Here is a report from a Critical Care Registered Nurse who has been involved in Lucy’s care since
From the very start in June 2003 I have been involved in Lucy’s care in her own home.
In the beginning, I was mainly working on weekends and on the night shift, later also during the
week, mainly day shifts, around 36 hours a month. In my other job I am still working in Intensive
Care in a Hospital. Initially, it was a massive change and a massive challenge working in the Intensive
Home Care environment.
Initially, I felt more like a butler, not like a Critical Care Nurse. Of course my main job was to ensure a
secure airway and safe ventilation for Lucy, but in a home care environment, Lucy’s social life and
Lucy’s social contacts were priority. After all the initial challenges, but also after the initial curiosity
about my new working environment, things have turned out to be more professional, positive and
What struck me more and more with time, was that Lucy and her husband had very little privacy, as
somebody is always available to cater to her needs.
It is like in any relationship- it’s human nature at its best. Some days it is good, some days it is
average and some days Lucy and her husband want to have an argument.
Those are difficult moments for a health professional. Being very sensitive to people’s mood and not
having the opportunity to disappear in a home care environment, makes those situations very
challenging at the best of times.
Even though I have worked as a Nurse Unit Manager in Intensive Care and I have done management
training, as well as communication training and I have been involved in managing difficult situations
and difficult staff in Intensive Care, the home care environment is different, as you are in the midst
of the family tensions and family dynamics. In the midst of an argument amongst husband and wife,
I would like to disappear, but I can’t. So I have to deal with the tensions and be quiet. I suffer
through the situation and I am tempted to take either side, but I bite my tongue until they cleared
the air. Clearing the air doesn’t always happen straight away. But when I am back for my next shift, I
realise that they have worked through it and the air is actually clear.
It feels a little bit like being a child when your parents are having an argument. You are feeling
insecure and vulnerable.
On the other hand in those situations, Lucy still needs professional help, in order to fulfil her basic
physical needs for nursing care and for ventilator care, even though she doesn’t feel like it.
I can feel the air vibrating. Normally, neither Lucy nor her husband, are trying to get me involved into
their argument. That’s great as I appreciate them both and it makes life so much easier staying
After having done this type of work for a period of time, I am getting more and more aware of how
special and sophisticated this type of work with critically ill Patients, living in their own home really
is. Communication is paramount and even more important than in a Clinical environment. Especially
on a 12 hour shift, I am relying on my communication skills, as there are no colleagues or no other
Patients or other relatives.
But it is and it has been a steep learning curve. We are learning from each other. We are laughing
and sometimes we are sad. But after all we want to build something that is truly remarkable and
that is why I am looking forward to the future!
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