Our Readers SayTrue life storiesHaving dementia and being gay: fighting the system Having dementia and being gay: fighting the system
By Brian Bayliss - 19/07/2007
Michael (left), in his sixties, was a gay man suffering from an extreme form of dementia and a number of other life-threatening illnesses.
He and I were not "partners" but had a very close and affectionate friendship which had lasted over 40 years. Such friendships, experienced by many gay men and lesbians, can be as significant as heterosexual partnerships and this fact needs to be acknowledged. Ours was a transforming friendship and I still remember him every day.
When Michael became ill he largely funded his own care, with social services acting as receiver. With their permission I bought clothes and personal items for him, and they also consulted me as Michael’s advocate and carer. Michael’s next of kin lived in Ireland and made little contact with social services for the first eight years of his illness.
At the care home the staff were generally kind but not qualified fully to understand Michael’s particular difficulties. A number of issues led to him being excluded from the home and sent to a psychiatric ward. With my intervention, and his psychiatrist’s support, he was allowed back into the care home. I handled a number of other issues regarding Michael’s care. Eventually the care home closed and Michael moved to a more expensive nursing home. The increased cost imposed constraints which I believe led to his personal needs not being met. I used the official complaints procedure to highlight this problem.
Sadly, out of the blue and with no explanation, Michael’s next of kin contacted the council and asked that I no longer be involved with his care, nor given any further information about his condition. Shortly afterwards, Michael was admitted permanently to continuing care in a mental hospital and became the responsibility of the NHS. For the following year, having been excluded from his care, all I could do was to continue to visit him regularly. I decided to appeal to the Ombudsman - but Michael in the meantime died.
I have no doubt that I had a unique role in Michael’s life and in his care. I was the only person around with shared history, having known him as a gay man for 40 years. He was able to co-operate and respond to me in ways in which he could not communicate with the care staff and others. I was the unique link enabling him to access the bits of remembered past experience. I remembered his great interest in films as a young man, and together we watched videos of musicals like West Side Story, sometimes seeing the same bits over and over again. He would take delight in the music, song and dance, having been a keen dancer as a young man.
Weekly visits to my home some distance away were of great importance. He remembered the design and contents of the house, and we would rehearse memories of all this with trigger questions on the way over in the car. He loved to help with cooking and do simple work with me in the garden. We also visited the local gay pub in Hampstead every week. Sometimes people who recognised Michael from the past, taking their cue from me, would come over for a simple chat.
Michael did not remember them, but enjoyed the brief fellowship and the comfort of ‘strangers’. Near the end of his life his condition deteriorated greatly and his speech became slurred. Because of our shared history and often-repeated conversations I was able to his great relief to understand what he was trying to say and to explain things to the care staff although, theoretically, I was forbidden to help.
I felt it was right, for Michael’s sake and others’, to oppose his family’s directions and pursue official recognition of both our relationship and the benefit of the care I had given to him, so I took the matter to the local government Ombudsman. He found that the local council had not acted appropriately and that they should rewrite two of their key policies and pay two financial penalties.
I felt that this was important should similar cases arise. I hope my experience will encourage others to pursue their role of caring with the prospect of their relationship being recognised and valued by the authorities. Our task now must be to contextualise the new Mental Capacity Act for gay people and ensure that local council policy documents and practice reflect it.
As a friend of the Alzheimer's Society's Lesbian, Gay, Bisexual and Transgender Carers Group, Brian has discovered that residential care for this sector of society can cause many problems. He is happy to talk to other people who have had similar experiences and try to help change attiudes. For further information call Brian on 0208 579 2261 or email the Mature Times - jayne.warren@maturetimes.co.uk.