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.