Anita lives in Worcester. Her husband Trevor was diagnosed with early onset dementia in 2005 when he was only 55 years old, and sadly he passed away in 2014.
The first clues that things weren’t quite right surfaced in 2003. Trevor, who worked with people with learning difficulties began losing concentration. “I had to put my foot on the brake when he was driving because he wasn’t stopping properly at junctions,” Anita explains. “But the worst moment was when he forgot the way out of a car park that we’ve been using for years.”
Anita says, “It was a terrible shock getting the diagnosis. You have all these questions, ‘what next? Where do we go? What do we do?”
Trevor’s psychologist put Anita in touch with Helen, who is an Admiral Nurse.
“Helen was my lifeline,” Anita explains. “She answered all my questions, she was never judgemental and she really understood what we were going through.”
Dementia not only changed Trevor’s life but also Anita’s – her role went from being a wife to a carer.
“When you get married you make a promise to stand by your loved one, no matter how hard it’s going to be. And, as a carer, you feel such guilt when you can no longer cope. You really feel like you’re letting your loved one down. Helen was wonderful. She really helped me work through my emotions and made me realise that it wasn’t my fault. I didn’t want to move Trevor into a care home but Helen helped me see that this was the right decision for both Trevor and me as he needed specialist care.”
Not only did Helen provide such invaluable psychological support, she was also on hand to help with practical things too.
“Taking over all the things Trevor used to look after was a big learning curve for me,” Anita explains. “I’d never looked after the finances before! But Helen was an absolute god send and helped me get through it. She advised me to set up a legal power of attorney early and she told me that we could get a 25 per cent reduction in our council tax because of Trevor’s condition.”
“Without Helen things would have gone wrong,” Anita explains. “I would have crumbled long before and the health service would have had to take care of me too. It’s so important for carers to have support as well. As a carer, you want to believe that you can get past it, that you can do it on your own. But Helen would talk to me, and through these chats, we’d discuss what I needed.
She was my prop. There are bits and pieces of other support available but having that one person that you can turn to, who listens and really understands what you’re going through; that makes all the difference.”
Two years on after Trevor’s passing, Anita feels that moving Trevor into a care home for the last 12 months of his life was the right thing to do. Anita explains: “Looking back, the care home kept Trevor safe and it gave him more company than being isolated at home. I hung on for as long as I could before moving Trevor into the care home, but if I hadn’t, it would have finished me off. People shouldn’t feel guilty about moving loved ones into care homes as the care home can keep them safe and adequately support their needs.”
Helen has been an Admiral Nurse for eleven years. Helen describes her role: “Admiral Nurses are there for families throughout their dementia journey and especially through the transitions of caring. We provide families with an understanding of dementia and we offer support that is individualised to meet their needs. We help equip them with the tools and skills to deal with challenges as best they can as well as providing psychological interventions to help families continue caring. We also support them in any decisions that they need to make for the future as well as helping them adjust to life post bereavement.”