LGBTs and Dementia 5

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.

LGBTs and Dementia 4

The diagnosis of any serious illness is a huge challenge for any of us whether LGBT or not, however  the one significant feature of our situation remains that we are more likely to have to cope with it alone – the majority of us are single. So for the LGBT person making a Will and creating Power of Attorney is not just important but surely essential. For the person diagnosed with dementia,  to say clearly and precisely what their future care should be like, is so important and it is wise to do it as soon as possible. For some LGBT people past relationships with family may not always have been happy and it is wise for everyone, both relatives and friends, to be clear what one’s wishes are and thus avoid any conflict. Here are some case histories:-

When Joan’s dementia diagnosis was confirmed, both she and her partner were somewhat startled to receive renewed interest and visits from her long separated family and both doubted their motives.

When Peter said quite clearly how he wanted his care to be conducted, his family intervened and eventually went to court to contest the ‘rightness’ of his caring situation; fortunately they were unsuccessful.

There is also surely a need for advocacy services tailored to meet the needs of single people, like LGBTs, who, not having the support of partners and without close family ties behind them when making applications and responses to various agencies and government departments, might need  assistance.  

Fortunately we now live in a world where dementia care is more widely available and effective but, however well intentioned the provider may be, there remains for so many Lesbian and Gay people a feeling that they are different and this makes incorporating them into established care situations difficult, and for some, impossible. Consider again those defensive walls which have been created because of past attitudes to sexuality. What those walls have done is to enable us to construct a distinct and separate world. It is a world where a gay radar has been created so that we can recognise other’s sexuality without a word being said and without making too many mistaken assumptions. It is a world where, certainly for men, and to a certain extent for women there is even a separate language – talk to a gay man about ‘cottages’ and you have entered an entirely different universe of discourse. It is a world where our appearance and manner of dress can say a great deal about behaviours and choices. It is also a world where our cultural interests have a direct relationship to our sexuality. All these factors and others have a significant bearing on the value of the support which providers might give to LGBT people, and not to consider them would be a mistake and a failure of personalisation. For example:-

Pat’s local dementia group has a monthly singalong event which is fine for those who find singing along to World War 2 songs enjoyable, but since she has been a professional singer and still knows what she wants from singing, wild horses couldn’t drag her along to take part in that activity.

David loves film and the dementia group has occasional showings, but the assumption has been that as a man he wouldn’t want a Judy Garland film or a viewing of Priscilla Queen of the Desert and in his case that assumption is wide of the mark.

Similarly watching TV can be a valuable resource for occupying those with dementia but don’t assume that stereotypical men’s and women’s programmes are likely to be the choice of Lesbians and Gays.  It is a gift for LGB and T people that  advances in technology such as ipods, ipads and downloadable films can ensure that activities for those with dementia do not have to consist of a one size fits all experience but instead can be directly tailored to the personal interests of each one. This is where local LGBT groups could service the needs of their carers and those with dementia to supplement other care provided elsewhere.

When we consider  the nature of our relationships and those deeper feelings surrounding our sexuality, dementia care ignores them at its peril:-

As Brian’s dementia deepened it became clear that he really did need residential care, but from the moment of him entering the home he started to become a different person. Gone was the hugging and kissing one always received on meeting him. Gone was the outrageous campery which had always been hilarious to his friends; and gone were the stories, which even at the 50th recounting were a joy to hear. The residential home didn’t intend to have that effect on Brian but its failure to understand and encourage him to give vent to the depths of his sexuality had effectively forced him to give up on being the real person he was.

Then there was Jim who, previously always kissed his partner wherever they were and now, with the onset of dementia, the hugging and kissing actually increased, but his partner now felt uncomfortable about this  because effectively they were out of their private world and now in a different one. The partner felt that they might have to temper their behaviour, not for their own sake, but for the sake of others around them.

Then again Jennifer and Brenda, both residents in a care home gradually became inseparable and walked around hand in hand all day. The home owner said that the one believed the other was actually her husband, but when they were found in bed with each other, Jennifer’s family intervened and demanded that Brenda be moved to another home.

 There are other challenges too, not least for example where it is suggested that as many as 1 in 12 gay men over the age of 60 may be HIV positive – this has repercussions for health provision but, since HIV dementia can exist, it also provides a separate challenge for dementia care.

Then there is the matter of sexual activity related to those with dementia and whether consent is really possible as the condition develops. It is surely right that some have not shied away from dealing with the issue and there remain unanswered questions. Whatever the outcomes might be it is surely right that homosexual activity should be treated on an equal basis as heterosexual activity.

Out there, throughout the UK, it is highly likely that there are at least 40,000 LGBTs with dementia but where are they? Only a proactive approach to reaching all communities will ensure that this group is not left uncared for.

 

 

 

 

 

LGBTs and Dementia 3

 I could tell that Jill, a lesbian carer and a friend, was anxious as she attended her first carers support group. For a start  I knew it was going to be necessary for her to ‘come out’. Everyone would want to know who she was caring for and that meant admitting her sexuality with the ensuing risk that not everyone might react in the best way. I remembered a carer once rounding on me when I spoke about my partner and saying “but I am talking about my HUSBAND”.

So the LGBT person with dementia and any LGBT carer will be faced regularly with deciding whether to ‘out’ themselves and even whether to out the person they are caring for. Since it is likely that there will be contact with relatively large numbers of health professionals and domiciliary carers  ‘coming out’ may become too regular a challenge for comfort but I remain convinced that doing so is the best way of ensuring holistic treatment.

However when we admit our sexuality we have said something fundamental about ourselves. It is not enough to say to us ‘ it’s ok, it doesn’t matter, we treat everyone the same’. Instead engage with us. Ask if there is anyone special in our life; our friends; and our culture. Don’t be afraid to ask questions about our sexuality, if you don’t know the answer. Any information which enables you to serve us holistically has got to be good. Your positive proactive response will also help us not to be fearful and defensive, and having to hide things like photos, magazines and all the other ‘incriminating’ evidence from our ‘gay’ lives.

Not for nothing then have some LGBTs looked for LGBT specific service provision as a way out of this challenge and understandably some LGBT groups have set up befriending schemes, support groups and private domiciliary service organisations to counteract a feeling of being left out or ignored. The fact also remains that LGBTs are good at setting up ‘families of choice’ and there are numerous examples of wonderful loving care being provided in such situations. We have got used to making up for what society does not offer.

What else then might our situation be saying something to those working in the field of dementia care?  Well for a start, there should be a constant reminder that gay or straight dementia does not discriminate and that there are LGBTs out there with dementia. Yet, and perhaps just as importantly, with the numbers now having dementia there is a new sense of all of us being in this together and the ‘all’ relates to our society as it is and not how we would prefer it to be. Those affected by dementia are therefore not just devoted happily married couples; white and middle class; surrounded by concerned and devoted families; and mostly prosperous. They are also single unmarried persons; they are widowed persons living miles away from family;  they are childless persons; they are divorced persons; and those dependant on benefits; and BME people; and persons from fractured families; and also, as you might expect,  LGBT persons too. The list then is almost endless and for all of them dementia does not discriminate. Our system of care, therefore, needs to reflect this real society

 

 

 

LGBTs and Dementia 2

When my partner was diagnosed with a life threatening condition, I was not with him when he was given the news, though I wish I had been. Later, however, we were able to sit down, hold each other, and then talk about and plan what we were going to do. I was able to assure him that I wasn’t going anywhere; I was in it with him, for the duration.

We were lucky, we had each other. However that is not the case for the  majority of older LGBTs who are not in a relationship and are more likely to live alone. They might have someone special with whom they can share and receive support from, but essentially they are alone shouldering the news. Their immediate families might step in and help, but for us, at our age, the relationship with the family might not always have been of the best; I still hear of older LGBTs who, having ‘come out’ ,were rejected by their relatives, and that state has remained for the rest of their lives.

Giving the diagnosis of a serious condition is a challenge which GPs do not always recognise as the crisis it is for the patient, and which requires immediate help and support. Some more enlightened GPs, however, do provide information packs which give details of services, support groups and other relevant information,and which will later probably be a life saver. However I would bet my shirt that such packs wouldn’t be likely to contain details of LGBT support, either because the issue hadn’t been considered; or wasn’t immediately available; or, more likely, didn’t exist in the first place. Remember we are at least 5% of the adult population – there are a lot of us!

So, consider. Anne is living alone, has been diagnosed with a form of dementia, and is not ‘out’. What now? The best answer might be to ‘come out’ and thus ensure that all of her service and health provision will be  given with the added information that she is a lesbian. In that way there is a hope that she will be treated holistically, with the acknowledgement by service providers, that her sexuality is fundamental to who Anne really is. However, since Anne is faced alone with yet another issue to be sorted before her dementia becomes more profound, the chances are that she will stay ‘in the closet’.  She will keep the matter secret and, from now on, will silently accept that she will remain, or become, an honorary heterosexual.

Not surprising therefore that so many service providers, health professionals, residential home workers will say that they haven’t had to deal with an LGBT person and the unspoken assumption follows that it isn’t an issue.

 

 

LGBTs and Dementia 1

Enter my world and largely the world of those of us who are in our 70s. Yes I know there are some of us who would say that they were never in the closet but for the most it wasn’t like that. We grew up in a world where newspapers and family chat assumed that being ‘gay’ belonged to others; to Piccadilly and Soho; to the secret bar and club; to comedians and theatre actors and actresses; but not to us.

At times there would be the odd scandal which would break out. Scout masters with their troops, choir masters with their choristers, peers or MPs with guardsmen, but that was them, not us. Not our family.

So what you knew was going on within you had to be kept firmly in its place. Perhaps those feelings might go away; perhaps it is a phase, some of us thought. Marriage might cure it. No point in talking about it to anyone, they might tell and then you would almost certainly lose your job.

The arrival of the wonderful world of gay rights and legislation protecting LGBTs was an enormous relief but the trauma of earlier years takes a lot of undoing. You might have relationships, friendships, and work situations which had all assumed a straight life and coming out to that lot takes time and, in some circumstances not a little courage. Better then to start a new life away from them all?

So we appreciated our new freedom but for many of us we were ‘out’ and ‘not out’ at the same time. Some of us might now fortunately be in LGBT relationships but we still carried with us the baggage of the repression of previous years. There might even be a fear that this new freedom might not last and our world might regress back into repression and the reports of homophobic violence were scary enough. So we learned to build defensive walls around ourselves so we could be safe and we could decide who would be allowed to know our secret.

Those are the experiences and feelings which LGBTs bring to the event of being diagnosed with dementia. Before you blandly trot out, ‘we treat everyone the same’, please understand what that news might mean to us – it could be different to your experience; but more about this next time.