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80-year-old Gloucestershire resident Daphne [pictured], has cared for her 83-year old husband Michael for 43 years since he suffered brain damage during a suicide attempt. Michael now has additional health and care needs which, combined with COVID-19 and social isolation, are presenting new challenges for Daphne to manage.

How did Daphne become a carer?

Michael has lived with depression all of his life, and an attempted suicide in 1977 left him with severe cerebral brain damaged due to carbon monoxide poisoning. Daphne was left to pick up the pieces and she has been caring for him ever since. Michael now also has prostate cancer and Alzheimer’s in a different part of his brain, so his care needs are becoming more complex.

It was difficult becoming a carer?

Prior to his suicide attempt Michael had been a mathematician and they had planned to have a family. Caring for children as well as her husband was not an option for Daphne, especially as she now had to be the main earner.

Michael attended day centres, and in time, he was able to gain a sheltered work placement. As his memory and health gradually improved, and with the support of Daphne’s parents, she was able to return to work, providing much-needed income for the family. She became an inspector of art and design in inner London, visiting colleges, adult and youth centres. Daphne worked away during the week and returned home at the weekend to care for Michael and her parents. She would do a week’s worth of care and activities in a weekend, while grieving for the man she had married and the family life they had planned, and then she would return to work.

After 20 years as a carer, and working and travelling between London and Cheltenham, Daphne was exhausted. She eventually broke down, physically and mentally, and social services had to step in to help her recover.

Recognising and supporting the needs of carers

Daphne came to understand that the stress and isolation of caring for Michael had impacted on her own health. She recognised that she needed to rebuild her own life and confidence, alongside caring for Michael. When she was well enough, Daphne put her experience and understanding of carers needs to great use. She spent more than 20 years championing carers in Gloucestershire, working to improve the parts of the health and social care service which had caused her the most pain, to make sure other carers did not have the same negative experience as she had. Daphne worked for various carers organisations including Carers UK and the Carers Trust, and she was also part of a group that worked with GPs in Gloucestershire to ensure that unpaid carers were identified and prioritised for care and support.

Advice to other carers

Daphne said: “Looking back, I don’t know how I really got through all those years, having to fight so hard for support. I would tell any carer that asking for help is never a sign of weakness. Do not wait until you are at the point of crisis, like I did – find out what support is available for the day when you might need it. I would also tell them not to give up their job if it’s possible, because you need it to keep you sane and you also need the money.”

Caring during COVID-19

At this late stage of their lives, Daphne and Michael once again face changes and new challenges due to the threat of coronavirus.

Daphne quickly understood they were at high risk from coronavirus due to their age. They have not left home since the first week of lockdown and she thinks they will stay at home for the rest of this year and maybe longer.

Daphne is doing what she can to keep them safe and well. She has organised for their medication to be delivered by the pharmacy, she arranged for them to be added to the supermarket priority online shopping list, and she keeps them in touch with Maggie’s cancer support group via Zoom. However, as time goes on her mood has reduced, she said: “I feel as though I have a death sentence hanging over me and my husband.”

Daphne is also finding the social isolation tough. “Since lockdown, I have realised that although most of the support groups we usually attend are primarily for Michael, they are also really important to me.” And, she misses the paid for care worker who normally visits for three hours a week: “It was someone to talk to, who understood what I was going through as well as someone to make a sandwich for Michael and for me… It wears me down being together 24/7. His short-term memory is not very good, and although we have found a way of coping, the pressure does get me down.”