A woman who has published an honest account of caring for her late partner who had dementia
Caring for someone with dementia is tough enough, and same-sex couples can face additional obstacles. Heather Stephen speaks to a carer who has written a book about her journey.
When Rachael Dixey met the woman she would later share her life with, she didn't even like her. But within a few months, they had fallen deeply in love and were together for 33 years until Irene's death.
'We were introduced by a friend and we immediately disliked each other.
'Irene said I was stuck up and I thought she was immature, but the first time we spent time on our own we realised there was chemistry.
'It wasn't long before we knew we had found the one we wanted to spend our lives with.'
Rachael was a 26-year old public health researcher and Irene Heron, a secondary school teacher aged 33. Seven months after meeting they had bought their first house in North Yorkshire and were looking forward to the rest of their lives together.
They had many happy years. However, when Irene was in her early 50s she began to behave oddly.
'She just started being less capable. She had always been the life and soul of the party, but she lost her confidence and kept losing things.
'We thought it might be down to the menopause but as it went on I said, "I think you should go and see the GP.'
The GP referred Irene for tests and a brain scan. The results were devastating. 'When the psychiatrist said Irene had Alzheimer's, we were stunned. We hadn't even considered that.
'As soon as we left, Irene said, "They don't know what they're talking about." Nowadays people may be coached on how to deal with the diagnosis and how to live with it, but Irene never accepted she had dementia and that was very isolating for me.
'She was the one person I spoke to about everything, but I couldn't talk to her about this.'
As the months went by, the couple tried to carry on as normal. However, Irene's behaviour became increasingly bizarre and Rachael decided to take her back to the GP.
'I expected the doctor to say it was nothing to worry about, but she looked at me and said, "Irene will be in a care home in three or four years." And she was right.'
Living at home
Rachael did her best to make sure that Irene could live at home for as long as possible.
'I contacted the community psychiatric team in Leeds, who were brilliant. Someone from the young people with dementia team came to see us once a month and I organised care for Irene on the four days I was working.'
But Rachael, now 62, says that despite the support, life became increasingly difficult.
'It was really tough. Bit by bit, Irene was losing the ability to do things and her behaviour became difficult. She would do the classic storming off, and then she started being paranoid and not recognising me.'
Things came to a head when Irene threw Rachael out of the house, believing her to be an intruder. When Rachael told the community psychiatric nurse, she said that Irene needed to go into hospital. The nurse predicted that Irene would be on the acute psychiatric ward for two to three weeks. As it happened, she was there for more than two months. During this time, Irene deteriorated so dramatically that medical staff advised she should move into a care home.
'I chose a home that felt like it would be the right place for Irene, but not long after she arrived the manager told me some of the staff had been worried that a lesbian was arriving.
'I don't know what they thought a middle-aged woman with dementia was going to do then, and I don't know the basis of their fears to this day.'
Fortunately, the manager organised training to help the staff deal with their misconceptions. Irene went on to have a very happy five years at the home.
'I was always treated with courtesy, warmth and affection by the staff. And I think our strong relationship and the frequency of my visits did a lot to dispel fears and show we had as loving a relationship as any straight couple's.
'There is a perception that gay relationships are not as significant as straight marriages. In my village our milk lady, who delivered our milk for 25 years, expressed surprise at how often I visited Irene. I doubt she would have done so if Irene had been a man and my husband.'
Rachael says that, being gay and caring for someone with dementia, she felt part of two minority groups, which was doubly isolating.
Contacts through Alzheimer's Society and OLGA – the Older Lesbian, Gay, Bisexual and Trans Association – meant that she met people who could relate to her experiences.
'It is nice to be with other gay people, to not always be in the minority and just to be accepted for who you are.'
When Irene died three years ago the sense of loss was terrible, but Rachael says the grieving process began a lot earlier.
'The main loss came when Irene went into care, another when she couldn't write her name. It is a long, agonising process but it does give you time to get used to the inevitable.'
Rachael found talking to a counsellor an invaluable outlet, and she had twice-monthly sessions for six years.
'Having counselling was the single most important thing that helped me through. I was able to offload what had happened that week and it definitely eased the grief.'
Keeping a diary was another source of support. After showing the diary to her friend Brian Daniels, he suggested that she should take it to a publisher. The outcome was the book Our dementia diary: Irene, Alzheimer's and me.
'I have had academic books published before, but this is the first time I've told such a personal story. It feels weird being so honest. People saw me as outwardly confident and getting on with things when really I was a complete wreck.'
Rachael's experiences inspired Brian to write a play – Don't leave me now – about young onset dementia and its effect on families. To date there have been over 70 dramatised readings in venues ranging from hospitals and care homes to universities and libraries.
Learning to adjust
It has undoubtedly been a dark time in Rachael's life but, as time has gone on, she has learnt to adjust. Now retired from her job as a professor in public health promotion, she has bought a motor home to 'pootle around' the Yorkshire Dales.
'Grief is something you can't outwit. You have to let it run its course, but time is a healer and there is still so much I want to do.
'Caring for someone with dementia is a massive responsibility, but Irene was my life and I was hers. Even if I had known what was around the corner, I would still have chosen to spend my life with the best partner anyone could ever have wished for.'