“I’m losing myself in the role of a carer”: One carer’s story

As part of our ongoing campaign exploring the different sides of caring for someone with dementia, we spoke to one carer about her experience. She has chosen to remain anonymous.

“I’m a woman, I’m a daughter, I’m somebody’s sister. I’m a wife as well. I’ve got the label of a teacher when I look at myself in terms of career. I view myself as a bit of an artist as well, an ex-dancer.”

Then there is another part of her life she never expected to have. “I’m a carer now.” She cares for her husband, who has dementia. They have been married for 29 years, but she says she never imagined she would find herself in this role when they got married.

Being a carer now feels all-encompassing.

“I have forgotten all about it, to be honest,” she says of the other parts of her identity. “Because that, at the moment, feels all-encompassing. I’m losing myself in the role of a carer.”

A relationship that has changed

Caring for her husband has changed their relationship in ways she never expected. “He’s not the person he used to be. He’s a completely different man.”

She talks about missing his kindness, his strength and his way of loving her.

“Most of that is not present, or some of it is present in a very, very, very different form.”

For her, it feels like an accumulative loss. Her husband received a cancer diagnosis in 2013, and his dementia diagnosis came later, in January 2024.

“It’s almost like having a dependent child as opposed to a husband.”

Life before caring

When asked what life was like before becoming a carer, she said: “It’s almost like being a butterfly in the garden, carefree almost.” She remembers having less responsibility and describes there being “more light” and “more sounds, more songs”.

“It’s a bit dull at the moment.”The difference between then and now is stark. “The constant loss and the uncertainty. And that hyper-vigilance. Stress. I think I’m in survival mode 24/7.”

Yet when asked what has surprised her most about being a carer, her answer is her own resilience. “That I keep going on. The demands are relentless, and somehow I find the strength to carry on.”

Finding Together Dementia Support

After her husband received his dementia diagnosis, she was referred to Together Dementia Support through an Admiral Nurse. At the time, she says she was completely engulfed in the diagnosis and in “big denial”. She didn't know anything about TDS.

The first person from TDS to reach out to her was someone she remembers as being “absolutely full of life”. Over time, she says she realised that there was still some hope.

Her husband joined a TDS Friendship and Activity Group, and she also reached out for support herself, particularly when she needed respite.

“It’s quite comforting to know that TDS is there. [It's] like a comfort blanket. I might not speak to any of you for a while, but I know that I can pick up the phone and carry on where I left off.” She says the support has been “very, very helpful” when she has needed it.

When respite finally came

Respite became particularly important at one of the darkest points in her caring journey. “I was absolutely burnt out from carrying responsibilities and being ill myself.”

But the support took three months to arrive.

While she waited, she felt as though she was constantly looking towards the point when the respite would finally arrive. When it did, she found that accessing respite involved things she had never had to do before. She had to find care homes, visit them, talk to them and negotiate the arrangements herself.

“It was a shock to the system to go to a care home first.”

When the respite eventually arrived, it took her a while to realise that she was actually on respite. Then, she had a moment of clarity. “I thought, oh my goodness, I’m free. I haven’t got the responsibility.”

Looking back, she wishes she had known earlier that she might need to find respite herself and that she could have started looking for it sooner.

“Don’t give up asking for help”

Her experience of trying to access respite has shaped the advice she would give to other carers.

“If I had one message, even if you could put a fiver away a week for respite, start from the day your loved one is diagnosed.”

She describes respite as “a lifesaver”. “I hope that nobody will ever give up asking for it.”

Every carer's experience is different

This is one carer's experience of living alongside dementia and caring for her husband.

For her, caring has meant a changing relationship, a sense of loss, living in uncertainty, and feeling as though she is losing parts of herself. But it has also shown her a resilience she didn't necessarily know she had.

She has found support through Together Dementia Support, and knows that she can pick up the phone when she needs to.

At Together Dementia Support, we know that every caring experience is different. Through this campaign, we're sharing different stories from carers to show some of the many realities of caring for someone with dementia.

If you're caring for someone with dementia and would like to find out more about the support available from Together Dementia Support, please get in touch.