Written by Brian Baylis
Tim was a gay man suffering from an extreme form of dementia and a number of other life-threatening illnesses. We were not partners, but had a very close relationship. Such friendships, particularly in a situation of dementia, are as significant as partnerships and the role of the ‘significant other’ in the whole process of care needs to be acknowledged. At the time of Tim’s death, aged 65, after nearly ten years of severe illness, we had known each other for forty years.
Tim’s dementia came upon him suddenly, and he was placed in a large run-down mental hospital. A year later, after my intervention, he went to live in a small care home for residents with differing kinds of mental disability, where he stayed for 8 years. When the care home closed, he was relocated to a nursing home for severely mentally disabled patients for a further year, and then spent the last year of his life at a mental hospital in St Pancras.
His next of kin lived in Ireland, and made little contact with social services for the first eight years. There were few visits.
Social services referred to me as Tim’s advocate and carer, and involved me in all meetings and matters relating to his medical, psychological and general care. I visited Tim at least three times a week and often took him out.
When Tim first came into care, he was totally confused, with almost no short-term memory and only small fragments of long-term memory. He had chronic liver failure and diabetes. He was also agitated, very unhappy and at times aggressive as a result of his fears, condition and circumstance.
His sister came across from Ireland in the early days of his illness, with a view to having him transferred to Ireland, and taking powers of attorney. After a considerable delay, she decided to do neither of these things and Tim became a Ward of Court in London.
At the start, Tim seemed a sad and hopeless case to hospital staff, but I had a strong feeling that his quality of life could be improved, and was determined to do everything I could to make this happen.
With the encouragement of the social worker and the psychiatrist, I began taking Tim out on visits to places in Hampstead where he had lived for thirty years. Weekly visits to my home were another important part of Tim’s life. He loved to view the garden from the conservatory, to cook meals together and to help prune the bushes in the garden.
I also began taking him out for meals in pubs; in particular I took Tim to a gay pub in Hampstead that he knew well. I explained Tim’s problems to the bar staff, and a quiet corner table was kept for us. Little by little, Tim re-learned how to play a simple game of dominoes. His concentration and the joy he derived from this, were moving to behold.
He plainly did not belong in hospital and I pressed for him to be moved to a care home. Eventually the psychiatrist organised this. I arranged for the purchase of a TV and video from his funds, for use in Tim’s room where he had to spend a great deal of his time. He had always had an interest in films so I began showing him shows like West Side Story and The Sound of Music. Over many hundreds of showings, he began to get the shape and sequence of the stories in his mind and take delight in the music, dance and drama. Sometimes he was able to anticipate the dialogue, guess the next musical number and sing the songs. There was a noticeable intensity and steadiness of attention, and the experiences temporarily rescued him from the succession of relatively repetitive events which made up most of his life.
In general, Tim’s placement at the care home was fortunate. It took him some years to become familiar with the layout of the house, to find his way around and also to feel some degree of comfort with the staff and other residents. It also took the staff some time to become familiar with Tim’s mood changes and frustrations and to be able to deal effectively with these. There was no caring as such for his dementia.
It was thought necessary for Tim to spend a great deal of his time in his room. Early on this worked reasonably well, as his room-mate did not need to be there apart from during sleeping hours. But when this resident died, the needs of the new resident, who wanted to spend lots of time in the room reading, clashed with those of Tim. As Tim’s almost entire stimulus related to watching and listening to TV and videos, it posed a big problem. I was repeatedly told about the increase in Tim’s aggression and difficulties in managing him. I had to point out that I thought the two problems were linked. When I visited, I was also encountering Tim in an even more confused and dopey state, which I considered to be due to altered medication.
Things got so bad that Tim was removed to a psychiatric ward in hospital where he immediately became severely disorientated and covered in a psoriatic rash. I was visiting him each day, speaking with the staff, and eventually was invited to a meeting at the hospital. Tim’s social worker did not turn up, but I was able to speak in the meeting, and there was very helpful input from medical staff, so that Tim was re-admitted to the care home after ten days. Things became better when, after much campaigning on my part, Tim was given his own room.
I was fearful and concerned when the Council decided to close the care home where Tim was living. He was re-located to a care home for the severely mentally disabled and staff worked hard to help Tim adjust to his new surroundings. I had regular meetings with the manager, as well as attending the review meetings and monthly in-house carers’ meetings. However he no longer received the monthly psychiatric input which he used to get and I believe he was being given increasingly large doses of Risperidone. He became more confused and lethargic than before; his speech became increasingly slurred. Also, for the first time, he became doubly incontinent. After 6 months in the nursing home, he was admitted to hospital for investigation, but he continued to decline until his death almost a year later.
The next very important point is the emergence of Tim’s family. While Tim was living in the nursing home, a representative from Tim’s family suddenly made contact with social services, and from then on, at the family’s direction, I was excluded from participation in all aspects of Tim’s financial and medical care. All that remained was for me to visit Tim, which I did on average four times weekly and, when things were very bad, every day. To the end I remained Tim’s only regular visitor.
During this period, whilst still in the nursing home, when Tim was in and out of different hospitals in a desperate state, the staff refused to give me any details of his medical condition on my daily visits.
On one occasion when Tim was admitted to hospital, I arrived there to be told that it was not possible to see Tim. My response was that I would sit out in the waiting area until they changed their minds. After an hour they did. When I came into the area in which Tim had been placed, I found him totally disorientated, very fearful, and ranting in virtually unintelligible slurred speech. He was being held down by two burly hospital auxiliaries to prevent him leaving the bed. I told them quietly that there was no need for this now. At first they did not believe me, and were surprised that Tim recognised me and that I was able to communicate with him, listening to what he was desperately trying to say, and repeating the thoughts he was trying to express. He quietened down and the two auxiliaries disappeared. Despite all of this and the fact that I was the only person around whom Tim recognised and could communicate with, the staff were still unable to give me details of his condition. I believe his difficulties were created largely as a result of the large dose of Risperidone, which was now being withdrawn.
Subsequently, Tim recovered a little and become somewhat quieter, and the decision was taken to transfer him to a hospital for severely mentally disabled people, where he remained until his death. I was forbidden to attend the meeting which admitted Tim to continuing care and indeed all future care meetings, despite the fact that the team leader and the social worker did not consider that this was justified or in Tim’s interests.
I have seen internal correspondence which shows that social services were well aware of my role as Tim’s chief carer and advocate over the previous nine years, and that they recognised that the family was being unreasonable in excluding me. Yet no-one from social services stood up for me or attempted to exert some moral pressure on the family and expose the absurdity of their attitude.
I was extremely concerned that by admitting Tim into continuing care they were removing all the familiar props which were so vital to his well-being. I wanted to warn them that by taking him away from familiar living surroundings and staff, discontinuing his attendance at the Alzheimer’s Day Centre (which had been part of his life for nine years), and withdrawing vital visits to familiar places, Tim would become completely disorientated and would not be able to come to terms with his new environment.
Although Tim was becoming more and more disorientated, he still recognised extracts from his favourite videos and right to the end was able to join in singing some of the songs. Yet suddenly his five videos disappeared from his room and the family representative refused to buy any new copies out of Tim’s funds, claiming that the ward staff were of the opinion that he didn’t need them. When I asked the ward staff for their support, they were plainly embarrassed and did not wish to be involved. I then did the only thing possible and bought copies myself, which Tim and I continued to watch until two days before he died.
The final indignity came on the day of Tim’s death. I had been visiting each day for some time as he was very unwell and I had stayed on until 10.30pm the night before. It was thought he could last in his comatose state for a day or two longer. But at 7am the next morning, I was phoned by the ward staff to say that he had died. By the time I got to the hospital, his body had been removed from the mortuary by the family, who had removed all his possessions from his room. When I contacted the family representative, she said that it would not be possible to visit Tim’s body or attend his funeral. This is an example of the family’s ruthless determination to exclude me in all possible ways. Subsequently, I wrote to his family twice asking where in Ireland his ashes had been interned, so that I could visit the grave. They had no reply.
For well over a year before Tim’s death, I had been complaining to social services about their appalling, unjust and authoritarian treatment of Tim and myself, and their failure to act in his best interests. Most of my letters were simply ignored, so I had begun pursuing a number of issues through the council’s complaints procedure. The most important issue of all was my exclusion from Tim’s care and the impact this had on his well-being. In excluding me, they were removing from the care process Tim’s closest friend, the only person whom he recognised. I was the one and only person who could provide a link with past experience and ensure continuity, which social services and the NHS claim to be greatly concerned about.
I made no headway with my complaints to the council, and in the meantime, Tim died. I resolved to take matters to the Local Government Ombudsman. The case with the Ombudsman lasted three years. He found that the council had acted inappropriately with regard to the ‘significant other’ and directed the council to rewrite two of their key policies and to inform him of the ways in which they intended to disseminate and implement them. However, the Ombudsman failed to follow this up and I had to pursue him. When he investigated, he found out what I already knew – that the new policies had not been implemented.
I believe it is vital the recent Mental Capacity Act is contextualised for LGBT people and that its basic principle, namely, that the interests of the patient are always paramount, is enshrined in all policies of councils and NHS trusts. Recognising the vital role of the ‘significant other’ in all care matters is part of this. Short-circuiting this with arguments about confidentiality is totally unacceptable. Confidentiality must operate in the interests of patients and not against them.
When gay men have 40 years of shared history, it is very special. I shall always regard my friendship with Tim as one of those rare, transforming friendships. There was lots of joy, even in the depths of dementia. However, sadly, the horrors of watching a loved one tormented and falling apart with dementia will always be with me, as will the way we were treated by the family and by the authorities whose duty it is to care for vulnerable people.
Most people have some form of opinion about how they would like to be treated at the end of their lives, regardless of their identity or background. For LGBT people in particular, your identity might have an impact on the treatment and care you would like to receive.