Carers are the salt of the earth. Their devotion, sacrifice, sheer hard work, frustration, exhaustion (and guilt too) can only be appreciated fully by those who have been there.
Caring for someone with profound dementia Is like, and also not like, caring for those with other life threatening conditions, but having also cared for a partner with mesothelioma, I know only too well that dementia care for me was the most demanding of the two. I also believe that the LGBT carer can face extra burdens, and I will try to identify some of them.
My caring experience in the field of dementia is now way back into the past but the memory still affects me deeply. When you are identified as a partner it is immediately acceptable but as a friend, or as some significant other your role can be seen to be less significant. This is sad since the majority of us, in our community, are not in partnerships and are most likely to live alone. Thus we often create a family of choice, which can be as strong and as deep as any blood relationship and service providers need to recognise this, without question.
My partner spent 8 years in a residential home. His dementia was so profound and his behaviour so difficult that I could not possibly care for him at home. So I chose for him to live in a care home very close to where our house was and where I could visit each day and, also usually, where I could bring him home for an hour or so.
The care home was warm and friendly and did their best for both of us but for me as the carer there was another feeling which I believe is not unusual for a gay man of my generation. It was a feeling of not being ‘of them’ of being ‘different’; of them not being ‘my people’. My present husband says that I come alive when we are in LGBT company and that is because I feel so relaxed, at home, and without any need to explain, relate or defend who I really am. I see us therefore as ‘different’ but nevertheless ‘equally different’. Thus, when some gay friends of mine placed a relative of theirs in the same home, for some reason, I suddenly felt more relaxed and relieved; I was no longer there alone. This ‘aloneness’ is something I have seen in other LGBT carers, even when they are lucky to be surrounded by friends.
The cultural gap, for us, can also be huge and when I see filmed extracts of older people living in residential homes I look on with dread (though this feeling is probably not unique to LGBT people). Perhaps we really do need LGBT care homes where we can be fully ourselves.
Have a look at my chapter ‘Surely the world has changed’ in the excellent book ‘Telling Tales About Dementia’, published by Jessica Kingsley. There are also other chapters there written by LGB carers.
So what kind of experiences have I dealt with when supporting LGBT carers? Here are a few:-
The gay man caring for someone somewhat older that himself and wanting reassurance that his need and search for sexual activity was not a rejection of his partner, nor to be seen as avoidance of his caring role.
The lesbian woman caring for two parents with dementia and selling her house and business so she could move in with them and care for them, and her deep need for other lesbian contacts in a new place where she knew no one.
The gay male couple trying to care for a mother and now experiencing a crisis within their own relationship because of conflict with other relatives and a feeling by one of them of being sidelined.
The lesbian woman wanting to continue within her deeply satisfying job and sometimes having to choose between job demands and meeting the needs of her partner.
The gay man with developing dementia, and not having power of attorney, now ‘at the mercy’ of a family who cannot fully accept a caring role for him.
The lesbian woman and the only unmarried person in her family now assumed by them that she will naturally fall into the role of carer for her father.
The trans woman with a historic problem of opposition from her mother over her transitioning and now finding herself, the only child, as the sole carer of her mother.
The Chinese gay man in a relationship of over 20 years with his friend, now with dementia, and of whom his family knew virtually nothing. He was ‘just a friend’.
The lesbian woman now caring for her partner and neither of whom had ever publicly acknowledged their sexuality, and now having to deal with service providers who might well ask questions.
The gay man in a relationship here in UK and with an American friend who has now decided to return to the USA to be with his family, leaving his friend bereft.
And so the examples can go on. Each one takes for granted those challenges which all carers of those with dementia have to cope with, but also acknowledges additional ones relating to the sexuality of the carers or cared for. Being treated the same as everyone else only begins to get to the root of the need for holistic support.