Naomi’s story of caring during COVID-19

Since contracting meningitis as a baby, George has needed round the clock care for a range of health issues – he has cerebral palsy, dislocated hips, is wheelchair bound, epileptic, peg fed, deaf, and non-verbal. Naomi also has a 15-year old daughter Kaya, who has dyslexia, and a very sociable and active nine-year old son Bobby. George is on the COVID-19 vulnerable list, so the whole family has had to self-isolate for 12 weeks, including Naomi’s husband.

During the virus outbreak, there have been a number of changes to the health and social care support George normally receives, including no professional physio or respite care, and a cancelled operation, although some social care support has continued. Naomi has had to manage her anxieties about Georges health, while also adapting her usual care routine so that she can home school and care for her other children.

What challenges have you faced during the coronavirus outbreak?

George’s professional physio care has stopped because the physios are working on the front line. My husband and I have been doing his physio every day; it’s the least we can do to ease the pressure on the NHS, knowing that his team is saving lives during this pandemic. His hip operation has been cancelled too, and we’ve been worrying in case anything happens to his hips in the meantime. I have been reassured by his team that I can take him to the hospital if there is an emergency.

George usually goes to respite care once a month for three nights, but this has stopped, although he is in contact with is care worker. He is still receiving a six-weekly visit from his social care team, which is really good as it gives George some normality. His social worker keeps to the government guidelines on social distancing – she visits in the garden and wears PPE. I was worried about George’s reaction to the PPE, but it doesn’t seem to bother him, he’s just happy to see a friendly face.

Home schooling has been our main challenge, but not for George as he is home schooled anyway. He is missing his day trips on the bus though, as he is friends with local bus drivers, and he enjoys visiting Weymouth. The main challenge has been home schooling our other children.

Kaya has dyslexia and uses a laptop in school to help with her work, so she struggled at the start and was worried that she would fall behind. Her school has been very supportive.  She receives help from her guidance teacher, they have lent her a laptop, and she is now in a routine with her work and regular contact with her friends.

Bobby has found it difficult not seeing his friends and he worries that he may not see some of them again when they move to different middle schools in September. His school has kept in contact, sending work home and the children are encouraged to check into school on their website to see other children’s blogs and attend assemblies. Because Bobby is so active, he constantly needs entertaining. My husband and I are taking turns to play football with him, and we’ve set up our own World Cup tournament that’s been going for a few weeks!

What local support services have you used?

There’s a local group called ‘Need a buddy? Now you see me’. They pick up shopping and medication, and they support people who are lonely. They have been a godsend to us by picking up George’s medication and dropping it off outside our house.

There’s also a fantastic group called the Dorchester Community Kitchen which provides boxes of essential items to low income families and those in need; they make sure carers are included. Although I’ve not used the service, I know a lot people who have, and it’s reassuring to know they are there if I find myself in difficulties. Similarly, it’s good to know I can call the Dorset Council parent carers helpline if my children’s anxieties rise again – I have friends who have found support through this service.

How can services help people like you and your family during the virus outbreak?

My advice to health and social care services is to keep raising awareness about what people should do – let people know how to get the care they need when they need it.

My main anxiety, other than coronavirus, has been around what to do if George becomes unwell. He sometimes has prolonged seizures that require a ventilator, and if his hips dislocate further, he will be in a lot of pain. I spent a couple of weeks really stressing over this but didn’t want to contact his medical team as the news had been telling us not to put more pressure on the NHS.

Luckily, I am a hospital governor so I saw the social media pages for the local NHS, the Council, Dorset County Hospital, and Healthwatch Dorset, which all advised we should keep using the NHS. I really wish I asked sooner rather than worrying, but at the start of the virus there was a lot of confusion. I’m concerned about other people worrying alone who don’t know where to go for information.

Do you have any top tips to pass on to other carers?

My main tip is don’t suffer alone and don’t be afraid to ask for help. These are strange worrying times and there are so many people willing to help others – the community spirit has given me faith in humanity. Dorset Council has phonelines set up to help anyone who’s worried, even if you just need someone to talk to, there are volunteers ready to listen.

I also believe that keeping mentally healthy is an important factor in getting through this; I know that when I am feeling mentally well, I give the best care to my children. For me this involves finding a routine that works for me and the family, including exercise and being organised. I started running or walking early in the morning, showering, eating breakfast and getting the house tidy before the kids get up. My husband takes Kaya, Bobby and the dog out in the evenings so they get fresh air and exercise, and this gives me a chance to get George’s medications ready and to settle him in bed. Some days we have time off from schoolwork and routine and we sit around in our pjs to have a Netflix day – I’m learning not put so much pressure on myself as our mental health is the most important.