Jacob cared for his wife, Lilian, from the moment she was diagnosed with dementia, a degenerative disease which affects one’s memory and the ability to carry out daily tasks independently. He speaks on the effects that caring for someone with dementia has on your mental health, and advocates for greater awareness and understanding so that other carers can get the help they need as early as possible.
Jacob married Lilian in 1982, and they had a long and loving marriage, up until she sadly passed away at the end of 2025. Jacob shares how much he truly valued their companionship, with each other’s presence always being a constant. Diseases like dementia often change relationships as the person living with the condition can begin to behave differently due to their symptoms, almost the complete opposite of how they have always been, which is distressing to those around them.
Jacob said: “We had a wonderful marriage, and we loved each other for a long time. The dementia took over and that changed everything.”
Most people suffering with dementia experience heightened irritability as a result of their frequent changes in mood. In Lilian’s case, Jacob explained how she began to become violent towards the end of her life. It was at this point that Jacob was advised by the police to move Lilian into a suitable care home. It was a difficult decision for Jacob to make, but he knew it was the right thing for them both as her condition progressed.
He acknowledges that caring for someone full-time on your own can be challenging, “I looked after my wife for a couple of years, then it became beyond my control after a certain point. She kept wandering off, I didn’t know where she was and that posed a safety risk. It was deemed to be safer for her in a care centre.”
Accepting and welcoming the support that care centres and dementia care homes bring helped Jacob to feel more supported throughout his caring role. It meant that he now had time to himself, while also being able to give Lilian more emotional support as a husband, rather than a full-time carer.
Jacob’s compassion and adoration of his wife shined through in his care for Lilian. He would try his best to understand what she was going through, always remaining a source of comfort and support for her. As time went on, Lilian would ask questions that Jacob didn’t know how to respond to, “I didn’t know how to handle her problems, and answer her questions when the dementia took over. She’d say things like it’s sunny outside when it was raining.”
It greatly impacted on his mental and emotional health. Support from charities like Carers First, early on in someone’s caring role can make all the difference and lets them know that there is help there for them. Like many male carers, Jacob felt isolated after being turned away by various organisations and charities.
“I rang everywhere to get help with my mental health and everything else. Living on my own having to do everything for myself and no company, it’s a lonely life really. I’ve had quite a bit of support from the church, and the bowls club."
He’s incredibly thankful to have stumbled across Carers First, who he says were the “only place interested in helping.” “I didn’t know how to handle it at the time. By chance I managed to go to the memory café by Carers First. The nurse helped me on several occasions. I still go to the chill and chat when I can.” The team at Carers First were able to give Jacob advice on how to handle Lilian’s questions and what to do when she got upset, which gave him some peace of mind.
Since Lilian’s passing, Jacob is still receiving support from Carers First. Having a community of professionals to answer his questions and offer valuable guidance and other carers he can relate to has benefitted him in many ways. His story highlights the incredible resilience of those caring for someone with dementia. Experiencing a life-altering situation such as seeing the person you love go through unrecognisable changes takes immense strength, but it isn’t something that you should go through alone. Jacob’s story acts as a reminder that reaching out for support can be life-changing.
*Names have been anonymised in this story.
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