“When you’ve got a child with special needs, you’re always on call”
Jackie is mum to Hollie, 21, and twins Abigail and Jacob, 18. Jacob was diagnosed with cerebral palsy and global developmental delay when he was a baby. When he was diagnosed with a rare form of epilepsy at 8 years of age, mum Jackie became his full-time carer. “When you’ve got someone with special needs,” she says, “you’re always listening out. You’re always on call, you never switch off.”
In the years that followed, Jacob and his family faced many difficult operations, a constant struggle to get the right medication and a long traumatic stay in hospital during lockdown. “We’ve always had to fight,” Jackie says, “we question everything. It’s exhausting.”
In 2017, the family was told that Jacob’s condition was life-limiting. “You don’t ever expect to be told your child has a life-limiting condition,” Jackie says. “Especially when you’ve got two other children. You think, why him?” At that point, they were referred to Forget Me Not.
"Forget Me Not allowed me to be a mum again"
Jacob started coming for overnight stays at the hospice which gave Jackie the chance to get some sleep and spend time with the girls. “Forget Me Not could see I was more like a nurse and carer than I was a mum. They allowed me to be a mum again.”
When Jacob was in hospital for four long months recently: “It was tough on all of us. Again, I did my usual, I put Jacob first. I stayed with him, the girls were left to manage at home. Forget Me Not saw that. As the eldest, Hollie’s had to grow up quite fast, she’s very matter-of-fact, doesn’t show her emotions. One day she called me at the hospital. She said ‘I just can’t explain how thankful I am to Forget Me Not. They’ve just delivered this package of goodies, they know Jacob’s in hospital, they know that we’re at home on our own and they asked if we’d eaten today. And they’d brought us some ready meals!’ That’s what makes Forget Me Not special to us - we’re all looked after. Forget Me Not was as caring about the rest of the family as they were for Jacob.”
“Life would have been even harder if we hadn’t had Forget Me Not."
After leaving hospital, Jacob and his mum came to stay at Russell House and Forget Me Not became the family’s sanctuary, somewhere they could all be looked after. “You think it’s just for respite. It’s not, it’s support with everything – caring for Jacob’s complex needs, checking up on us weekly in hospital, sitting in on meetings with consultants, being at the end of a telephone when I’m having a wobble or need advice, delivering meals to the girls when I was in the hospital with Jacob and they were home alone. You don’t expect that kind of support.”
“Life would have been even harder if we hadn’t had Forget Me Not. It’s so mentally draining, all the stuff going round in your head. The knowledge that the team have there, it took the strain off. That was a massive help.”
"We made so many more memories in those final days"
Very sadly, Jacob’s condition took a turn for the worse. Forget Me Not provided end of life care and Jacob died on 25th June 2021. Afterwards the family spent time in our Snowflake Suite to say their last goodbyes. Jackie says, “The care Forget Me Not gave not just Jacob, but myself, his dad and the girls meant so much. We made so many more memories in those final days. During our stay, we laughed so much and Jacob had the best people looking after him.”