A Guide for Family Caregivers of Loved Ones with Rare Diseases
Palliative Care and Hospice Care - Personal Perspectives
by Toni Mathieson
Our daughter was diagnosed with the progressive and fatal condition Niemann-Pick Type C disease when she was just three months old. We were then thrown into a never ending round of appointments with the long list of professionals that would become part of our lives. We had to repeat our story time and again, which became extremely difficult and upsetting. In addition, we had to continually pester the appropriate authorities in order to convey our daughter’s need for essential care, equipment and services to assist her in daily living.
When she was two years old we were given the opportunity to create an Emergency Health Care Plan and life transformed! The Plan outlined our daughter’s needs and wishes, addressing complex and sensitive issues in an appropriate manner. I am not saying it was easy to have the difficult conversations about palliative care and end of life, but I am pleased we did it then, as when the time came – when she was just four years old – we were able to give ourselves completely to caring for her without the added stress of making decisions. During her short life, the Plan made visits to the A & E department easier, improved communication between the many professional disciplines involved her care and ensured she received the individual care and support she required as her needs presented (not six months too late!), making a vast difference to her quality of life. In our view, it is greatly valuable to think ahead – however difficult this may seem at the time.
During the last year of our daughter’s life, she and I enjoyed a few days break at Martin House Children’s Hospice in Wetherby, UK. This was our first visit, as I had been nervous of visiting a hospice beforehand. From the moment we arrived, the staff made us feel at home and we were showered with care and warmth.
My daughter thoroughly enjoyed her stay, with the staff helping her to take advantage of all the facilities including the light room and the music room, whilst I was encouraged to drink too much tea and eat too many cakes! Together we created lasting memories by making hand and foot print pictures for the family and enjoyed walking in the wonderful relaxing garden. We certainly benefited from our stay, returning home feeling relaxed and recharged and knowing we had the support of all at Martin House as and when it was needed.