As Todd got older and his rare degenerative condition developed, his parents needed help but they didn’t who or how to ask. Todd had a small group of friends from childhood who, as his mobility lessened over time, stayed connected with his mum through phone calls, adapting their social activities so Todd could attend until eventually he became housebound and received 24/7 care from a team assembled by his parents and the Microboard they had created to manage his care.
Glory attended a seminar one day at Children’s Hospital where Todd was a regular visitor due to the rarity of his condition. At this seminar she was introduced to PLAN, a social worker recommended she connect with us. When the question of Todd’s future arose, she now had a place to put her family’s concerns, worries, hopes and dreams. Todd already had people around him who loved and cared for him, however, PLAN was able to support the family in seeing that this network of friends was indeed their greatest resource in what was often a sea of healthcare professionals and opinions.
It is typically very hard for parents and caregivers of people with disabilities to ask for support. These, for the most part, are fierce and fatigued families who have spent their child’s lifetime advocating for the unique needs of their loved ones within a health care system from which they find themselves constantly on the margins. Todd and his family were no different. They spent countless hours advocating for Todd and working tirelessly to provide him a good life. In finding PLAN, Glory speaks of how the conversation changed around Todd’s care and his life. With the principles of a good life now at the forefront of their minds, Glory and Gary could really get down to planning. The elements of a good life, as identified by PLAN families, are having loving friends and family, the ability to contribute unique gifts, participation in decision-making, a place to call home and financial stability.
Along with support from PLAN staff, she used the books Safe and Secure by Al Etmanski, Jack Collins and Vickie Cammack, along with The Final Act of Kindness to prepare for what lay ahead and to reach some peace of mind so their family could actively enjoy the limited time with Todd they knew they had. From this work, Todd and his family created what they call the Book of Todd. Little did they know how these acts of preparation would lead to being able to navigate the healthcare system at the time of Todd’s end of life experience with calm and orderly direction, in turn leading to a peaceful and dignified death.
Todd had a Community Connector with PLAN who, in focusing on his love for and gift of making music, supported him in finding an even more vibrant community to add to his group of lifelong friends. With the connector and Mentor’s support, Glory began to learn how to invite and ask new friends and old to be involved in Todd’s life in a deeper way. As this network developed organically and intentionally around him, Todd lived a rich life where his needs were met, his voice was heard and his decisions about his life and path were respected.
As Todd’s infections increased and it became clear his condition was worsening, Todd was taken to the hospital. Glory was prepared with “The Book of Todd” – she had in hand his Representative Agreement, all documents with Todd’s wishes intact and a clear idea of what might come their way. Their doctor happened to be at the hospital that day, so the Rep Agreement was recognized with no problem, a social worker approached the family and let them know that with no space available in the palliative care unit at the hospital, luckily one bed had opened up at the hospice in their area, they had one hour to decide.
Todd was in and out of consciousness, but together they decided to take the hospice bed. Here is where the network stepped in. Glory let one or two people know what stage things were at and news travelled fast. With a network contact list in place, the PLAN mentor and friends of Todd spread the word that now was the time to visit. Todd was amazingly awake for a couple of days while friends and family visited in a peaceful setting, playing music together, telling stories and saying goodbye in Todd’s final hours. When Todd died and he was laid out, he wore his beloved Canucks jersey with his Def Leppard hat on and his stuffed manatee at his side. His dad said he looked happier than he’d seen him in a long time.
In the days since his death, Glory and Gary have had a great deal of paperwork to manage, however, with the Book of Todd in place, this has been orderly and manageable. Todd knew he wouldn’t be around for his next birthday, he knew he did not want a ‘Celebration of Life’, he knew what he wanted. His wishes were heard because the questions were asked. He loved the music of Def Leppard his whole life, his favourite song was Pour Some Sugar on Me, Todd’s final wish was that friends and family, at his grave, would pour some sugar on him! This is indeed what has come to be. This is how any person would like to live and to die, with love, voice, community and dignity. This should be no different for any human being.
As PLAN supports individuals and their loved ones through all phases of life and into dignified end-of-life care, we’re continually learning and sharing. This year, we were honored to join the Compassionate Palliative Care for People Living with Neurodevelopmental Complexity Network and present at the All Together Symposium hosted by the BC Center for Palliative Care. We remain committed to advocating for equitable palliative care access for everyone.