When Bealinda Lucas’s dad was dying, his family wanted to care for him at home. But the support he needed just wasn’t available
"We loved dad and wanted him to have whatever he wanted, and what he wanted was to go home. We had to bring dad home. But once we left the hospital, it was into the utter abyss of the care system." Bealinda Lucas, financial controller, FCC
My dad, Rev Beale Griffin, passed away on 22 July last year of pancreatic cancer.
A retired teacher of 30 years and Methodist minister in the last 10 years of his career, as well as a loving father, grandfather and mentor to many, my father was a man who overcame obstacles with grace and courage.
My dad had a number of medical conditions, including diabetes and blood pressure. In 2016 he had a laryngectomy which meant that he breathed through his neck, and that he had low calcium and magnesium levels.
He became ill in April 2021, and my parents, always trying to do the right thing, went to the GP on multiple occasions, but because of the pandemic the GP wouldn’t see him in person. Things grew urgent as he started to lose weight at an alarming rate, so they went to A&E on several occasions as they knew they would be seen there. A&E, in effect, became the new GP. He was admitted several times, then discharged with bags of pills days later, only to be re-admitted again.
On 20 June 2021 (Father’s Day), dad came home with 20-25 pills to take per day, plus insulin for his diabetes and oral morphine for the pain.
The hospital hadn’t wanted us to bring dad home for palliative care, because of how much work it would be for us, work they thought we would be unprepared for. They wanted dad to go to a hospice, but my family are from Sierra Leone, a small country in West Africa, which made their advice culturally tone deaf. We couldn’t put him in a hospice – it would be seen as the height of ingratitude for his years of devotion to us and to his wider community. More importantly, like everyone else, we loved dad and wanted him to have whatever he wanted, and what he wanted was to go home. We had to bring dad home. But once we left the hospital, it was into the utter abyss of the care system. Which didn’t seem to have any system at all.
Dad, the cancer aside, was a very active man, a keen gardener and walker. So even though the illness made him weak, he was still very active. One week before he passed away, he harvested his tomatoes from his wheelchair. The drugs the doctors gave him only managed pain, they didn’t take into account his personal strength, so even though we were promised 24-hour carers at home, what we actually received was a theoretical two hours and 15 minutes during the day and then a night carer – and the reality wasn’t even half of that. Only the night carer was useful.
That isn’t to malign the care workers. Because I took time off work to be with my dad, my elder brother flew in from the US and because my mum was there, the three of us were able to look after dad. The carers were meant to help with my dad after my brother went home, and after I had gone back to work, but dad didn’t live that long.
My dad’s care was a tale with two themes. First of all, the people involved in his care, who showed immense kindness, compassion and empathy. Their goodness towards my dad will live with me for the rest of my life.
Then the system, utterly fragmented, too complex for someone in a time of distress to decipher. Unfortunately for me, my experience of the system will stay with me for the rest of my life too.