there’s an elephant in the room in fact
there’s an elephant in the room in every
house in the country she’s really fat
and lonely because people are afraid of
her and think that she doesn’t exist and
pretend that she doesn’t exist
her name is end-of-life Ellie and I’m
talking about her here today because I
wanted to bring in the elephant from the
room and it’s a lot easier to talk about
this subject when you do that I’m a very
practical person I like to get things
done I like to have lists and tick
things off and I like to know what is
happening and that has served me very
well on the whole up until the time that
something happened that I was completely
unprepared for six years ago phone rang
it was my husband its stomach cancer I
was really shocked I hadn’t thought for
one minute that it would be anything
worse than a stomach ulcer we decided
that we needed to tell family and I rang
my brother towards the end of the
conversation he said well think of it
this way at least the food bills will go
down which was a her introduction to the
black humour that surrounds topics that
we are uncomfortable with which is
pretty amazing because statistics show
that 100% of us are going to die but all
of us here every one of us me included I
am passionate now passion
about educating people about to become
more at ease with dying with death with
grief I’m passionate to help people stop
crossing to the other side of the road
when they see a bereaved person that
they know because they feel awkward and
they don’t know what to say it still
does happen and I’m passionate about
people completing end-of-life plans just
like a birth plan
and for that to become the norm but I
didn’t always feel like this six years
ago with that diagnosis for Phillip he
was recommended chemo an operation and
more chemo you know when something like
that happens you are you carry on living
you carry on living because that you are
alive where you are alive right up until
the moment that you’re not right up
until the moment he used it as a wake-up
call he listened to his heart’s desire
and he started writing again for which I
was really grateful because he was a
he took care of a few relationships in
his life from his past that where he had
fallen out with people and he mended
them and he answered some very important
the operation didn’t work they didn’t
get all the cancer out and so we were
faced with the prospect of him dying
perhaps sooner than we had thought one
day I received an email from a friend
Barbara in Los Angeles and in it was a
long list of questions that she said
please make sure that Phillip answers
these before he dies so one Saturday
morning I sat up in bed with him and a
laptop and I asked him the questions and
he gave me his answers
no not easy questions things like what
do you want your body to be dressed in
and do you have any precious things that
you would like to give to people and
even more practical things like tell me
how the car works and the burglar alarm
system very practical he gave me his
answers and you know what that morning
turned out to be a really wonderful
morning it was so loving and we were so
intimate yes it was poignant but it was
full of tenderness and alpha up later on
we referred to it as our last project
together he went into the hospital now
we didn’t know that when he went to the
hospital he was never going to come out
again just like we didn’t know that this
was his last year when it was you don’t
know when it’s your last year you don’t
know until it’s finished until it’s over
and you’re looking back so he went to
hospital and one of the things that
happened there was that he told me he
gave me a message about when he was
going to die I had friends staying with
me and one of us was we were taking it
in turns to stay with him in his room
overnight so he was never alone and one
night I received the text in the middle
of the night saying please come up
Philip is distressed so I shot up we
managed to calm him down and he went
back to sleep and then she told me he
said he wanted to watch a television
program now this was really odd
especially in the middle of the night
but he had not wanted to watch
television the whole time he was in the
hospital 6 weeks
she said he wanted to watch countdown
his favorite program now I knew because
I had studied both professionally and
personally done a lot of reading about
dying in
and grief that people quite often send a
message to their loved ones when they’re
near to the end and I knew immediately
that he was telling me he was counting
down and actually that felt really good
that felt really good
the next day I was sitting with him with
my friends there as well by the bed he
was doing that kind of ratalie type of
breathing which is so unpleasant to
listen to and then it shifted and it
shifted to a breath I’m in a long gap
and another breath and then there were
no more breaths you don’t know when the
last breath is until after it’s happened
somewhere in that long gap I saw him his
face changed color little bit but more
to the point I had to stop talking to
him lying on the bed there I had to turn
around and look up at the ceiling and
carry on talking up there as if he were
up there because he was not on the bed
was propelled into grief on a stormy sea
batted around all over the place
starting with shock and horror and
disbelief even though I knew he was
gonna die but it also included sadness
tears rage anger worry anxiety and even
moments of joy that really muddled me up
I had no idea what was going on at all
whereas before when cancer had come
knocking at the door with fear as its
companion now grief was knocking at the
door with all these emotions but there
was one thing that I did know I knew
that it was really important that I
the door we had tried to close the door
on cancer but this time I don’t know why
but I knew I had to open the door throw
up the blinds open the windows and open
the back door at the same time because
then the feelings could come be around
for a bit and then they could leave
one morning about four weeks after
Philip died I woke up and the thought
was in my head which was if that was an
empty bag lying on the bed what is this
a filled bag they’re all filled bags
what if it filled with and that became a
mission for me I had to find out was
really important at the same time as on
being on that mission I was being
humbled humbled by grief very humbled
because I discovered that I had all
kinds of judgments about it I judged how
long it should take I judge flop it it
was I should be feeling and I judged
when those feelings were around it
didn’t stop you feeling the feelings
because I because of the open door
policy but I had the judgments as well
and what I discovered in this journey is
that grief has many forms and they’re
all okay and have another little story
that I want to share with you that helps
to illustrate this about three months
after Philip died we had another
terrible family tragedy his eldest
granddaughter
Becky aged just 16 also died of cancer
I met with her parents and siblings down
in a cottage in the southwest of
Scotland we were going to scatter
Philips ashes and some of Becky’s ashes
in a ritual honoring of them both at a
place where the families had loved to
meet and have wonderful holidays one
sunny morning during that week I was out
walking on the beach with Becky’s sister
Rita aged 9 we were looking for white
shells amongst the black rocks but I
wanted to know how she felt about her
sister dying so I asked her Sita what do
you think happens when someone dies and
she fed without stopping looking for the
shells she said oh they go up to a
floating garden in heaven Grandpa
Phillips up there with his boat he’s
living there in a mansion with a room
all to herself Michael Jackson’s there
it was so beautiful I felt so touched
with it
and tears came to my eyes and you know
this little nine year old girl had found
a way to describe a terrible thing that
had happened in her family about three
years after Philip died if I published a
book called gifted by grief and I was
able to call it that simply because by
this time I had felt gifted I certainly
hadn’t felt like that of the type but
over the years I began to notice that
there were very many gifts that I was
receiving and one of them of course is
being able to stand here tonight it is
ironic if he hadn’t died I wouldn’t be
here tonight but but I am grateful to be
able to speak like this so although I’ve
said some of the things that contribute
towards a good deaths here are three
that are really important that I’ve
learned the first is
live here now I know that sounds really
obvious but it’s really important
because we remember we don’t know when
it’s our last year we don’t know when
it’s our last breath we haven’t got a
clue we all pretend to play the game
that we know are we doing it now because
I’m also a very practical person I like
to know what how do you do it how do you
live here now so what I did was I
filtered everything through a little
sentence and the sentences am i enjoying
myself really simple am i enjoying
myself if the answer was no I just
stopped what I was doing and I still do
that now it does make for a few awkward
situations sometimes but I now know that
life is too short to bother about that
or to be worried about it the second
thing is discover who you are discover
what this feeling is because if there’s
a body that gets left behind that isn’t
who you are then it means that you’re
not your emotions you’re not your
thoughts you’re not your feelings your
so what are you so if you ask that
question and dig deep then it’s going to
be a lot easier to cope with the idea
but one day this body is going to go the
third thing answer the questions
remember the questions I asked Philip
there’s lots of them there’s lots that
you can do to prepare well now for a
good end of life and I’d like to
acknowledge the elephant in the room
again and I’d like to invite you this
week maybe to go and acknowledge the
elephant in the room in your house and
maybe have a conversation with her maybe
have a conversation with one of your
friends or one of your family about
dying about death or about grief and
become much more at ease with it thank
you [Applause]