“The fear we have of the virus – it just petrifies us.”
As we mark one year since the first lockdown, it has long been clear that families caring for a child with complex needs have seen the challenges they face intensify over the past 12 months. But what is it actually like for a family caring for a life limited or life threatened child during a global pandemic?
Rachel O’Donnell lives in Walsall with her husband Jonathon. The couple have a six year old daughter Isobel and Charlie, a cheeky nine year-old with an infectious laugh. Charlie has a rare genetic disorder which causes a number of complications. The family have been using Acorns since Charlie was two.
Rachel casts her mind back to the beginning of the crisis in March 2020: “During the first lockdown, our first reaction was ‘panic’. Obviously more so for Charlie’s health at the time.
“Sometimes all you see is the death rate going up and when you see the numbers showing 1,000-odd people have died today, you’re like ‘oh gosh’. Touch wood we’ve not had anyone close to us get it or pass away.”
Initially, the family were advised by their paediatrician and doctor to shield straight away and that they shouldn’t even go into their back garden. The shielding had a massive impact on Charlie’s mental health.
“He took a real step back emotionally, which was really difficult, and it took probably four weeks to try and encourage him back to trying to get back to some sort of himself.
“The fear we have of the virus with Charlie, it petrifies us – that he could get it and that it could be him gone. It’s absolutely the most terrifying thing to think of.”
Charlie is missing a very small amount of DNA – a rare genetic disorder that causes a multitude of complications: chronic lung disease, dilated cardiomyopathy, visual impairment and he can’t walk or talk. Due to an unsafe swallow Charlie is also completely tube fed.
Throughout the first lockdown the support of their local children’s hospice – Acorns, was invaluable. Rachel spoke to Bimla, her Family Team Worker at Acorns every 7-10 days. When no food delivery slots were available, Bimla arranged deliveries of food and essentials directly to their house from Acorns volunteers.
“Bimla would call to check on us and our mental health and see if there was anything that she could physically do. At that point there wasn’t really a lot that could be done because of the circumstances, but it was great to be able to speak to someone. She did everything she possibly could to try and help us which was just a massive lifeline.”
For over a year, because of various restrictions and shielding, the family have not had any carers coming into the house.
“We’ve been 14 months without carers now and that itself is exhausting. It’s not even as if we’ve got support from an agency or anything because there’s just no one. There’s no other support.”
To add to the strain, Rachel’s husband Jonathon, who works in the events industry was made redundant in the summer, and Rachel has been dealing with ongoing health problems.
“Financially it’s just turned into an absolute wreck and my health has been quite a challenge. I was recently diagnosed with rheumatoid arthritis. The medication that they put me on is basically a low dose cancer treatment. It’s completely wiped out my immune system.
“The medication just completely wipes me out. Jon’s now having to look after me and the kids and taking work wherever he can. It’s just a nightmare at the minute the situation that we’re in.”
In June 2020, the family hit crisis-point.
Rachel says: “Jon was completely wiped out and I’d got to the point where I could barely get out of bed. It was at the point where you still weren’t allowed grandparents’ help to do overnights and stuff. It was just absolutely debilitating.”
The family spoke to Acorns and booked an emergency stay for Charlie for four nights. Following a Covid test, Charlie was taken to nearby Acorns in the Black Country, based in Walsall. It gave the family a break that Rachel described as a ‘lifesaver’.
“It just gave us the chance to rest and only have one child to deal with. Before, I was completely wiped out and barely functioning. When I get to that point, my mind just goes, it just skips detail. Then I just start forgetting things. And Jon was at the point of physically being broken. He was wiped out.
“Just being able to actually have a break where we could sleep was amazing. Charlie got to the point where he was waking up a lot in the nights and needed tending to whether it be suction, or changing position or changing his pad.
“We weren’t getting enough sleep and then having to go the next day and do it all again. To be able to get a full night’s sleep was – it was just heaven.”
The continual phone calls from Rachel’s Family Team Worker were a huge help. Bimla was also able to liaise with the family’s social workers and other external agencies, using her expert skills and knowledge of the system to help advocate for the family.
“Sometimes it doesn’t feel like our voice is enough. You can’t get hold of someone, or you feel like you’ve told them a million times and they don’t seem to be listening. It’s great to be able to have that extra voice pushing through.”
With winter and the ongoing third lockdown, even with the warmer weather and vaccine rollout, things are still uncertain and challenging for the family.
Consultants that Rachel needs to speak to because of Charlie’s health are understandably diverted to Covid wards, there is the ongoing strain on mental wellbeing through not having regular contact with friends and family and concerns around new variants of the virus.
The concerns and anxieties faced by Rachel’s family and the hundreds of other families cared for by Acorns are numerous.
Rachel says: “The winter’s been ridiculous. The rules have kept changing and it’s just horrible that we can’t see family. We just keep on praying that the numbers are going to keep going down and that things will start being lifted so that we can see people again.
“It’s really worried us the fact that there are new variants that seem to spread quite quickly. We’re very sensible people. We go out when we know things are going to be quiet and we don’t go into shops. We’re not doing anything or seeing anyone and keeping contact to a minimum.”
Whatever happens over the next year – Acorns Children’s Hospice will always be there for Rachel, Charlie and the whole family.
“Without Acorns through the pandemic – not just us – but I know a lot of other families who’ve hit breaking point and then have had to have emergency stays. We’d have nowhere else to go if Acorns wasn’t there.”