For such a terrible disease, Anna Heron remembers. There was a lot of laughs in this house.
Anna was mom and caregiver to her son, Sean. Known as “Tubie” to his friends, at age 39 he was diagnosed with ALS. With the help of hospice palliative care staff and services, Anna, a nurse herself, was able to keep her son at home as his disease progressed.
All the doctors and nurses were wonderful. They would listen to you and your opinion was appreciated and respected. They had all the time in the world.
She says the nurses and staff would make the calls for special equipment or medication as needed. “They knew what was coming,” Anna says of the neurodegenerative disease that came as a complete shock to her healthy son. She looks at a picture of him taken shortly before the diagnosis. He was a runner and loved being outdoors. Anna also fondly remembers her son’s humour, which helped during that time. “He was always joking with people — and they with him,” Anna smiles.
While she was on-hand to help with all his needs, Anna acknowledges there was some stuff Sean needed to talk over with others. Including end of life questions and signing his “allow natural death” forms.
I can still remember Dr. D’intino would pull her chair right over to Sean, she’d hold his hand and rub it while she truly listened and honestly answered his questions. Really touching – and comforting for both of us.
Nurses and doctors would be at their home several times a week. Along with physiotherapists and occupational therapists. Anna says having the option — and full support — to keep her son at home during his illness was life-giving to her. “What an honour to be given those eighteen months he and I had together.”
She says she can’t imagine doing it without the hospice caregivers. “They were everything to us, a support system, big time.” Anna says they provided top of the line medications for him to sleep and to make sure he was comfortable during the day.
They were here for Sean and I in every way, as friends and caregivers. We had full trust in them. You could feel the love they had for Sean. If he wanted to go to the moon, they would have tried to arrange it,” Anna says with tears in her eyes. “I get overwhelmed because they were just wonderful.
Sean died eighteen months after being diagnosed. Amidst her sadness and grief, Anna finds solace in having had that time with him, and is grateful to the entire hospice palliative care society.
If I won money, I’d give them 3.5 million right now.