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Chris and Heather’s story: From a second diagnosis to finding answers

Chris and her partner Heather talk about Chris’s diagnosis of young onset mixed dementia and the support of their Admiral Nurse Rachel.

When Chris received her initial diagnosis of young onset vascular dementia in 2016, aged 60, her first thought was of her father’s experience with the condition: “I saw my father go through Alzheimer’s disease and I thought that will be my future. When he had dementia there was no support,” says Chris.

Three months after the diagnosis, and with a separate diagnosis of vascular Parkinsonism, she had to give up her much-loved job working with the Environment Agency because of the impact of her symptoms. Chris decided to make the move from Cardiff to Eastbourne to live with her partner Heather.

In 2020, after several years of trying to get an appointment in order to get her driving licence renewed, she finally had a check-up with her neurologist. During this time Chris had noticed some changes in her symptoms, such as loss of taste and smell and difficulty with coordination, but she wasn’t expecting to receive the entirely new diagnosis of ‘possible’ Lewy body dementia.

“I said to the consultant: ‘Well, what does ‘possible’ mean? Can you confirm whether it is Lewy body dementia or not?’ The consultant then replied: ‘It can only be confirmed on autopsy.’ I thought: ‘Well, I’m not ready for that.’”

This lack of a firm diagnosis was disconcerting and confusing for the couple. “We left the room with more questions than we had answers,” remarks Heather.

“It was a real shock, I felt as though I had been kicked in the stomach – and I wasn’t signposted to any services,” Chris says.

The couple had planned to travel around Europe in their touring caravan after they’d retired. “I feel that our retirement has been robbed,” admits Heather. But she remains steadfast: “With everything that happens in life, problems pop up, and you find ways to live with them and live well with them.”

For a while, Chris was forced to search for answers entirely on her own, but she soon found out about the Lewy Body Society through a dementia support group. After contacting them two weeks after her diagnosis, she was put in touch with Admiral Nurse Rachel, who works between the Lewy Body Society and Dementia UK. “It was excellent timing for me,” says Chris.

Rachel gave her the answers that she was looking for: “I was talking to somebody who totally understood what was happening and who could explain a lot of the symptoms. And for the first time, it made sense.”

Coping with symptoms

Rachel has helped the couple understand and recognise Chris’s symptoms and has suggested strategies to manage them. For example, Rachel suggested putting coloured tape on the edge of light switches and furniture to help with the changes in Chris’s field of vision. She also advised using a whiteboard as a memory aid to help coordinate plans and maintain communication. Other strategies have included focusing on activities they can still do together, exploring thoughts about the future and maintaining their relationship.

“One of the things Rachel has said, which we both found helpful, is to put ourselves in each other’s shoes. So, for me to imagine how Heather was feeling and thinking and vice versa. That has really helped,” says Chris.

“We are absolutely blessed to be able to have time with our Admiral Nurse, Rachel. She’s got a massive amount of experience and knowledge, and that’s been immensely helpful”.

Over the course of her dementia Chris has experienced a range of symptoms: loss of taste and smell, a lack of spatial awareness, restless and painful legs, sleep problems, lack of energy, anxiety and low mood, balance issues, forgetfulness and difficulty swallowing.

“The restless legs are awful to watch,” says Heather. “They’re clearly very, very painful. And when you’re watching someone you love go through something like that, and there’s nothing you can do about it, it’s horrible.”

“I’ve found that I might be fine one minute and then in an hour’s time I might not be. It feels like my head is in a fog and you can’t seem to get it to lift and to think rationally and function normally,” says Chris.

“I used to be really good at multi-tasking and so I get frustrated at myself. But I try to remember the things I can still do, and not the things I can no longer do.” Chris says she focuses on going for walks with Heather, doing arts and crafts, helping with peer support groups and doing talks to raise awareness about dementia.

Being proud in the face of stigma

Chris and Heather have also had to overcome the added challenge of seeking care as a lesbian couple. “Having a diagnosis of dementia gives you a stigma but being a same-sex couple gives you a double stigma. Very often in medical settings when we say we’re a couple, there’s a silence, a kind of awkwardness. We’ve never experienced that with Rachel,” says Chris.

After having such a positive experience with their Admiral Nurse, they feel they can be more open about the fact that they’re together. “So often we’ve had to hide that we’re a couple, but why should we have to do that? Looking ahead, the couple have a proactive attitude – Chris has become engaged with activism in dementia awareness, and the pair are continually working at living well together through manifold challenges.

“We are still a work in progress, especially me,” says Heather. “And I am learning through Rachel’s strategies not to get hung up on the little things. Those things don’t matter – what matters is the time we have together.

Because the biggest thing with any dementia diagnosis is that time is precious. Time is the most precious thing of all.”