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Caring

CARING FOR A PERSON WITH DEMENTIA CAN CAUSE FEELINGS OF ISOLATION - INCREASING WHEN PEOPLE DON'T UNDERSTAND A DIFFERENT LIFESTYLE.

The following article, by Roger Newman, led to the setting up of the Alzheimer's Society's Lesbian and Gay Network.

Following his redundancy, we simply thought that David's erratic behaviour was an understandable reaction to a very traumatic event. But, 18 months later, this interpretation no longer made sense. He was starting to write letters, the sense of which was difficult to unravel, and his telephone calls were not just incessant but were creating an embarrassment which led to an unnerving increase in answer-phones amongst our friends. I wrote to his doctor saying how concerned I and others were about him, but gay partners are not the most recognised of people within the medical profession and I was told that no action could be taken unless David himself went to the surgery with his problem. But David didn't seem to understand that he had a problem. So no action.

David' s behaviour became more bizarre. He wandered into people' s gardens and sometimes looked into their windows and through their letterboxes. He still does that and, understandably, people are alarmed if they don' t know him. He lost interest in the house and the garden, he couldn' t cook and his personal hygiene was suffering too. I tried and tried to get help but my status was always a stumbling block. That is until I learned to start off every letter and conversation with the statement: 'I have power of attorney over his affairs' . That certainly opened some doors and still does. Eventually David had to be sectioned. Putting him into the ambulance that day ripped me to bits. He had already lost some of his power of speech and I could see the anxiety in his face. The diagnosis of Alzheimer' s followed but, of course, they wanted to test him for HIV as well. It wasn't Aids-related dementia but do heterosexuals automatically get tested too? Each new situation relating to his medical condition has led to acknowledging his and, by association, my own gayness. You get to the point where it just isn' t important who knows but you also learn to be like the rhinoceros when relating to others: gentle but rather terrifying when roused.

David is now in a residential home. Finding a place for a 56-year-old has not been easy. I wanted him to be near me and also for him to have the maximum amount of freedom possible for as long as possible. He comes down to the house regularly, still walks into people' s gardens, still frightens some, and this leads to complaints. But increasingly people in the neighbourhood know him and respond sympathetically. Often they ask outright or behind my back why I' m caring for him and that means having to 'come out' to another handful in the area. The gay community has been fantastic. They deal with David when I try to escape for a few days, ensuring that his unquenchable appetite is met and that his confusion is not compounded by my absence. When I am down and tearful they provide a hug, a meal, a glass of gin and, most importantly, solidarity.

David' s powers of communication are declining quicker now, but he can still say 'I love you' . He is completely incontinent and needs changing a number of times per day - the total antithesis to the fastidious person I first met 27 years ago. And, through it all, there are still glimmers of the wonderful original, and they are enough to stop me from letting go.

Roger' s partner, David, died on 16 March 2000.

What is Dementia?

Dementia is a term used to describe various different brain disorders that have in common a loss of brain function that is usually progressive and eventually severe. There are over 100 different types of dementia, with Alzheimer' s disease being one of the most common. Symptoms of dementia include loss of memory, confusion and problems with speech and understanding.

Most forms of dementia cannot be cured. There are some drugs available that appear to alleviate some of the symptoms of Alzheimer's disease in some people. The Alzheimer's Society estimates that there are currently over 750,000 people in the UK with dementia.

Contacts

The Lesbian & Gay Network

Part of the Alzheimer' s Society - supports LGBT people affected by dementia; carers and sufferers.

www.alzheimers.org.uk/gay_carers/index.htm

Alzheimer' s Scotland

If you need information or emotional support on any issue to do with dementia, you can call the Scottish 24 hour Dementia Helpline:

0808 808 3000