We spoke to Christine about what it's like juggling working life with caring for her son during the pandemic.
“My son was born perfectly. Then, when he was three years old he banged his head. The following day he had his first seizure while sleeping. We rushed him to hospital. He was having 60-70 seizures a day. That went on for six weeks. Then it stopped for three weeks. We thought that was it. Then he had one seizure in his sleep and from that day he continued to have them every day. He is 29 now.”
Christine cares for her son Ashley at home, as well as working for the Royal Courts of Justice. It has been this way since Ashley was in his mid-20s and cuts to services meant he could no longer attend the residential setting in Surrey he had been going to since he was around 11 years of age.
“He was 23 and he needed to be in a setting where he could learn independent skills so I brought him home,” said Christine. For a while Ashley attended another residential setting closer to home to help his independence but Christine brought him to live with her following concerns about his care.
He has lived at home with her full time since 2016. It was that year, after her marriage ended, that Christine was introduced to Carers First and was found temporary accommodation.
“I felt quite alone,” she said. “I didn’t have that support network around me. But Carer's First helped me settle into my temporary accommodation and directed me to white goods which I was so grateful for. Then I moved into my own two-bedroom place. I love it, and they continue to help me.”
“It was a big change having my son come home to live with me,” admits Christine, “but I was still able to meet friends and have time to myself which was important.”
Ashley attended a daycare setting which Christine said was important for him so he didn‘t lose out on having his own thing to do and space now he wasn’t in residential accommodation. It was also important for her, giving her time to herself. When COVID-19 struck, Ashley could no longer attend the daycare setting he had been going to so had to stay at home while Christine worked.
“His seizures mean his sleep patterns can change dramatically,” explained Christine. “Sometimes he is awake into the early hours and then sleeps all day. Other times he is in bed by 7pm and awake at 5am. But, I tell him, and he is wonderful, that work is my time. Sometimes he will start to talk to me about something and I will tell him to hold that thought because it’s not 5pm yet and he will,” she said.
When Christine was furloughed due to COVID-19 between March and July last year, she was introduced to different groups at Carers First - something she said helped keep her in contact with people. She attended an online dance class which she still enjoys. Now she has joined Carers First as a volunteer.
"I tell other people about Carers First all the time. I'm so grateful. I feel so grateful to the people who have helped me, people I have been introduced to who are now friends."
“Volunteering is something that in the past I thought might have looked good on my CV but it’s not about that - it’s about me needing to do this, I need to help others.”
Christine runs cookery workshops “Food for Thought” where she makes videos of her making recipes, or does live virtual cookery classes with a group. She is also showing people how to use their smartphones as cameras and post their pictures.
When lockdown is over, Christine says she is looking forward to mixing with family and friends and planning to go out and have her own quality time.
“I’m looking forward to Ashley being able to spend time making friends and us going our separate ways in the morning and coming back in the evening. His personal development is continuing and I am going to continue with my volunteering work.”
"We need to support each other and the support services too."
Christine said her one piece of advice to other carers would be to find support groups.
“There are support groups. They are there and you can google them or ask social services. We need to support each other and the support services too. We are in this together. That was the case before COVID-19. We have to support each other.”
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