in an email headed 'You have
a date - take a deep breath before reading this' at teatime. He
replied at 9.50pm.
The good thing about this date, which I welcome and accept wholeheartedly,
is that the next carer will now be a wonderful lady who will be
an angel of mercy etc and in other circs I would be tempted to put
off the inevitable, as i let it drift with Christine.
Life is like that, isn't it?
I know you need time to grasp the reality of what is happening to
your poor ole bruv but can you make the flight arrangements or whatever
Peggy is OK with that date but concerned about the possibility of
it being very busy being a bank holiday. If you need help with the
practical arrangements i am sure she would be willing and able.
John's friend Peggy and our sister Margaret had asked
to accompany us on the journey.
My brother's final email to me was sent on Wednesday
22nd May. Shortly afterwards he sent his final carer away and asked
my partner, Michael, and me to look after him for his last few days.
He decided to ask some of his friends to Willen Lake
on Saturday 24th May to say goodbye. At his request, Michael, Peggy
and I would read some of John's words. He would give away copies
of some of his own favourite compositions: he made the CDs, we made
attached is a poem i wrote today that someone might read on sat.
also the raw text file for Michael doing a cover for another cd.
Hope you are relaxing this evening,
one day i was put on quinine for night
one day i gave up cycling because of problems with my right leg
one day i realized i was talking strangely
one day i was walking by the canal and my right leg was dragging
very badly despite the gentleness of the exercise
one day i realized i couldn't walk the half mile to the local shops
one day my right hand was so bad i gave up acoustic guitar
one day i couldn't shower standing up anymore
one day i spent half an hour choking on a can of soft drink and
realized i couldn't swallow properly anymore
one day i realized that only a few people now understood my spoken
one day my right hand was so bad i gave up trying to play single
notes on the guitar
one day i was no longer able to walk at all
one day i could no longer eat or drink anything at all
one day my right hand was no longer useable
one day i could no longer get out of bed without help
one day i could no longer compose, even using the computer
one day i realized that most of the time i was in some sort of pain,
day and night
one day life had taken away from me so
much of what i had called being alive that i felt i was not truly
- a mind that worked with a body that did not
but that equation sadly left me with much less
than half a life
one day death seemed no longer like a
distant country but somewhere very near to the hell i was living
- it was time to make those last few yards
- it was getting on time to die
john close 22.5.03
On the 26th May we boarded a plane for Zurich where
the Dignitas staff would give him kindness, compassion and the drug
overdose that would finally bring peace to his suffering.