After caring for her mum, Kay wants people to have better understanding of dementia

‘It was bloody hard,’ says Kay Lomas, reflecting on more than five years as a full-time carer for her mum Jackie, who had dementia. 

‘It’s the complete and utter loss of a person, which ruins not just their life but those of the people around them.’

Kay, who now lives on a narrowboat in Cheshire, came down from Scotland to live with her mum for around seven years.

‘My wife and I separated because of that move,’ she says. ‘Dementia affects families and causes stress on many levels, not just the obvious ones.’

By sharing her story of being a family carer, Kay, a trans woman, hopes to ‘increase visibility and reduce negativity’.

She says, ‘I want people to understand what it’s like to be me.’

Always cheerful 

Kay’s mum Jacqueline, known as Jackie, was born in Guernsey in 1930. She was evacuated during World War II, at the age of nine, to a village near Bury in Greater Manchester. 

After Jackie’s mother died and her father developed cancer, she moved back to live with the family who had previously taken her in, this time in Bollington near Macclesfield. 

A part-time seamstress and factory worker, Jackie married her husband Gordon in 1951 and they had four children, of whom Kay was the oldest. 

‘She was a happy, outward and competent woman, always cheerful, with a wonderful beaming smile,’ says Kay. 

‘We lived on the “make do and mend” and “waste not, want not” concepts. We didn’t have a lot, but there always seemed to be enough, and that was down to her management.’ 

Spelled out 

Around 2011–2012, Jackie was diagnosed with Alzheimer’s. Kay was living in Scotland, semi-retired, having previously worked for the disability charity Scope and as a manager of residential homes. 

After Jackie’s second husband died, Kay moved down to Bollington to care for her mum full time in 2013. 

‘I am a trans woman, but at this time I was still her son,’ explains Kay. 

Before coming down, Kay hadn’t been so aware of Jackie’s memory problems, but was told that her mum couldn’t remember things she’d been doing and was starting to have accidents using the hob. 

‘I wanted to know how much her memory was declining, so I had key questions I would ask her, like the names of her five bridesmaids, as a check,’ says Kay. ‘She started to need prompting, which gave me an indication.’ 

Not long after moving, Kay contacted the Society. 

‘I wanted to find out what’s out there. Alzheimer’s Society is very good at signposting,’ she says. 

‘I also found their information quite interesting – practicalities you might not have thought about. Sometimes you just need things to be spelled out.’ 

No escape 

Kay found caring for her mum extremely challenging. 

‘It was quite intense, straightaway,’ she says. ‘The commitment is total and absolute – there’s no escape. If I didn’t do something, it wouldn’t get done. You feel totally locked into it and very isolated. 

‘As I had previously cared for others at work, I thought I could do it, but this was my mum, not a stranger! I tried to just see it as a job, but I couldn’t. It was very, very personal.’ 

Jackie would do a lot of walking about, including at night, and a couple of times became ‘upsettingly aggressive’ towards Kay. 

Although the family couldn’t afford full-time carers coming in, they did employ some visiting support. 

‘The carers that came were wonderful, and they wanted to stay as long as they could, but they were stressed and overworked,’ says Kay. 

‘They would have 10 minutes to travel three-and-a-half miles, so weren’t always able to keep to time. Because Mum needed things done when she wanted them, I had often dressed and fed her before they even came. 

‘When you’re a carer, you see the system crumble.’ 

One day, with Kay recovering from a broken arm, Jackie fainted in the bathroom due to low blood pressure. 

‘She was swallowing her own saliva and vomit, but getting her into the recovery position with only one arm was very difficult, so I had to use her knee as a lever. 

‘It wasn’t possible to turn her completely but was sufficient to clear her airway, so I could leave her and ring for help,’ says Kay. 

Caring alone with no full-time support became nearly impossible for Kay, and Jackie later moved into a nursing home. 

60-year secret 

It was after Jackie’s move that Kay came out as trans. 

‘I’d known something was different about me since I was six years old, but I didn’t have a clue what it was. In the 1950s, if you were different that was dangerous, so you just kept quiet,’ she says. 

‘One day I thought, “Wait a minute, I’m a trans woman” – everything just dovetailed. 

‘Mum was in a home, I’d separated from my wife, and I thought, “If I don’t do it today, I never will.” By that time, I’d had this secret for almost 60 years. 

‘Apparently, Mum had wanted a girl when I was born, and would have called me Kay, so that’s who I became.’ 

She recounts speaking to her mum as Kay for the first time in late 2018. 

‘I said to her, “Hello Mum, I’m the little girl you always wanted.” She gave me the most wonderful, beaming smile, which told me that she was OK with me like this.’ 

Losing dignity 

With the nursing home costing just over £1,240 a week, Jackie’s house had to be sold to pay for her care. 

And when the COVID pandemic meant that family visits ended abruptly, Jackie deteriorated quickly. 

‘Only when they thought she was dying were we allowed to visit, but this stimulation meant that she recovered, and we had to keep away again,’ says Kay. 

Jackie died in October 2020, aged 89. 

‘Mum was in a very nice nursing home, but you lose your dignity or your sense of self if somebody else is wiping your bottom,’ reflects Kay. 

‘To lose your identity is to lose everything, and the knock-on effects on loved ones who are trying to cope can be devastating.’ 

Better understanding 

Kay is a trustee of MaccPride, a charity she says is ‘trying to improve the lot of LGBTQ+ (lesbian, gay, bisexual, trans, queer plus) people and give them support’. 

She also attends the monthly meetings of Silver Rainbows, a social support network for older LGBT+ people in Cheshire, from the charity Body Positive. 

‘It’s saying, here we are, we’re visible. We’re not hiding, and why should we?’ she says. 

‘I want people to better understand my gender, and Alzheimer’s, and what it’s like to be looking after a person with dementia. 

‘I firmly believe that if we can increase the visibility and awareness of dementia, we can reduce much of the negativity and stigma.’