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Memory Making – holding onto the things you love

Author: Philly Smith - Bear Cottage
24 September 2014
  • A child's handprint; a cherished memory for the family of a lost loved one

The things you love, the things you are and the things you never want to lose

The staff at Manly’s Bear Cottage children’s hospice in Sydney are inspirational in their care for families of children facing the end of life. Clinical Nurse Specialist in paediatric palliative care, Philly Smith wrote for ehospice on the importance of memories and mementos for the families these children leave behind – and how Bear Cottage helps make them real.

We in palliative care use the term memory making, but what does it really mean and how is it different when you have a child living with a life-shortening illness? Life is about making memories with the children we believe we have forever; but what if we don’t?

Parents of terminally ill children are invariably sleep deprived, time poor and living a life full of appointments, check-ups and therapy sessions. A life where any spare time is spent researching further treatment or advocating for their child and their family.  It is important for all parents to make the most of every moment, but for these parents finding the time and energy to do normal things can seem impossible.

At Bear Cottage we encourage our parents to take a break, to be mum and dad and not carers, at least for a little while. We want them to remember the joy in being a parent and to experience it, whether their children are at Bear Cottage for respite or end of life care.

We believe that memory making can be broadly divided into two areas; the shared family experiences, memories and encounters, and the real, tangible mementos that they can see and keep.

Many palliative care services believe that memories reaffirm the continuing existence of our loved ones in our hearts and minds; they will always be an important part of who we are. Memories like these can be of something big and expensive like the holiday of a lifetime, swimming with dolphins or meeting an idol or favourite team.

There are wonderful organisations like Make a Wish that facilitate and fund these once in a lifetime experiences. It is important to organise these while a child is well enough to enjoy them. Then there are those everyday experiences most of us take for granted; the lying in bed and snuggling together, going to the beach and dipping feet in the ocean, sand between the toes or wind and rain on the face, experiencing the jolting movements of a bus or a ferry, or swinging high on a playground swing. Certain sounds and smells can also play a significant part in making and evoking memories.

Dying adults may have a bucket list – things they would like to do or experience, places to visit or things to see before they die. Some children have a similar list, but many don’t talk about it voluntarily and may need encouragement. Then there are shared experiences between parents and their children. Only last week we had a mother with a list of things she wanted to share with her young baby before she died … seeing a sunrise and sunset and taking her to the beach; memories are, and always will be, forever.

More tangible memories include things parents are able to hold – things they can share and enjoy with other people – things that make their child real both to them and to others. Children may have the inherent need to leave a legacy. They will use every ounce of their remaining energy to create and finish things they feel are important. Consider the importance to everyone of a painting of your child’s handprint, a piece of jewellery created from your child’s fingerprint or a family tree illustrating the connection between each and every member.

These are all examples of the very real and tangible existence of a child after he or she is gone. Photographs add life and experiences ­– and memories ­– to a family tree but it can be a challenge finding images of all family members.  If a child is looking very sick and parents are torn over such a confronting visual reminder, a professional photographer can take simple, yet stunning pictures – family hands entwined, or heads together – endless possibilities with a little bit of imagination.

Bear Cottage staff try to help families with what they feel they need to do, to achieve the things that they need to achieve and create what they feel they have to create.

Staff will step outside their comfort zone and suggest things to families they may not personally like. We owe that to our families because every one is unique and no one size ever fits all. For example, while photos of a child after their death may be anathema to some families, they can be a treasure to others, and staff owe it to parents to raise the matter. It may not occur to a recently bereaved parent how helpful and comforting photos like these may be in the future, perhaps for a child whose sibling died when they were a toddler.

We have suggested that families might find a lasting memento in a lock of their child’s hair . Equally significant, they may want to strengthen the emotional connection by putting a lock of their own hair into their child’s hand. As hard as this might be to suggest, as professionals we know that parents have to live with the immeasurable sadness and emptiness of losing their child. We don’t want them to live with the additional burden of regret, ruing the lost opportunity to make that connection.

Our role as paediatric palliative care nurses is to care for children and their families through the disease process, the dying phase and through bereavement. We owe it to our families to share the knowledge that we have gained from those that have gone before. We need to understand that any way families want to make memories, however different or confronting, is the right way for them. We acknowledge our privileged position in nursing and caring for children and their families. Every single family we meet will be unique, and will teach us different and invaluable things if we allow them to.

Life brings tears, smiles and memories. The tears dry, the smiles fade but the memories last forever. That is what we try to encourage.

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