Parenting a child with a terminal illness
Ireland's only hospice for sick and dying children offers support for the whole family, says Edel Coffey
When we think of hospices, we think of homes for the aged, the last places for the sick and dying. We rarely connect the word hospice with children. It's simply wrong that such a concept could exist, but sadly, such a thing is necessary.
The Laura Lynn Foundation is a hospice for sick and dying children, Ireland's only children's hospice, in fact. It opened in September 2011, and came about as a result of founders Jane and Brendan McKenna's own tragic loss, the deaths of their daughters Laura (4) and Lynn (15).
Dr Aidan McKiernan is Clinical Psychologist at LauraLynn House and provides support to families as they adjust to one of the most difficult challenges a family can face – the loss of a child.
The hospice offers a range of care for children with life-threatening and life-limiting illnesses, from support for healthy siblings who often feel left out, to support for families following the death of a child. McKiernan deals mostly with the parents of these children.
Nobody wants to tell their child they are dying, especially when the child may not even understand the concept of death. When the worst happens, and a parent discovers their child is dying, what should they say? "It's really important in families that parents take leads," says McKiernan.
"It is a very sensitive area. All of the research says it's important that children be included, that there is honest, concrete communication and that it's explained in clear, age-appropriate terms what's happening to them and how everyone feels about that."
McKiernan acknowledges that doing this is hugely difficult. "When a family has a problem communicating that, it's a reflection around their own difficulty with it, which is wholly understandable. A good, loving family wants to maintain the status quo and for everyone to be okay and not upset, but instinctively people know that they're dying, and children will typically know more than they're talking about. Children are expert at reading behaviour. They don't do what we say, they watch what we do. It can be sensitive bringing a family around to having those conversations so that a child can be part of a preparation for their own death. Parents should try to avoid the use of metaphors like 'you'll go asleep'. That confuses children and makes them afraid to go to sleep."
Such a conversation is unimaginable for most parents but there are other day-to-day issues that McKiernan also helps with. "The concurrent problems, normal day-to-day stresses and strains, must be contended with. You have the strains around the actual care situation that involves huge coordination. These families have to attend to nursing, child-minding for siblings, ensure they're getting the level of support from various services involved. Then there's the child, who needs constant care and attention with special needs and strict routines with feeding, medication, sleeping."
Naturally, these stresses put a huge strain on families. "Families will talk to me about not being able to do things together as a family, having plans and then those plans suffering."
LauraLynn runs 'sibling camps' for the brothers and sisters of the children in the hospice. "Parents will talk about having to juggle time with the sibling with special needs and the other kids."
So how do parents cope? "There is huge uncertainty when families don't know what's going to happen next year. Many will say they've learned to take every day as it comes. Families will talk about feeling isolated and overwhelmed by it. At times the support can fall short. It's very tricky at times for people to know how to support a family."
I'm surprised when McKiernan says psychotherapy may not be for everyone.
"It's tragic what's happening here but the experience of a loss, even the profound experience of losing a child, is a normative event. So many families will come through LauraLynn and not necessarily need professional or structured psychological or emotional support. Others will. People do cope differently."
The most important thing for McKiernan is that families know about the LauraLynn service. "There are families out there who will have children who meet our admission criteria but who probably don't know of the service. It's important people know it's the National Children's Hospice with a high level of care for children with life-limiting illness."
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