One of the sad realities of having dementia is the loss of relationships. I remember with my own Father’s dementia the friends slowly began to disappear and the visitors to his long-term care home were fewer and fewer. Sometimes this happens with family members too. This is not to pass moral judgment on them ,or even to question their love for their family member. This is an incredibly difficult disease for both the person living with dementia and their family. To watch the person you knew slowly slip away is painful.
I remember a sweet man from India that everyone referred to as Pop. He had been given that name by staff many years earlier as recognition of his caring and gentle nature, particularly when interacting with staff. His decline happened slowly over many years, but one day his death was before us. No matter how much you understand about dementia and the progression of this disease, you are never prepared when it’s time for people to leave, particularly those who held a special place in your heart, as Pop had with so many of the staff.
When Pop’s family were informed that his death was imminent, they said they would not be coming in as they felt the father they had loved and known left many years earlier; they were not unkind, just matter of fact. Staff immediately sprang into action. Their biggest fear was that Pop would die alone and without the things he loved. They wanted him to have a peaceful and loving death. Fortunately, this home was a Butterfly Home and staff were well versed in personhood.
Staff developed a schedule so someone was with Pop every moment (with many not going on break so they could be with him), they created the Pop Palliative Care Experience that included his favourite music, food, and smells. Pop was Hindu but none of the staff were, so they researched palliative care practices for that culture. They filled his room with music, incense and readings that would have been practiced if he had died in his home country. They held his hand, reminded him of things he had done and shared laughs and true feelings with him. When the moment of his death arrived, he was peaceful. As devastating as it was to lose an old friend, staff smiled and cried at the same time; they were going to miss him terribly but they knew they had given their friend a good death and they were there for him in his final days. Many years later staff still speak of Pop fondly, he was their family.
Mary Connell