A retired review officer from Middlesbrough has spoken of the stresses and strains of being a full-time carer – and the need for a support network to help in hard times.
Linda Benson has spent almost 20 years caring for husband Darryl, after he developed a complex mental health problem in his late 50s.
“Poor Darryl has been through every test you could think of, including a brain biopsy, but his condition remains a mystery. He has spent years in and out of hospital,” she said.
“Being a carer can be tough at the best of times, but we still don’t know exactly what we are dealing with. It has been a hard road, heart-breaking really.”
Given just months to live
Darryl, 77, first struggled with his mental health while at university in the 1960s, but he went on to work as a civil engineer and raised a family of three children with Linda.
Then, in 2006, his health deteriorated. At first it was thought Darryl had depression, but the illness manifested itself as frontal lobe dementia – and doctors gave him just months to live.
“It was traumatic. Darryl got worse and worse, until he couldn’t walk or talk and was in a wheelchair. The whole family was devastated, we thought we were losing him,” said Linda.
Miraculously, after months of treatment. Linda and her family noticed little green shoots of improvement. His recovery amazed his family, and his doctors even called him “an enigma”.
Holding on to hope
“Within a few weeks of coming home he was back to mowing the lawn, picking the grandchildren up from school and even passed his advanced driving test,” said Linda.
“His doctors had never seen anything like it, and we were delighted.”
Sadly, Darryl did not remain in good health. He has had several more episodes, each lasting a year or more – with Linda being his main carer in between hospital stays.
“I found it hard to ask for help at first. It was fear of failing I think – you want people to think you are coping. But good support is vital – you really do need it as a carer,” she said.
“It is exhausting when you are caring all the time. Everything you plan is around them, every day revolves around their needs, so try and set aside a little time for yourself if you can.”
Seeking support is vital as a carer
Linda found support as a member of our Trust’s patients and carers participation group, as well as through the “lovely” dementia and wellbeing hub at Woodside, in Middlesbrough.
Both activities have helped her develop close friendships with other carers – special bonds she treasures for the help, support, advice and laughter they have provided over the years.
“The hub is a brilliant support. We laugh, and laugh a lot, as we share our stories. It’s lovely,” she said.
“It must be lonely for people who don’t seek any support. I can’t recommend finding support strongly enough. It helps you through tough times. You are not just a carer, you are you.
“Caring can be very isolating, which is why support is vital. Another thing I have learned is to accept hugs. If someone wants to give you a hug, accept it – because they mean it.”
Mystery illness is heart-breaking
Linda looked after Darryl at home in Middlesbrough until last September, when he had another episode and needed to be hospitalised once again.
“I know when it is happening now. He gets confused, his mood changes – it’s as though his brain is on hold, and he becomes a different person,” she said.
“His mobility then starts to go, and he ends up in a wheelchair. It’s heart-breaking because he’s the loveliest man ever, but he does get frustrated that he needs all this support.”
Darryl spent eight months in hospital following the episode in September and is currently being looked after in a residential home due to his extensive care needs.
Try and stay in the moment
“It is difficult not to resent the illness, all carers do at times, just try not to feel guilty about it. I also try to think positively, stay in the day and treasure every moment with your family,” said Linda.
“My family are brilliant. They help and support me and Darryl as much as they can, and our eight grandchildren bring a lot of happiness and love to our lives.
“Every day is different, and there are always things that good – like a smile or a joke. Take every moment, while you can. You are building memories – try and make them good ones.”
