Life is a journey, and navigating your way through it can often lead to unexpected twists and turns. Your caring journey is no different. For some people their caring journey begins out of the blue. Without much warning, lifestyle and routines can shift leading us onto new, unexplored paths.
This is the journey Lynda and her husband Brian are currently navigating. Below, Lynda shares their story, beginning with Brian's diagnosis of dementia and continues through to her changing caring role.
Brian was always active, very sociable and was a happy-go-lucky character. He ran his own business and could always turn his hand to fixing anything. We met when we were in our 50's and have had many wonderful years together.
Brian's dementia seemed to come on very quickly. In November 2022 I noticed he was started to get confused, forgetting names and faces he'd known for years and his patience was very thin. In January 2023 we went on a cruise which he found to be a frustrating experience.
By this point his whole personality seemed to have changed. He had also started to have hallucinations that people were in the house and he was fighting them. I found I couldn't reason with him, what he was seeing and feeling was real to him. As the situation progressed I really did start to feel I was unable to provide the level of care Brian required.
It was difficult as, you always feel that you should soldier on, you'll cope and will find a way.
He was initially referred to the mental health team, but things at home weren't great so he was taken to the RUH, where he stayed for 6 to 8 weeks until they could get him into a care home in Bath. It wasn't ideal though as it was a nursing home wasn't really set up to look after people with dementia and Brian required one-to-one care. We did look at another care home which had a specific dementia care wing and had space. When the decision was made for Brian to go into care I felt a mixture of guilt and relief. It was confusing at first for him and he was often scared and angry at being moved in there. In an ideal world he would have stayed at home. I would wake at all hours of the night worrying about him, and some days it would all get on top of me. I did feel I should have been able to cope.
"I'm still Brian's carer, but my role has changed."
"The care home now looks after all of Brian's personal care, I look after the finances. It's a different sort of caring. I've found with dementia it's a gradual bereavement. They're still there, but you feel them slowly slipping away."
When I go to see Brian now we can spend quality time together, I don't need to worry as much. His face lights up when I arrive, it is, though, often hard when I need to leave.
We did so much together and adjusting to doing things on my own and coming back to an empty house was a difficult process. This wasn't straightaway, it happened about a year after Brian had moved into the care home. In time though it is becoming easier. I’m always looking for new activities which Brian and I didn’t do together as it allows me to make new friends.
I still worry about him, but it's not all consuming as it was before. It's the same with the guilt, it doesn't go away completely, but it changes. I know he is getting the care he needs. Attending the dementia carers group at The Carers' Centre has been a big source of support as everyone there knows what you've been through, or are going through. People understand how you feel.
Navigating a changing caring journey can feel unsettling, but it can also be an opportunity to find balance and prioritise your wellbeing alongside that of your loved one.
We are here for you at each stage of your journey, for practical advice, emotional support or simply to offer a listening ear. Contact our Support Team on 0800 0388 885, Monday to Friday 9am-1pm.
Specialist support
We hold regular specialist dementia peer support sessions each month for those looking after someone with dementia. You'll have the opportunity to talk to others who may be experiencing similar situations to your own and benefit from the strength this provides.
Explore the peer support groups, our regular carer cafés and extensive activities programme below.
