Your Story is a series of interviews with carers. We want to hear your stories and promote the amazing job that carers do – if you would like to share your story then get in touch with Tara at [email protected]

In this post we hear from Donna. She carers for her 27-year-old son Chris who suffers with Scoliosis, ADHD, Anxiety and Learning Disabilities/global developmental delays. Chris is classed as a vulnerable adult. In addition, she also helps her Mum care for her Dad (who suffers with cerebellar ataxia).

She discusses how Covid affected her and her son and how she found ways for them to cope during this time.

Donna's story

Covid-19 has been tough for me as a carer. Trying to explain what has been happening to my son, Chris, has been difficult; he has not coped well with the lockdown and it has made him very panicky. His psychiatrist (who has been amazing) even had put the dosage of his medication up. I have to say his doctors, psychiatrist, social workers and Worcestershire Association of Carers have kept in touch throughout and they have been checking in on both of us, regularly. I have really been thankful for this; they have all been doing an amazing job. To know I could phone any of them, at any time, was important. 

Chris has been very up and down over the past few months. Just before lockdown Chris had been attending cognitive behavioural therapy. He was doing amazing well, he was smiling, happy and I was getting my old Chris back. Then with lockdown, he was gone again, I felt like crying, it was so disheartening.

We received a letter from social services to say we could use his personal budget on different care services. Trying to bring a bit more normality back into his life, while keeping him safe, I arranged for his support worker to take him for a walk to the woods, a place that Chris knows well. They social distanced during their time together but still both got a lot out of it. He had been worried about the police stopping them while they were out, so I got hold of a ‘hidden disabilities lanyard’, with all of his carers cards. This lanyard now includes his mask exemption card too.

It was a hard decision to make, we wanted to limit our trips outside, but Chris wasn’t coping. In the end I decided his mental health was more important.

He was also worried when I had to go to my mum and dads to help them. We were questioned by people as to why we had to go and why I had to bring Chris with me. But I checked with the doctors and social services told and they advised me to do what was necessary.

The worst thing for me was getting shopping. I couldn’t take Chris to the shops, as he would really panic and the online shopping delivery waiting times were too long, it was horrendous. However, my neighbours were great they would keep an eye on Chris whilst I rushed to the corner shop, or I would drop Chris at my mums, while going to a bigger shop, but then the queues were awful and it was taking forever so I had to give up and stick to corner shop. I did manage to get farm shop deliveries for fruit and veg. But these options were more expensive. I get through a lot of bottled water as Chris thinks he will dehydrate! I must keep it stocked up, so he knows all is ok. That was a hard for few weeks for both us. But since Chris has been meeting up with his support worker, I have now been able to go shopping knowing he was safe.

He is now back attending the Worcestershire woodland project two days a week (he usually does three) then one day a week with a dog walking group with his support worker. But even this brings challenges, as I am driving him to and from each place, because he can share vehicles like he used to, but it is worth it. 

Where we live, we have a large lawned courtyard and I organised a social distancing exercise / dance with music on a Thursday evening before we all went out to do the clap for NHS. It really perked myself, Chris and my neighbours up and was something to look forward to.

Chris also took part in the ‘Woof all over Cancer’ fundraiser, which started at the beginning of lockdown. This also helped both of us have a focus and Chris raised a lot of money for a good cause. I was very proud of him.

I think overall it has been mentally draining on myself always trying to stay one step ahead even though I haven’t a clue what’s going on. We don’t watch the news or listen to the radio as it made Chris worse, so I have tried to just pick up on the main things that I feel are important from my neighbours and friends. 

In the last few weeks, I have found that my muscles are very achy, I am really tired and so I think everything is now catching up with me. I am not a good sleeper anyway, as my brain tends to keep going through the night but with Covid and trying to work out the right and best thing for Chris has made it worse. But me being me I will keep going as that is what I do best! I am so looking forward to being able to get a foot and leg massage or something with my carers grant, I could really do with it right now!