For families of a child with life-limiting conditions, it is often said that the night is the worst time. The need for care doesn’t end when the child goes to sleep, instead the difficulties of day time are magnified.
Sophie, a Tŷ Hafan nurse, and Paul, a Tŷ Hafan dad, sat down to discuss a night at Tŷ Hafan and the importance of nurses during short break care.
The nurses take turns doing night shifts with the main difference being that there are fewer people at night. We are allocated children and at the start of the shift we will read their file and go from there.
I came in for a shift after our staff conference. The hospice had been closed for our Professional Development week, but was opened for an emergency for end-of-life care. There was a certain amount of trepidation when I got there, not knowing how the family would be, but they were well settled and their little girl was comfortable and we sat down together and ate a Chinese.
It was random really, no heroic nursing went on, but they were comfortable with us despite the situation.
It has an adverse effect on the family unit too as they don’t sleep together. They often sleep in different rooms at home and when they come here, it’s the one time they can be together. Without that, a lot of families just wouldn’t survive. It breaks you down as a couple. Some couples have told me that before they came here, they hadn’t slept in the same bed together for four or five years, perhaps since their child was born. If you look at the stats on broken down relationships, you can understand why it happens.
The family has their bed in the flat which is great for the most part, but if they’ve spent every night next to their child, they might not be able to sleep like that. In that situation, we’d move the bed downstairs into the child’s room so they can be together.
I’m always much more reassured when a parent stays. As long as they’re sleeping well at night, the best person to have with the child is mum and dad. Parents often know best because their child’s conditions can be so complex, only they know what is really going on. We learn a lot from parents.
So important to sit and talk with the family. We show we are human and that helps build that relationship. It can be much more difficult to develop those relationships in a ward or hospital setting.
If the child is ill, you don’t want to be apart, because you don’t know what is going to happen. That terrible fear of not being there when it ultimately does happen, you just want to be close. When we were here, we would stay upstairs, but were down ready for him at breakfast time. But we were just upstairs and we knew if anything happened, we were just a step away.
When kids are ill, parents almost click into a non-parent mode. They are so used to it. This is what we need to do. Professional. It speeds up the whole process, helps with the stress of a situation and hopefully gets you over that difficult situation.
If an ambulance is called for whatever reason and they need to resuscitate the child for example, sometimes certain ways of resuscitating can cause more problems, so parents would know what’s best in that case. A receptive paramedic could use the parents expertise to inform their own decisions.
Every child is unique and in an emergency, things happen very fast. The paramedic’s job is to save the life and speed is of the essence, so they might not have the time to really look at the paper because it’s complicated. At least parents could help them make the best decision for that child.