LGBT Carers Group newsletter, January 2006

Note: Highlights of this edition are available online. Click on the article titles at the bottom of this page to read each article. A downloadable pdf version of the newsletter is also available.

Article by a Northern lesbian woman carer

'You've been unlucky.'
'You've been unlucky.'
'You've been unlucky.'

The GP's words still go round and round my head. There still seems no other explanation.

As soon as I met Dory and realised how important she was to me, I knew that we were together for life. Without sounding too dramatic, it seemed a kind of destiny, and we were both happy with that. From the beginning we always shared all our income, with joint bank account etc, and we started to live together pretty soon after we met. We've just had our 25th anniversary with over 80 friends dropping into the house over one lovely long Sunday. My heart still lights up when I see her at the end of a day. We are soul mates, in tune with our interests, politics, and approach to life. We have grown more similar over the years. I imagine us like two trees, separate on the surface but with roots completely intertwined beneath. That's how it feels.

Not to say we haven't had difficult times too. But, looking back, I realise that some of those difficult times were really to do with the beginning of Dory's illness. About six years ago, in her early 50s, things began to change - she started losing things; she became 'irrational' and unable to organise herself; she forgot how to do things which previously she knew how to do; she increasingly found things too much, and new situations were a real trial. This was when the power balance in our relationship began to change. Neither of us was happy with that - it gave me too much control and she began to feel inadequate and always in the wrong.

To cut a long story short we were given a diagnosis of Alzheimer's in April 2004, a fact which Dory forgot pretty quickly. I was left feeling bewildered and bereft. Dory decided the encounter with psychiatric services was too traumatic and she declined further contact. I was left to pick up various pieces and also took the decision not to pursue it with her. I'm still in a situation where she doesn't know the diagnosis - though she knows something is very wrong - and I collude to protect her.

When friends started to tell me that they knew something was wrong, I decided to let everyone in our circle know. This was a relief for me, sharing a burden carried for so long alone. The deceit is awful after a lifetime of sharing everything and yes, I am moving towards Dory getting help with knowing. It feels like I know that someone has been condemned to death and I can't bear the horror and fear of them realising, so I pretend. Maybe this says a lot about my own attitude to dementia but I also know how devastated Dory will be - it feels like we are losing our lovely life together, and, coming up to what we hoped would be an early retirement, losing all the things we said we'd do.

I'm bearing an unbearable situation because that's what you do when you love someone. And I'm quite good at marshalling support - counselling, contacting other carers, help from the Alzheimer's Society - a great relief to hear there was a gay section. The first worker I met from the Society said: 'Well, we don't discriminate, you know', when I asked about other gay and lesbian people, meaning I'd be perfectly acceptable to the local support group. She didn't see how this missed the point. It's just a relief to talk to other gay people and I don't see why we should have to analyse why this is the case.

Dory is at the stage where she can get around independently if she knows where she's going. She wouldn't think it necessary to go to a 'group' or understand why she was mixing with other people with dementia. But I am increasingly finding 'normal' situations are difficult to manage. In the last few days Dory has stormed out of a supermarket in tears, come back in a few times, stormed out again, with me unable to bring her round (too many people, too much unfamiliarity). She has been to a new discussion class with a friend, and upset class mates by talking over them such that the tutor has rung up to discuss it (Dory felt that she'd had a lovely time). She watched the children's video 'Finding Nemo' with friends, not being able to follow the plot at all. With friends this is fine; with people who are not aware - well, I no longer feel embarrassed. I also find it amazing what people don't notice in public and also how kind and understanding they are when they do notice. But it also means I have to make fine judgments each day about the right thing to do. These include deciding whether to book a holiday where we might be with people we don't know, knowing how much Dory can cope with, whether to ask her to do certain things around the house. Then she surprises me by taking the initiative - organising the chimney sweep, getting the boiler serviced - but at other times dissolving and clearly not coping. I never quite know what I'm coming home to in terms of her emotions and mood, but also in terms of what I'll find - like the day when she decided to defrost the freezer (which happened to be full), took most of the food out but then forgot she'd started that task and happily went on to something else. Let's just say we had a lot of strange combinations to eat up over the following few days.

I'm also discovering the petty discrimination which still exists, such as losing our entire accumulation of no claims bonus, because we changed our car insurance from Dory's name to mine. You can only do this if you are married, I gather. We put in an application for incapacity benefit and were told that our partnership couldn't be recognised - fine, I guess, as that meant my income wouldn't be taken into account in the decision. The person at the end of the phone cracked me up by saying how sorry she was at not being able to recognise our relationship and ending the call by saying, 'You two take care, now.' Dory was turned down for the benefit anyway - not enough NI contributions because she hadn't worked for so long ...which was why she wanted to claim the benefit. All our household bills are in her name - I can't remember why - and unless you're a Mr or Mrs when you make an enquiry, they want to know who you are?

Unlucky? Well, yes. I'm on a journey I didn't want and I don't know where we go next. I know it will probably get worse and I can't imagine living without Dory. The same GP told me, 'We'll be looking at residential care in three or four years' time.' Well, we'll see about that. 'You've got to think of yourself too,' she said.

It would be good to meet other lesbians or gay men caring for a partner with early onset dementia. I guess we're a minority within a minority and it would be a stroke of luck to find one. I was lucky all those years ago to meet Dory and we've had relationship which some people never achieve in their entire lives. I could do with another stroke of good luck now.

Dory's name has been changed - not because we are not 'out' about being gay but because we are not out about the diagnosis. For anyone who saw 'Finding Nemo', you'll know that Dory is the fish who couldn't remember anything.

* Since this article was written, some of the issues may have changed owing to the introduction of the Civil Partnesrship Act 2005.