One of our parents, Amanda Harrison, writes about her experience of lockdown during Coronavirus. Her feelings of isolation will resonate with many. Likewise, issues accessing shopping slots and the loss of key support such as the family’s local hospice.

Thank you for sharing your experiences Amanda

“James was diagnosed 10 years ago and I have never felt more alone than during this time. The enormity of caring for James is overwhelming at times”

I made the decision to put James, 12, into isolation on Monday 16th March, a week before lockdown was enforced. During the days leading up to the 16th, it became clear that lockdown was imminent. The death rate was increasing daily and the hospitals were already under enormous pressure. We were given very little guidance on what to do with children with complex needs like James, who has infantile Batten disease (CLN1). So after a sleepless night which resulted in me feeling physically sick I decided to put James into isolation immediately to be on the safe side
Putting James into isolation had a massive impact on the family. I was unable to work. I’m a supply teacher and had two days a week booked which I had to cancel. No work means no wages. I had to rely on friends to take my daughters, Ruby, 10, and Izzy, 8 to school. As my husband and my daughters were still in contact with lots of people, I needed to keep them away from James when they were home. That was a difficult juggling act. James stayed in his bedroom until everyone had left and went back to his bedroom when they came home. No one was allowed into his room except me.
I cancelled all his carers immediately. They care for many different people throughout the day and I couldn’t risk them bringing the virus into our home. This was a hard decision as it meant all of James’ care 24/7 was down to me. I knew how exhausting this would be. James has 25 doses of medicine throughout the day, 3 feeds and an overnight water feed. He has daily seizures, needs suctioning regularly and nebulizers and oxygen when needed.
The local hospice then announced it was closing its doors to families. It was no longer able to offer day care and respite and they were unsure if they could even offer end of life care. For the first time since James’ diagnosis I felt really alone. The comfort blanket of hospice care no longer there and the uncertainty of the future of the hospice was frightening.
The first week I found really hard. I go to work to keep sanity. It’s my therapy. I can be me again and not a mum or nurse. But this had gone. The days were long. Not seeing friends and family who are a huge support to me also gone. I had a huge feeling of being trapped.
Then things got worse. Lockdown. Schools shut which meant I now need to home educate on top of everything else. My husband continued to go to work as he is classed as a key worker. My daughters attend different schools. So I had two different systems to get my head around. Piles of work were sent through from both schools. We had to set up laptops and printers. I felt like half the house was a school and the other half a hospital. Links and passwords didn’t work and I had a 10 year old refusing to do it. Total chaos.
Home educating your own children is so hard. I’d rather teach a class full of the toughest inner city kids any day. The children found adjusting to this new way of life as difficult as I did. They missed their friends and their teachers. They missed the routine that school gave them. They missed their out of school activities. No gymnastics, no swimming, no brownies. Everything suddenly stopped. Both girls needed support to complete their school activities and at the same James needed meds or a feed or he had a seizure. My eldest daughter became Miss argumentative. She would argue with anyone about anything constantly. She was just getting some independence and it had all stopped. It was hard for her to get her head around this.
Having all the children at home meant they were eating me out of house and home. Shopping bills have gone through the roof at a time when we are down to one wage down. We have been unable to get any delivery slots despite having emails from various supermarkets about accessing priority delivery slots for the vulnerable. I log on as soon as I see the emails but they are never any times available. So every week I feel I take my life into my own hands and do the weekly shop. The supermarkets are doing their best to minimise contact between people. The main problem is the general public as some people are still not taking it seriously and not keeping their distance.
Picking up prescription is difficult. Some medicines are taking longer to get hold of. It took over two weeks to get hold of Epilim, for example.
We went through the first 11 days of self-isolation without a single call from any professional. School, GP, community nurses, school nurses, hospice, consultants, not one. Eventually we had a call from the community nurses to check we were ok and didn’t need anything. We are currently into the 5th week of isolation and have still had little communication from anyone. James was diagnosed 10 years ago and I have never felt more alone than during this time. The enormity of caring for James is overwhelming at times. The virtual cuppa with the BDFA was a God send. It was good to see people and chat to them, people who are in the same situation. It lifted my spirits no end.
So lockdown continues. It’s hard going when you can see no end to it all. We try to keep busy the best we can. The Easter holidays are here so no school work to battle with but it’s harder to fill the day. We are doing a lot of baking, a lot a Joe Wicks, a lot of TikTok dances and hoping we come out of this still smiling and still laughing although I’m pretty sure I’ll be a fat alcoholic in need of significant mental health support!