“We thought dementia was for older people, my husband was just 38.”

Maria Byrne, 53 from Southwick, is a Ward Clarke at Sussex Partnership NHS Foundation Trust’s Burrowes Unit in Worthing. As part of Dementia Action Week (21 -27 May) Maria agreed to share her story as a mum of three children who lost a beloved husband and father to dementia at just 39 years old.

Maria’s husband, Graham, started to experience difficulties with depression in 1993 after being made redundant. Maria, explains: “Graham had been a cabinet maker but the company folded and he found himself out of work. With three young children it was a worrying time but he tried very hard to find a new job.”

Finding work proved difficult and Graham found himself feeling very low. There was no suggestion that his low mood was anything more until 1995.

“Everything just started to get worse. Graham was really good at building things so I volunteered him to make a rabbit hutch for our son’s nursery. I remember watching him hammering 6” nails into 1” pieces of wood and getting frustrated that they weren’t right. I realised something was wrong then.

“Our GP referred us to a neurologist and eventually to a hospital in London. Graham was diagnosed with a rare form of early onset dementia. We were absolutely devastated. We thought dementia was for old people and it was hard at first to understand how my husband in his 30’s could have this illness.’

The family were allocated a Community Psychiatric Nurse (CPN) and a social worker. Early on, Maria attended a conference about Dementia where she discovered there was little information as it is such a rare illness.

“I understood but this didn’t help me and I really needed some support. I spoke to a professor who really came through for me and linked me up with a family in the West Country who were going through something similar. It was a relief to be able to speak to someone who understood. Through this encounter I became a carer contact for other people like me and our family and eventually I became secretary for a support network. It was really important for me to be involved and be surrounded by support.”

Maria cared for her husband at home with support until January 1998.

“Maintaining our family unit was really important for me, to retain some normality and to ensure my children had their father in their lives for as much as possible.’

As Graham’s condition worsened and he became aggressive due to the nature of his illness and the damage to his frontal lobe. Graham had to be sectioned and was taken to into a care facility to give him and his family some respite.

“This was a really traumatic time although looking back now I know it was the right and best thing for all of us. It was so hard at first as all the other patients with dementia were 65 and above and my husband was just 38.

“It’s hard to explain but I felt like half a person. We’d been married 19 years, together 23 and suddenly we were separated. I visited him every day and the staff were fantastic at involving me in his care. I was able to bath him and help with interventions. I am grateful I was given the space to do this.

“I felt like I was my husband’s voice and lifeline. I was able to explain to the staff about the things he liked, didn’t like and his habits and I was so impressed how much they took on board and tailored their care to suit him.’

“I was really lucky that we had a nurse allocated in the summer to be with us from 9am – 5pm to support with visits and trips out to the beach with the children. This was a really special time; although I had lost so much of Graham there were parts of his personality that were still really strong like his instinctive desire to care for (and keep an eye on!) his children.”

After a brief trial living back at home, Graham had to go back into hospital while things were put in place for him to return home permanently. This time he was taken to the dementia unit at Salvington Lodge. Unfortunately it was during this time that Graham contracted pneumonia and passed away on the 14 February 1999.

“I took some time then with my children but after a while decided I needed to go back to work. I went for a job as a care assistant but it was fulltime and realised I would be only able to work a couple of shifts a week. Before starting this role I was offered an alternative job as ward clerk which fit much better with family life.

“Now, we’re based at Burrowes Unit and I find it really helps me to be here in this environment working alongside patients, carers, family and the nursing staff. Part of my role often means I will be the first person people see when they come onto the ward so I try to always be welcoming, friendly and non-judgemental. Everyone’s experience of this diagnosis is different and every patient’s experience is different. It’s a privilege to be here and support people through such a difficult time.

When Graham was on the ward I noticed that even though the other patients were so much older they seemed to understand each other and there was peacefulness in being together. I can still see that here today. ‘

Maria is now a Ward Clark at the Burrowes Unit in Worthing, a 10 bedded assessment unit for people with dementia.

Sussex Partnership NHS Foundation Trust has dementia services across Sussex supporting 4350 people in West Sussex. 240 of these people are under 65 years old.

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Photo: Graham and Maria in 1993 before Graham became unwell.

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