My way of letting off steam!

Archive for July, 2014

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.

Welcome to my blog.

‘When I use a word, it means exactly what I choose it to mean’ – Humpty Dumpty.

 

Say it with a stern face, with a smile, with a loud voice, or with a sincere voice and a word achieves a new significance.

 

I was reminded of that last night during the First Night of the Proms concert in the Royal Albert Hall. The work being performed was Edward Elgar’s ‘The Kingdom’; a quietish meditative work, which didn’t thrill me.

 

However what got me was the use of some texts from The Acts of the Apostles which were nothing more than statements and not of theological worth, but in Elgar’s  hands given the right facial appearances from the performers, achieved a mock significance and so became comic.

 

Next time I will try saying ‘the time is 1 o’clock’ in a suitably pious way and add a tune, but it wont achieve the significance I want because my name isn’t Edward Elgar.

 

There’s a lesson here.

 

 

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