Part of what we lived through: Palliative Stories – the EAPC’s occasional series from the perspective of patients and family carers

Petra Mahler from Germany recalls the tragic sequence of events during the illness of her husband and their 15-year-old son who died within three weeks of each other. 

Petra and her husband (picture © Petra Mahler).

Petra and her husband (picture © Petra Mahler).

Our son died three years ago
from glioblastoma
after one year of treatment
at home … without palliative  care.

I had requested their help when
my husband was diagnosed
with lung cancer stage 4,
five months before our son’s death.

My husband died three weeks after our son
in January 2012.

We did not have ‘the talk’
about the end being near.

My husband got his next chemo
right after our son’s death.

It was obvious,
that there was nothing to win.
Everyone could see that.

I did not …
back then …
was in shock …
just functioning …
no time to think …

So,
again,
not even then,
there was no way
to get palliative care …

no talking about the end …
endless extreme pain …
and complications.

I brought my husband to the hospital
the day before he died
because our family doctor said
that he might need some blood.

In the hospital
the doctor saw on my husband’s blood work,
that he had liver and kidney failure –
he did not tell me.
(I was told after his death,
when I went back for a talk).

So I gave permission for the gastro surgery,
that they offered to do,
to “eventually stop a small bleeding
and gain some more time”.

My husband was given five packs of blood
and was able to talk normally,
waiting for his surgery.

The kids came to see their dad,
but were sent back home
because the surgery
had to be done
and that could not wait.

Afterwards,
he was transferred
from intensive care to a single room
because there was nothing more,
they could do …

I was with him from midnight
until seven in the morning,
he was fighting so hard to breathe …
it was shocking …
like a nightmare.

The nurse was nice, but very busy …

The university hospital
has its own palliative care department,
but no doctor came
to ease my husband’s pain
and his struggle to breathe.

Palliative care was still new,
probably not everyone knew about it.

The doctors all came at 7 am,
to check on their patients …
then,
told the nurse to bring the morphine …

When he finally got it,
it was almost ‘over’ anyway …
he was calm then,
after a long night of suffering.

He did not get the palliative support.
I had asked for it,
when we found out about my husband’s cancer
and that it was stage 4 …

I was so scared…
he was almost always in extreme pain …

For four months
there were two of our family sick with cancer
and getting outpatient treatment.

My husband’s doctor never said,
that it was time to stop the treatment
and think about dying.

No one to talked to our two other kids …
it just happened the way it did …

their father was dead…

they did not even have one private minute
alone with him
when he was dead …

it was at the hospital,
I did not think of that,
and no one else did …

All of that was very, very sad
and traumatic,
it happened three weeks after the loss
of our youngest child.

This picture of my husband and son was taken in October 2011. Both died in January 2012; first our child, 15 years old, then three weeks later my husband at the age of 53. (Picture: © Petra Mahler).

This picture of my husband and son was taken in October 2011. Both died in January 2012; first our child, 15 years old, then three weeks later my husband at the age of 53. (Picture: © Petra Mahler).

Our son was diagnosed
at the age of 14.

After one year,
at the very end,
his last five weeks,
he was dying slowly …
on the sofa …
in our living room …

Without palliative care.

The palliative care team in our city
did not have the right
to help children
at that time.

There is a children’s home care hospice,
but the hospital does not cooperate with them.
I do not understand why that is.
The children’s hospital was more than full,
some of their patients did not even have a room,
they had to be in the hallway.

We got  a special nurse for children,
he came about two times a week at night …
so,
on those nights,
I could sleep more than two hours.
That was my rhythm for a whole year !

We also had one trained helper
from a hospice.
She came, I think, twice a week,
for an hour or two …
to spend time with our son,
who, in those last five weeks
could not move his muscles anymore
and could not talk …

the only way to communicate was
with one of his eyelids.

In the end,
he died,
when the last of his breathing muscles
stopped to function …

That is a very slow
and awful way of dying.

It still breaks my heart to remember,
what they both had to go through …
I have dreams
of being in such situations
and not being able to help or to ease the pain.

I am a nurse.
My pension insurance sent me for rehabilitation,
to get “fixed”
and then, they said,
I should be able to go back to work.
Luckily my therapist there said,
that would be the worst thing to do.

I fought with social services
for a disability allowance
and after a long time of writing back and forth
it was finally approved
until the end of 2016.

I have two other grown-up children
no one was there
to talk to them …
we just tried to deal with it.

Friends tried to be helpful,
but that is very difficult in such a situation …
people have to be skilled
to give support in such a scenario …

Thre years later,
we still do not talk about what happened …
I guess it is too much to deal with …

I have a psychologist
and a therapist
qualified in trauma and grief.
These are hard to find and usually
have to be paid for privately.

I am trying to live with what I saw,
but am still far from ‘normal’.

I am sorry for this being so long and so sad – it was way too much for a heart to take but it is part of what we lived through. Thank you for listening.

Links

  • Read more ‘Palliative Stories’ on the EAPC blog
    Look out in December for the next story in this series. If you missed the previous posts in this series, please click here. If you have a patient, or a family member or friend, who would like to contribute to the series please contact the editor.
  • End of Life Care in Germany – New three-part report, just released by The Bertelsmann Stiftung, contains much data, including information on how many patients receive chemotherapy in the last month of life. Available to download.

A message from the EAPC
We would like to thank everyone who has kindly contributed to this series of ‘Palliative Stories’. In publishing patients’ and families’ stories we are aware that content may sometimes focus only on one side of the story but we hope that the stories will help us all to better understand people’s palliative and end-of-life care experiences. Unfortunately, we are not able to give advice or comment on individual cases but we share in the distress that our contributors have experienced.

This entry was posted in Palliative Stories, PATIENT & FAMILY CARE and tagged . Bookmark the permalink.

3 Responses to Part of what we lived through: Palliative Stories – the EAPC’s occasional series from the perspective of patients and family carers

  1. Esther Schmidlin says:

    Dear Miss Mahler, thank you for sharing your very sad experiences with all of us. My heart is with you and your children.
    I am a nurse specialist in palliative care and I find it so important to understand the experience and perspective of those we care for. Your story shows that within many health services we still need to do much better in communication with the patients and their families. We also learn about gaps in much needed palliative care services and gaps for a well functioning collaboration between different health care providers and support organisations. Losing a son and a husband through illness in such a short period of time must have been immensely painful and understandably is still affecting your life profoundly. This pain and grieve is not – it seems to me – avoidable. However – having not had the chance to receive the appropriate support for your loved ones and yourself during the time of illness and death is an extra burden that could have been avoided – with the appropriate care and communication that should have taken place in such situations. Not only specialist services, but all healthcare professionals who work with people who are affected by a life threatening illness should be educated in palliative care. Your story motivates me to continue to work on projects, which help palliative care to be better integrated into the all health and social services. I am glad for Germany that its new law for palliative care reflects the priority of this kind of care should have – I hope your unnecessary suffering will not have to be re-lived by many others
    I wish you a lot of strength and ongoing support to get through this traumatising experience and I sincerely hope you’ll find again some serenity and joy in everyday life and in the future. All the best.

  2. Julia Franklin says:

    Thank you for writing re. your experiences…….I hope those reading it will ‘take note’of the the aftermath for you after these two poignant stories… I feel so angry on your behalf— there really is no excuse for such inhuman care and having experienced some difficult moments myself recently in the quality of my own care, having worked in the early days of palliative care, perhaps I asked too much, but we need to take heed of stories like yours and make sure that appropriate support is offered to people going through the type of trauma you were going through….. there is absolutely no excuse for it….. I do hope you can come through to the other side’ and use those feelings as you come through t the other side and influence a change of attitude etc., etc., …Julia Franklin

  3. Petra Mahler says:

    Thank you for your kind words, yes .. there is a lot added to the unavoidable there already was .. even without the ‘extra’ to deal with, it seems more than a heart can take.
    I am hoping for more good changes, even though it doesn’t change what we have been through.
    End of life care decisions are one part .. then there is the huge part
    of using the right language
    in communication ..
    it seems to me,
    that people in such extremes need someone to function as a translator ..
    someone who speaks “Palliative” and “Love”
    and officially has the right
    to speak for and with the patient and their families.

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