From the very moment of birth,
and even before,
we are accompanied.
We are accompanied
by our families
and usually
by health professionals.
The attachment begins,
so necessary to survive;
and so does detachment,
giving way to a dance
in which both will be more
or less present
throughout our lives.
We are born very vulnerable,
dependent on the surrounding world
and thus our journey begins...
learning with others and from others,
collecting the history and building our own.
The beginning and the end of life
are situations of intense emotions
and of a lot of physical frailty.
Both experiences
are of great transcendence
for the people who share them.
Our society has changed,
we live more years
and the final period lengthens.
We are in an aged society
and with such guidelines,
ways and lifestyles,
that there will increasingly be more people
who are going to find themselves alone
at the end of their lives.
Since the middle of last century,
health professionals
like Elisabeth Kubler- Ross
and Cicely Saunders,
became aware that at the hospitals,
terminal patients had needs
which were not looked after.
The professionals did not
take care of them,
considering that they could
no longer cure them.
When they became interested
in the terminally ill patients,
they found that their situation
could be radically improved,
both in the treatment of the pain
as in addressing their emotional
and spiritual needs.
Since then,
substantial professional knowledge
has been accumulated
in the field of palliative cares.
In this documentary, we will try
to convey this information
as well as experiences
and testimonies of people
who have already been through it,
so those experiences may become
useful for those
who accompany and care.
This documentary
is primarily intended
to the companion.
When cure turns out to be very unlikely,
the priorities change.
Affective and spiritual issues become
the most important.
And "even while it is true that
the life time is shortened,
it can also be widened".
"You can live a lifetime in a few weeks".
The patients often reappraise
what is fundamental
to their existence.
They look forward to reconcile
and to bid farewell.
They need to settle down what
they will be leaving
to the others as a legacy
and to consider, in accordance
with their own convictions,
the meaning of life and transcendence.
The companions are also facing
the main issues of their own lives
and will have the opportunity to close
in the best possible way their relationship
with the patient.
I took my mother down to the emergency ward.
It was November 30th, and I was thinking
that she was having a severe infection
and that after stabilizing her,
they would send her home to me.
Being told that your mother has cancer
is not the worst thing.
For me, the worst was being told
that on top of having that cancer,
no one could do anything,
anything at all for her.
Nothing but to wait for death to come.
Until they give you the diagnosis
there is a lapse of time,
some days of uncertainty,
a time that is really very difficult to bear.
So every day it was like waking up
and to start thinking:
Will it be today? Will it be tomorrow?
And this uncertainty,
it is as if it were corroding you
in the inside.
How can I tell you?
I felt like a shake,
a tremor in my whole body,
you know what I´m saying?
This is it, already.
This is mine.
I have it and this is the end of it.
After the initial disorder,
due to the impact of the news,
when overcoming it,
the moment arrives
to organise ourselves
and to make decisions.
The whole family will be affected
because it is necessary
to assist the sick person
and to replace them in whichever role
they were previously doing.
In the family, if one part moves,
the whole group moves accordingly
in order to compensate that.
Where he wanted to be,
how he wanted to be...
We would talk with him and
with that information,
we would gather, the four siblings,
and then we would decide.
Some changes of roles become necessary
because of the new situation.
For example,
someone who was not in charge
of the house issues,
has to start taking them in charge;
if there are children,
the children will also have to restructure
their life a little bit.
It is important that the patient shares
all the information
and that they can make
their own decisions.
Then indeed I knew it was going to be
a hard impact to say:
"You have cancer".
My concerns were...
Who is going to tell him?
How do we tell him?
Do we tell him the truth,
or we rather don't?
Eventually we agreed a bit
grudgingly to do that,
but afterwards we saw that
it had been the best thing to do.
It was also what he wanted,
and so it was done.
He wanted at all times
to know the truth.
The decisions we made,
I dare to say
that if not a hundred percent,
at least ninety eight percent
were made by my father.
And I think that more and more,
every day both patients and caregivers
are being included
to be able to participate
in these decisions
of rejecting treatment
and preferring palliative approaches
from other stages of the illness.
It was at that moment when he said:
"Look, I do not want any more chemo;
if I can have radiotherapy,
it´s ok.
But not a second time.
I can see by myself that chemo
is not working for me.
I don´t want to hear about
chemo any more".
So it was then when the oncologist said:
"From here, I leave him in your hands".
Through the Living Will they can
record their decisions
for a future moment in which
they will not be able to express
their preferences.
The Advance Directives are what
the patients want to be done
when they cannot decide
for themselves anymore.
I would define the Living Will
in a simple way
as just a way to extend the autonomy
and the capacity to decide
of the sick person,
for when they reach a moment
in which they will
no longer be able to decide.
The Living Will is not
meant for when one
can express things.
Although a person
has made a Living Will
it will always prevail
what they are saying at the time.
One of the decisions to be taken is
whether at the last stage the patient
will live in the hospital or at home.
And of course one thing
that gratified us,
the nearest family,
very much was to respect at all times
what he told us he wanted.
He wanted to die at home.
And his wish was fulfilled.
One can also think:
"But that's not so easy...
What if you can not control the illness
and you have to hospitalise him?"
But then a moment arrives
in which we can not do anything.
Why should he die in a hospital?
And then another phase
began in the summer,
when the oncologist
said that nothing
else could be done.
She told him
she could no longer give him
any more medication,
because the illness
was already advancing
and he had to go with other
palliatives practitioners,
who would accompany him
in the following process.
And that's when the doctor decided
that the best thing to do,
because he will no longer have treatment,
was to refer him to palliative care.
Palliative care
is care designed specifically
to alleviate suffering,
to improve quality of life,
to give comfort
to patients with very advanced
chronic diseases,
or in terminal phase,
and to their families,
friends and surrounding caregivers.
There is not a precise moment.
But the time arrives in which the possibilities
of healing treatment
disappear.
In principle,
it will be the medical staff
who will request the intervention
of a palliative care team.
But this does not mean,
that sometimes,
even though the professional h
as not demanded such services,
if the family knows about it,
they can contact us.
In our case, we are a home care team.
We work seeing the patients,
assisting the patients
primarily in their homes.
The first necessity the family
has about cares
cares is to know
that they can do it.
Many things can be done
and care is what would include
all that what´s done;
that is, giving tools to the family,
giving tools to the patient
so that they feel
that there is a purpose
in being there as they are.
And that the most basic things,
as it could be to heat the soup
in the microwave
in a cup so that he doesn´t feel it
cold when you give it to him;
that is caring.
Teaching the family
to prepare certain meals,
not forcing the patient to eat;
that is caring.
Telling him:
"You are doing it very well";
that is caring.
The sanitary education
in the most basic things,
as it is the hygiene, the nursing,
to learn how to move them in the bed.
We teach them a very basic part
and they usually teach us
many more things,
because who really knows
the patient is the family.
And it happens that they have invented
some ingenious way
to turn him around in the bed
that makes you say:
"God! We should apply
for a patent for this!"
What I´m saying is that I believe
that what they need is the confidence
in the fact that they can do it.
...to know that if he has a fever raise,
what should I do?
If he has to be transported somewhere,
who should I call?
All that information they gave me,
re-assured me a lot
In helping to control the pain,
their relatives have a dual role.
There is the merely technical one
of administering the medication,
with the doses and guidelines
given by the professionals in charge,
and that usually people do quite well.
But there are
other non-pharmacological measures
to be taken
which help the patients to have
good control of the pain.
For example, to care that
the patient is well rested,
that they feel accompanied,
that they can communicate
with their relatives...
The practice of palliative cares
has advanced a lot
and it helps the patients to live
their final stage without pain
and at the same time
in a lucid state of mind.
Even when there is already a cancer,
a terminal illness, anyone,
that doesn't mean the patient
has to suffer pain;
there are enough resources
for the patient not to suffer.
The truth is that the contribution
of the topic of palliatives appeared
to us as fundamental,
the contribution in that moment,
in how he was.
Because he began to deal there
with the whole issue
of dying suffocated.
The standard analgesic for patients
at the end of the life is morphine.
And with morphine,
there is a whole black legend.
Morphine leaves you drowsy,
morphine takes lucidity away,
morphine turns you into an addict...
Well, I think all these things
have to be banished.
Because now we all know t
that morphine used in patients
with severe and intense pain
does not take lucidity away.
Palliative sedation
is only applied
as a last resource when pain
is already un-treatable.
Palliative sedation consists
in administering enough sedative drugs
with the intent to reduce
the patient´s level of consciousness,
enough to ensure comfort
and control of the suffering, of pain,
of breathlessness, of agitation.
...to treat symptoms that we can
not control in another way,
which we call refractory symptoms.
And to be able to guarantee
that people can die without pain,
that they can die without agitation,
that they can die without breathing difficulties.
It's something that terrifies people,
right?
It is also very important
to know that terminal sedation
is not euthanasia,
that terminal sedation
is not to collaborate in assisted suicide.
Terminal sedation is, as we are saying,
a therapeutic tool.
It is a process absolutely legal.
These two circumstances
are the most frequent to indicate (the need of)
palliative sedation.
We are usually at this point
near the end of life
life and we have exhausted
as well other ways
which don't imply a reduction
of the patient's level of consciousness.
Aside from the physical pain,
they may suffer for different reasons,
emotional ones, or of social origin...
Therefore, care is not confined
to alleviate physical pain;
total pain corresponds
with a "total medicine"
which covers all needs.
I understand palliative care
as a person's fundamental right.
Probably if we revise
the Universal Declaration of Human Rights,
they are all there,
all these care needs in the end of life,
in order to preserve the dignity
and the meaning of life.
The patients and their families go aboard
in a process of great instability
and emotional intensity.
Well, sometimes it´s like
a roller coaster all that,
because those are very important
as well as difficult moments.
You feel rage, you feel guilt,
then you think;
"It´s no big deal,
he´ll recover", you keep hope,
and then perhaps ten minutes
later the hope shatters
and we are angry again.
Some stages or steps
that can be distinguished
are fairly common,
although each one lives them
in their own way;
variations can appear
in the order,
the duration or even the existence
of some steps.
The situation
of caring for a patient
with advanced disease
is, for the family,
for the caregiver,
a situation of physical
and emotional stress.
Upon receiving the news,
it is usual to begin by denying it,
saying for instance:
"There must be some mistake".
It is important to find a way
to communicate it
to the patient with frankness,
but tactfully.
Since the beginning
of the summer,
the whole process lasted two months.
At first he would not accept
the situation.
It was like the doctor was saying:
"This is it"... and he: "No".
We can understand this is a notice
which is difficult to assume
and denial does the function
of a shock absorber,
allowing distance until the patient
is psychologically prepared to accept
the new situation.
The patient is entitled
to the information,
but is also entitled to not knowing,
or to acknowledge according
to a rhythm that is personal.
The right to know does not entail
an obligation to know.
Another type of denial
is one which occurs
in the patient's environment
to simulate that death
will not happen.
This is called
"the conspiracy of silence".
Many times,
the family members,
in an effort to protect,
don't want to talk
to the patient about
the bad prognosis
or the situation
of the end of life.
And this puts the patient
into an isolation cage,
which often conditions
a worse symptomatic control.
The fact that the patient
can speak openly about things,
facilitates
a lot the control
of symptoms in general
and, in particular,
the control of pain.
I know that in many occasions,
when there are
serious health problems
or at the end of life,
you the caregivers
try to be so careful
with the sick persons,
with the patients,
that at the end you say:
"We better don't tell them this
so they are not going
to be unsettled".
What I would advise to you,
is that with all freedom,
you should be
particularly attentive
to their gestures,
to the signs they send
and from there,
it would be about giving back
in the form of questions,
so they can feel
that are being heard,
the relevance,
the centrality
that all that has.
To accept illness and death
is not the same as resignation.
Resignation is passive
and paralyses
in front of the suffering.
But the acceptance of the fact
that death is unavoidable
opens the way to change things.
And also,
I tell to all those
who are in such case,
in my circumstances,
That there´s nothing
to worry about.
And even if one wants
to think otherwise,
you will not have anything else,
that´s the way things are.
So, there´s no use
in going over it
again and again.
Initially,
the patient may react with anger.
Frequently the question arises:
"Why me?"
Then, in that first moment,
he didn't accept it.
And some days
of non acceptance came by,
and anger, later.
He started to get very angry.
Anger can go against oneself,
against medical personnel,
against friends or companions,
against God...
The most normal thing
is that they project the rage
against the people
who love them most
and who more care of them.
Impatience, frustration,
irritability;
this is what the relative is putting
on with day by day.
So it may be that
the family becomes angry
with the patient
and this also creates an ambivalence
that is a bit difficult.
How will I possibly be angry
with someone who is going to die?
But of course,
the person is irritated
and it is difficult
to be able to separate
that this person who speaks,
this is not him who´s speaking,
but rather the illness.
Setting aside some moments,
because there were also some of those,
of bad temper,
in which he would answer me
back in a bad way and such.
But I did understand him,
he was having enough;
it was a fight against that which he had.
So I did not feel that
he was coming against me,
not at any moment.
It was a way to blow off steam,
to vent.
A way of saying:
"But why has this happened to me?
Why am I locked up here?
Why am I suffering this?"
It is just that,
they are blowing off steam;
it´s a way to release,
a way to release all the anguish that
the patient is carrying.
There´s no need to revise the cares,
there´s no need
to feel bad or to think
that one is not doing it well.
But he was aware
so he would back down
and apologise constantly.
"I did not want (to say that),
but it´s that I'm nervous sometimes,
is that I can´t accept it,
is that I´m going to die
and I don´t want to" he would say.
Then, that´s what
I would have wanted for me
and what I wanted for me is
what I tried to give him.
And there can also come out
emotions or feelings,
which sometimes make you feel guilty,
you see?
When you see the person who
is suffering a lot,
you may want him to die
so he will not suffer anymore.
And then later
you can feel bad about that.
It is actually quite fair
to wish for that person
not to suffer,
but this kind of feelings
maybe are not quite socially accepted
and therefore
they will generate some guilt.
One of the most inappropriate
or less practical feelings,
to say it somehow,
is the feeling of guilt.
And we will only be able
to give quality cares
if we are well ourselves.
Negotiation:
an internal dialogue
takes place,
as trying to negotiate
their situation.
This is usually related
with pending matters and farewells.
But once the wedding
was over he said:
"I have already kept up,
so from now on,
whatever comes to me..."
He even told me that:
"Whatever comes to me,
I don´t care any more.
I don't already care,
if I have to die I will die,
if this it is my end
I no longer care about it.
I have already kept up
with my daughter,
with all of you,
I did not want to spoil
this beautiful day
for my daughter."
When accepting that
the situation is unavoidable,
a state of sort
of depression comes up
which often can not be avoided.
If the pain is allowed
to be expressed,
that helps for the final acceptance.
In this sense,
there are not useful at all
any forced positive attitudes
or pretending with the intention
to cheer up.
Many times few words are needed,
but what can always help
is to be there, available.
We have spoken all these things.
We talked about our fears,
about all our concerns.
We have all opened our hearts...
It is truly important
to open the hearts...
What I mean is,
there are issues
that sometimes overwhelm us,
that seem so important,
and at the end are
not important at all.
...this need to talk,
to be heard without judgment
what he was saying.
That was also
a very strong need
I saw in him.
The detachment is the rest at the
end of the journey.
Moreover,
when the time will arrive...
I think I'll even be happy
when the time comes.
Because I know
that I will rest as well.
The patient reduces
his activity
to the minimum,
hardly speaks and loses interest
for what surrounds him
He wants to be alone
or with much reduced company.
This happens because
he is preparing to leave;
and the companions may suffer
when feeling ignored
if they don´t understand
this stage of detachment.
He needs to go into himself
and he needs
to start caring less
for those he has around.
That sometimes makes
the caregivers feel bad.
Makes them feel that
they are not as useful,
or makes them feel that
the person they love so much
no longer needs them as much.
It is necessary to let them go.
And for letting them go
it is also necessary
to allow them this detachment
To experience that their loved ones
don't accept their death,
can be for the patients
a cause for distress.
It is important to
"give them permission" to leave.
What it is necessary
to do is to let go
of the other person.
And then, to let go calmly as well,
is important for those who remain.
And he told us many times:
"I don't want you to cry for me,
because you will make me suffer a lot,
when I am up there, if you cry for me.
When the moment arrives I´ll be
already prepared."
And, well, as you love that person
and you love him so much,
you get to tell him that
it´s OK to go away, to rest,
that we are there with him
and that we will always love him.
In fact,
when we were all there with him,
we even gave him
permission to leave.
We told him he could go.
I said:
"Dad, you can go,
is all done.
We are all well and you did
very well indeed."
Well, I would like to comment
a little bit,
this legacy which left us
the wife of a patient
we were assisting in their home.
He was a very young patient,
thirty seven years old,
he was diagnosed with liver cancer
and his wife was accompanying him
at all times.
From the initial diagnosis
to the end.
She wanted to capture,
with this drawing...
the purple line is the line
of the disease,
from diagnosis to death
and all these figures
that appear below
below the line of the disease,
of death,
those are all
the health professionals
who have accompanied the patient
in the hospital,
the teams of the psychologists,
the surgeons.
As soon as they entered
the final phase of the illness,
the palliative care team.
Well, he finally decided
to go to a hospital´s
palliative care unit to die,
and they are also reflected
at the end of this disease,
right?
This is the patient, Carlos; he
was accompanying Laura
to walk along this disease,
this arrival to the goal
that was the end of his life, you see?
With this drawing
she wanted to thank us
for all the support
she had of our team
and the other professionals
who had accompanied her
in this long process.
"For all members of ESAD,
you make easy the difficult."
Which is one of our mottos, right?
And after those days of living
that agony with Carlos,
of those so strong pains,
and after those days,
which were very grey
and very dark for us,
it was the arrival
of the palliative cares team
and suddenly,
I had the feeling that
the sun had arrived to the house,
the light had arrived.
The palliative care teams
have served me wonderfully,
incredibly,
because they have been as...
they are my therapeutic angels,
really.
...because every time that
the day arrived,
it was a happy day for us.
Moreover, there was a long time,
fifteen days in which
they would not come
"How is it that you will not come
in a fortnight?
It cannot be,
we need you every week,
you give us an injection of life,
an injection of hope..."
It has to do with a feeling
that you share blood and skin
with other beings who shelter you
when it is cold,
who collect your tears in a jar
to transform them into
a healing potion.
So thank you for enlightening us
with a ray of hope,
for making us know
that a friendly arm
rests in our shoulders
to accompany us along the way,
on the right track of
a different and better world.
So thank you very much.
Man, now they do help me
with tenderness!
You can see how much they love me:
I do not miss anything on the table.
There´s nothing missing
What did I need?
I think I needed all what
that people were giving me.
They gave me everything.
I needed internal tools
which they gave me,
I needed encouragement
which they gave me,
I needed venting
and they would came to see me
and I could talk
and pour my heart out with them.
Sometimes I was crying,
sometimes laughing,
sometimes I would share
beautiful experiences...
They are living
a situation similar to yours
with another relative of them
who is in the same situation as yours,
right?
Then,
a sort of complicity,
a bond of friendship
is created there.
But it´s a bond of friendship
which includes support,
which includes them
giving you encouragement,
which includes that
they will care about your relative.
...stories that are rediscovered,
stories to which you find
again a meaning.
The encounters, right?
Those are stories of encounters.
When life turns out difficult,
you meet again with the truth
of those you have around, isn´t it?
And why do we rediscover each other?
Because there were many moments
of being together,
of speaking,
of talking just us,
of telling us things that maybe
we had not said before.
When a carer tells the patient:
I would have chosen you again,
even knowing all what
we were going to go through together.
Even knowing that,
I would still choose
to live this part
of my life with you.
He felt me very close to him;
He felt my affection; he felt...
he felt it.
He would tell me:
"I didn't know
that you loved me so much."
Every moment in
which my son comes by,
or my daughter-in-law,
and I am in bed.
And they don't know if
I am sleeping or I am awake
and he hugs me
and he gives me a kiss.
He gives me a kiss...
Gosh!..., Oh, my!....
How much is that worth?
Each person is different.
So then,
there is also an adaptation
to a knowledge
of that person´s needs.
But you can always ask.
Is there anything you think
I can help you with?
Just to accompany,
being there, available.
There may be a change and,
sometimes, all that is needed
is for the other person
to know that you're there.
I mean it´s not about
saying anything,
it´s about listening.
He needed to be alone and to spent
long hours just with himself,
but it didn't bother him
that I was there.
That is, if I would come closer
and we would just held hands
and kept silent,
he appreciated that very much.
And more than just a sentence,
I reminded him that,
to see the sun every morning,
and he would say:
"Another day that I see the sun,
another day has dawned".
It is what I was telling you before,
about the light being so important.
The companion has an opportunity
to reconcile
and to close as well the stage lived
next to the patient.
So, I would like indeed
to say that it is very important
if you have the possibility to bid
farewell to a person
who you know is going to die,
if you pass through this situation,
try to say goodbye to him
and try to communicate with him
and with the rest of the family.
I think it´s important
because later on,
when that person is missing,
you´ll bear it much better.
The companion may attend to the care
of his or her
own internal condition
for this helps them to give
the best of themselves.
So those tools have been
very helpful for me.
All that work with the attention,
with reconciliation.
And at the end,
all the work with ceremonies,
with askings.
,,,to learn to remove drama
off the situations.
To learn how to laugh
at a given moment,
even at the adversity.
One characteristic feature he had,
and we all in the family have,
is the sense of humour.
And I find that very important
in the process we have lived.
It has been very important.
To those who are in my situation?
To get up in the morning,
to laugh a lot,
to tell jokes and to forget
about what people might say.
And then it´s all over.
And the day I die,
that they bury me so
that it doesn't stink.
The person is alive
and needs people around them
to treat them as someone alive,
not as someone who is going to die.
...and then I go
to the adult education centre,
at three in the afternoon.
I speak with one, talk to another.
Today, as every Friday,
when we leave the school
we go to the bar,
to our second home.
And we have our coffee.
We talk, we laugh, all that.
And that´s how I spend the time.
...as pleasant as possible,
in the sense
of not forcing him to eat.
If he wanted to eat,
he would eat;
if not,
that´s OK,
too.
At the end it was very difficult
for him to eat, to feed.
And I would spend the days
in the kitchen
trying to prepare
different dishes
to see which one could be
right for him...
Instead of being more attentive
to other things
he was saying to me,
or being more aware that he was tired,
he was exhausted,
he couldn´t take it anymore,
I was wasting the time
in other stories.
This time, really,
of conviviality, of sharing.
This is a point,
I would say,
that helps.
It is an opportunity
for internal growth,
for learning and for gaining
in personal coherence.
But when the illness stops us,
suddenly many questions
begin to arise.
Questions that have to do
with something as simple as:
Why does this happen to me?
Was this the right time?
Because apparently it was at an age
that maybe it did not correspond
to be stopped by the disease
or to be facing death.
Or one wonders,
if one has made a fairly good life,
trying to do good around.
And you feel life
is treating you unfairly
with these diseases.
Well, we are at a stage
where questions about meaning,
about values,
also questions as to
whether I am at peace
in my relationship with others,
in my relationship with myself,
or my relationship with
a transcendent being.
Anyone, regardless
of their beliefs or atheism,
may experience
the necessity to reconcile
or to give meaning to their lives.
I would like to clarify the fact
that the spiritual dimension
does not always have
a religious content.
Moreover, there are often people
who have a spiritual experience
without having
an approach to religion.
We all have
a spiritual view of things,
although we do not always acknowledge them,
or we don´t give them names,
because those dimensions that we,
all the human beings have,
may appear,
and we usually walk with them
without being conscious of them,
they are like the air,
which we don´t see, either,
but we know that it´s
there and helps us to live.
Prejudice or shyness
when talking about these issues
can block up something
that is essential to address.
Sometimes the problem
is in the caregiver himself,
who does not dare
to talk about that,
because he knows that
it means entering in a scenario
of deep communication and,
sometimes,
of painful communication,
because it has to do
with saying goodbye,
it has to do with the end, isn´t it?
It is not about making a therapy
or giving spiritual direction.
Well, it does not help me, you know?
When people want
to impose their beliefs,
their way of seeing life.
For example, religion.
I am agnostic, for instance,
and I have a lot of respect
for those who have a religion.
Much respect, to tell the truth,
but I 'm not religious at all.
I prefer to look at death,
outside of what religion is.
It is about accompanying
the patients,
while they find by themselves
their own topics and plots.
Then, there, he perceived the sun;
he closed his eyes and said:
"I'm on the beach of heaven,
under the sun".
That will help, mainly,
to avoid blocking anything.
This happens to us in the emotional issue
and it happens
as well in the spiritual issue.
That is to say,
the importance in the accompaniment
of enabling the person to put words
to all what they are living.
To explore would be the key word
of accompanying.
Because exploration allows the doubts,
the restlessness, the resources,
the capacities, the fears,
allows all that to come out.
I believe that it is
the most fundamental
way to accompany.
Victoria died and you can imagine,
my pain was terrible, right?
I was emotionally shattered
because I would not stop crying,
but then something amazing happened
and it was that experience,
the internal register
I was talking about before,
that register of people cuddling me.
I felt cuddled, protected,
but I felt that as if coming
from the inside;
something was accompanying me.
I don´t know what... life.
It was a sense of meaning,
I felt that life was with me
and that life continued with us
and that life was supporting me
at that time
more than at any other time
in my life
or along this whole process.
Many people believe they can not help
their loved ones,
because they don´t know what to do,
or what to say,
because their fears show up
and they think they have
no contribution to make.
But the single fact of listening
and accompanying is already a big help.
When people feel,
and when we feel heard, accepted,
in those processes it is as
if the spirit is liberated,
as if the soul is liberated.
And that is an authentic wonder.
That is a gift.
On the other hand,
this is not just about
the companion helping out.
Proud. Mainly I feel proud
of this last time,
that I´d given them the confidence
for them to stand this more calmly;
for them no to have that fear of death.
I know that for them,
mainly for my children,
it is very tough,
because one is fifteen
and the other twenty-one years old.
But I know they will be strong
and they will know how to face that,
and they will know how
to be at my side
until the last minute;
and me, I will thank them
for that very,
very much.
It was amazing to see him,
after the whole process,
and after he already died.
And he remained with a peace..
he stayed in peace,
he kept a face of happiness,
he had a happy face.
He had a smile of peace and joy
that made us all happy
of having been able to carry out
among all what he had wanted...
The proximity of the end,
usually involves
a reconstruction of one's life;
there is an evaluation
of what has been done,
of what has not been done.
Finding the meaning,
feeling that one´s life
was worth of living,
helps to re-evaluate one´s
own biography
relying on it´s
most positive issues.
...to be able to relive, somehow,
moments which have been happy.
To be able to thank anyone,
or no one,
this time spent together.
Recovering the stories
of all those people
who are around us
and which are truly worth
of listening,
not just for the benefit
of the other person,
because you're helping them...
so they can organise
their memories
and reconcile with many things,
but for yourself as well...
because they are passing on
to you a story of life,
that surely is going to help you
in many occasions.
In fact this is one
of the most satisfactory
experiences I´ve met.
A part of that other person
remains with you.
The legacy is revised as well;
what is left to others
when leaving.
What one has done can remain
in the family,
but it can also be
an intellectual or artistic legacy,
one of social advance or
of a professional kind, etc...
For instance, recently a person,
who had worked a lot in research,
was telling me.
Knowing that he had made
a little contribution to science
implied that some part of him
was going to stay
when he was no longer here.
He was, somehow,
transcending his own experience
beyond himself.
This is also a key dimension.
When you are caregivers you can tell
the person who is sick:
"Hey, even when you're not here,
, you'll still be here for us
in other ways,
, you have been a treasure for us,
you have been a gift".
One helpful resource can be
to elaborate a material,
an album, a written testament,
a video or a voice recording,
that is to say,
a physical object
where to support the memories.
He even made a video
for the farewell.
He put there his pictures,
and pictures of us,
and put his songs there too.
And we were at the funeral home
and we were with him,
because I knew that Carlos,
he was there with us,
he was in his work which he had made.
He didn't want tears to be there...
The evocation and expression
can also be supported
in materials as photos, music...
This photograph is one
of the major supports
for my father,
for I put my intention
in him leaning on
the positive things
and on the things he had built,
and on what his purpose was.
He had a clear purpose
which was caring.
He cared of plants,
he cared of animals,
cared of family,
he cared of children,
and he accomplished all that.
So I said we should all support on
the positive things.
Because we had never thanked
my father
for everything he had done for us
since my mother died.
So we wrote this text you can see,
which says:
"Thanks for your effort,
for being a fighter,
for being a good model for us all,
for getting ahead and taking care
of this family,
thanks for all this and so much more."
The need to close
the life cycle is experienced.
Also reconciliation with other people
especially people one loves,
but mainly with life...
The things one has done
or what has been left undone,
because sometimes...
you feel like shifting priorities
in those moments
and you care more about
more fundamental things.
Then there are times when one feels
that one didn´t ...
that things one should have done
had not been done, you see?
But also to value what has been done.
For the companion or the loved ones
who accompany that sick person
it is also important
to say goodbye properly,
and to fix things and to reconcile...
Why? ...
Because that life ends
but the relationship with
that person will continue;
then also that helps
the grieving process to be better.
The only thing which is central,
which is key,
which is at the very core
in people´s life,
is to feel loved and to love.
It is to be able to say:
"It has been worth for me being with you
and walking with you,
making a journey together", isn't?
The proximity of death
and progressive detachment from life
life can put the patient under conditions
of deepening their experience
of communication with the others,
as well as on the meaning of life
and the possibility of transcendence.
I think that he was preparing himself
for that moment,
to face that moment.
And that´s why
I think that that silence,
quite unlike him,
he would not stop talking,
that silence had to do with that,
with accepting that he was going,
that he was leaving.
Because obviously,
when there's a moment like that,
in which you are expecting your end,
you bring up many things.
And he took out a lot from inside.
But very, very rewarding. A lot.
Death doesn't have to be
necessarily terrifying or sad.
Transforming the conditions,
many people can get to accept it
in deep peace.
Well, along these two years,
it has been an evolution,
which I don´t believe it myself,
of course.
Because at first it was the shock,
the impact of knowing
that you are diagnosed with such
a harsh illness.
And after that it has been,
in truth,
in less than a year,
passing to admit
this disease naturally.
With no nerves,
no fear of what may come,
nothing.
On the contrary.
Yes.
He was completely calm.
It was a completely light death.
He made no gestures
or anything like that.
In a good way. Very calm.
Grabbing him,
we were grabbing him physically.
I put a hand in his chest
and grabbed one
of his hands.
My brother grabbed
his other hand.
We were all...
well... accompanying him.
And my sister said:
"Dad, if you had known it
was so easy,
you would have surely left sooner".
Mostly, what I see and
what I feel of that moment
is that he actually died
as he wanted to.
And he died peacefully.
But dying peacefully is also something
that was made very easy for him
by the team,
by being there,
by knowing how
to act at that moment.
And he passed from life
to death almost in nothing,
in a sigh.
He closed his eyes
and that´s how it was.
That´s how it happened.
Accompanying him at the end
of his life,
was not just accompanying him
in these last months,
three in my case,
but those last two years,
all that time, you see?
And I am really thankful
to have had that opportunity,
for having allowed myself
to do the whole process
in those two years.
It is the confirmation by experience
that there is something else
than what we see with these eyes,
than what I see with my own eyes,
and what I feel with this...
Perhaps transcendence
and the experience of "us".
I do not think this could have gone
ahead without the support,
the connection, the bonding
between many people
who have been accompanying me.
And certainly I wouldn´t change
that for anything.
What's more, if I had to pass
through it again,
I imagine I would do that again.
...feeling well with myself.
Saying: "It´s
that I've done everything".
That peace,
that tranquility of saying:
"It´s that I have done everything".
I consider myself strong
but I didn't think
that I would be able to be so strong.
But when something like
this happens to you,
you never know up to
where you will get,
how far you can arrive, you know?
I came face to face
with life.
I came face to face
with life and I said:
"This is what I´ve been dealt
to live with; s
o let´s do it".
Those have been very important moments
in my life.
Being present in the moment
in which anything,
just holding his hand,
or just going for a walk
in the hospital´s corridor,
or whatever, was a very intense way
of living things.
...the generosity of the people
who have allowed me to accompany them
in these moments.
I think that it is really
an act of generosity
to allow me to participate
in such important moment of the families.
With each person who dies
that I have treated,
of course there's a part of myself
that goes with that person.
There's a part of me that may go,
right?
But, you know, what you have left
in that moment,
having been able to help that person;
that is so great that I...
... I don't know,
I used to think that there could not
be many people in your heart,
you see? I thought you could not love
a lot of people.
And the truth
is that the more you love,
more people fit into your heart.
I decided, in its moment,
to carry on doing this.
I think it gives a lot
of meaning to my life.
I think that it confronts me less
with my own death,
although I think on my death.
Being present many times
at the death of patients,
that is a school of life,
it is not a school of death.
It is a school of life.
Because I do not deal with bodies,
I am dealing with living people.
When you continuously see people dying
and you see how people say goodbye,
how they treasure the details,
the moments,
the smiles.
We do see all that in the patients,
right?
Then, we start appreciating the value,
I am speaking for myself,
the meaning of things
and the relevance that some things have
in my personal life.
And the value of life,
and the value of loving,
that is what we learn here,
and it is truly priceless.
People say: "But, what a horror!
How can you work in this?
How you can you be doing this
for fifteen years and be happy,
and still go happy to work?
If this is horrible!
All day with death,
all day with severe illness,
all day with suffering..."
And here,
I would like to say indeed,
that when you switch the focus,
when you learn how not to see
the patient
as a person you have to cure,
but as a person you have to help,
to accompany at the end of life,
and you see the usefulness
of you being there,
being there as a doctor
and as a person as well,
accompanying them,
that is so rewarding,
that it really helps you in making
your day-to-day much more rewarding
than many other medical specialties.
And that is what I´ve tried to do.
To live my life as best as possible,
to have a family.
To have a family that loves me
and which I love.
And I am more that satisfied
in life with that.
Satisfied, very satisfied.
So to all of you who are
in my circumstances,
I give you a hug from here
and I hope to receive yours too.
What I mainly take with me
are the smiles.
Amid the sadness, amid the sorrow
and amid the emotional pain,
there is that point at which
the connection appears
and the smile appears.
The serene smile of patients
in many moments,
even though it seems unbelievable.
The most beautiful love declarations,
I've seen them in couples who are
bidding farewell,
you know?
Couples who are caring
for each other
in the last phase of illness.