Gay and Lesbian Carers

[LizP]

Hello Everyone,

This is my first post here, so please bear with me

My name is Liz. I'm a lecturer in social work and am currently working on a study that is exploring the experience of dementia from an exclusively gay and lesbian carers' perspective.

Whilst carers' experiences generally have received some research attention, some minority groups, including gay men and lesbians, have been largely left out of the picture.

I have recent practice as a Specialist Social Worker for older people with mental health problems and am very aware that professionals rarely, if ever, consider gay and lesbian issues as part of their day-to-day interactions with people. I’m hoping, therefore, that this work will complement the work being done by members of the gay and lesbian carers' network to bring some of the issues facing gay men and lesbians with dementia and their carers to a wider audience.

I’m keen to talk to gay men and lesbians who care (in whatever capacity) for someone who has dementia. I'd also love to hear from you if you too are gay or lesbian and have the diagnosis yourself.

I'm wary of posting great long reams of stuff so, if you'd like to become involved or just want to know more about the work, do let me know.

Many thanks,

Liz.

 

[connie]

Hello Liz, noticed that you have had no replies.

Whilst can understand where you are coming from, in my opinion, most people are more concerned with 'caring' than gender roles. Do not mean to offend.
Just felt someone needed to acknowledge your post. Connie

 

[Brucie]

Hi Connie
this one passed me by and I didn't spot it.

Hi Liz
I can't help you from experience, but at last years Alzheimer's Society Conference I was on a panel that included someone from the Alzheimer's Society Lesbian and Gay Network http://www.alzheimers.org.uk/Gay_Carers/index.htm. [I know you mentioned this in your message, but in case others don't know of it]

He was very experienced in caring and I think helped set up the network. He may well be able to point you in the direction of carers in this area.

I agree with Connie, mostly we talk about carers and loved ones here. The only time gender comes into it is generally when we realise that it is mostly females who get most involved in the caring role, whoever is the person with dementia.

There are many exceptions to that, of course.

Best wishes

 

[LizP]

Hi Connie and Brucie,

Thanks for responding.

I perhaps should have been clearer in my earlier post in that my research is now nearing its conclusion - but it could always be improved by additional data.

I've worked closely with the Society's Gay and Lesbian Carers' Network (including the person you recently met, Brucie) over the past few years to develop a rich seam of interview data which suggests that, whilst many gay and lesbian carers feel, as you point out, Connie, that the 'caring' for someone with dementia is most important, the context of people's lives can have a huge impact not only on their experience of the condition, but also their experiences of service provision.

It is perhaps difficult, with the greatest of respect, to appreciate the difficulties of life for some older gay and lesbian people.

Imagine, for example, that you felt unable to make explicit the nature of the relationship with your loved one to those engaged with you in the caring process, or that each time you were presented with an unfamiliar situation (such as an assessment or doctor's appointment) you had to explain who you were and what your involvement with the person with dementia was. For heterosexual couples this information is taken for granted, never questioned and wholly accepted - quite the opposite for gay men and lesbians.

It's more than likely that numbers of people already posting on the forum here will not be heterosexual, given that there are probably some 35,000 gay or lesbian people with dementia in the UK at present. They may have read this post but feel unable to respond for fear of a negative response from other members.

It is because we tend to presume that sexuality is not important in the context of caring that it was necessary to develop a support network for people who felt unable to access (or felt they would be unwelcome in) support groups that presume and privilege heterosexual relationships.

Once again, thanks for responding, it's good to know there's someone out there in the ether

Very best wishes,

Liz.

 

[Brucie]

It is perhaps difficult, with the greatest of respect, to appreciate the difficulties of life for some older gay and lesbian people.

I'm not going to say that any experience is worse than any other, but I could equally say

It is perhaps difficult, with the greatest of respect, to appreciate the difficulties of life for younger couples where one partner has early onset dementia.

I'd guess that Norman could come in with the situation vis-a-vis older couples.

Dementia is a bummer for everyone, and each situation is unique unto itself.

By the way, I'm not underestimating the additional challenge for gay and lesbian people. Many friends who were most caring to us as Jan's dementia worsened were our friends who happened to be gay.

Just my opinions, of course...

 

[LizP]

"Dementia is a bummer for everyone, and each situation is unique unto itself"

Thanks Brucie, a much more succinct way of saying what I was trying to get across.

Liz.

 

[Norman]

Dementia is the biggest bummer in the world.
But young or old or whatever it is equally sad for all concerned
Norman

 

[Lynne]

It is perhaps difficult, with the greatest of respect, to appreciate the difficulties of life for some older gay and lesbian people.

Imagine, for example, that you felt unable to make explicit the nature of the relationship with your loved one to those engaged with you in the caring process, or that each time you were presented with an unfamiliar situation (such as an assessment or doctor's appointment) you had to explain who you were and what your involvement with the person with dementia was. For heterosexual couples this information is taken for granted, never questioned and wholly accepted - quite the opposite for gay men and lesbians.

It's more than likely that numbers of people already posting on the forum here will not be heterosexual, given that there are probably some 35,000 gay or lesbian people with dementia in the UK at present. They may have read this post but feel unable to respond for fear of a negative response from other members.

It is because we tend to presume that sexuality is not important in the context of caring that it was necessary to develop a support network for people who felt unable to access (or felt they would be unwelcome in) support groups that presume and privilege heterosexual relationships.

Liz, do I understand from the above that your enquiry was in fact limited to gay or lesbian carers who were caring for their partners (i.e. not those gay persons who might be caring for a parent) or do I misunderstand? Just curious ...

I totally agree with Connie's comment

most people are more concerned with 'caring' than gender roles

I think I can probably count on the fingers of one hand the number of 'negative responses' of any kind that I have seen on this board.

 

[LizP]

Hi Lynne,

I'm keen to talk to gay or lesbian people who care for anyone who has dementia, be it a partner, parent, sibling, friend or other significant person in their lives.

Cheers,

Liz.

 

[Dave W]

Speaking purely personally

I'm assuming that most people that have read my posts already are aware that I'm gay, and I live with my partner. (And I'm sorry if I just shocked, surprised or offended anyone.)

Looking back over the events since it first became apparent that my mother 'had a problem', I can't think of occasions where my sexuality seems to have mattered. It certainly doesn't appear to have been a problem to anyone on the boards here (another reason to be grateful for the existence of TP?), and none of the professionals that I have dealt with (hospital staff, consultants or residential homes) seem to have the slightest problem with it: my partner has visited Mum with me in each context, and came with me when we toured local homes. Any eyebrows that might have been raised have obviously been raised behind our backs. In the context of her dementia, my impression is that my sexuality has not been a factor.

Whether her dementia has been a factor in my life as gay man is probably a different question, although I'm not sure it's the one you're asking. (Always being one who's keen to avoid stereotypes, I'm not sure how I feel about the one that labels gay man as more likely to be sensitive and caring. Or being devoted to their mothers, to choose an even more common example: personally, I was very much my father's son.)

The stresses of dealing with the onset of her condition has obviously placed our relationship under strain, as it's difficult sometimes for my partner to understand how I'm feeling, but I can't put my hand on my heart and say that's because he's another man. I suspect any heterosexual couple in the same situation would face the same issues. If there is a possible issue here, it may be that gay men may not live conventional family lives (and no, I'm not about to start using phrases like 'pretend family') and that their lives may not therefore give them the same degree of experience of dealing with distressing emotional issues within close families. But only may be. We come from 'conventional' families, after all.

On the flip side, some gay men have lived through the dilemmas and stresses of friends with HIV and have faced up to the fact of loved ones and close friends having terminal progressive illnesses (one of my closest friends has lived with the virus for 15 years, and I went to a few more funerals in my 30s than I hoped to). I'm not sure how useful a parallel that is, however. Gay men have, to varying degrees, acted collectively to support each other through the minefield of issues (education, prevention, treatment, buddying and so on) that have accompanied HIV. Dementia is a condition where the responses and actions are very much personal. Despite such a negative (and often virulently homophobic) press for so many years, society has ultimately given generously to HIV sufferers. I wish dementia attracted such a high profile and such a generous public response.

These can only be personal thoughts: I have no desire to be a spokesperson. But I suspect being an only child has been much more of a factor of my experience that being gay.

I hope this is helpful.

 

[Brucie]

Hi Dave
many thanks for your helpful post. Interesting the only child comment. I was - for many years, so consider myself an only child in some respects. However, my brother appeared miraculously when I was 15 so I also appreciate the other sie of that cake, being one of two children!

At the risk of offending you

(And I'm sorry if I just shocked, surprised or offended anyone.)

Don't be daft! We're all in the dementia maze together!

 

[Dave W]

Only children

Hi Bruce, and of course I'm not offended. As you say, we are wrestling with a riddle, wrapped in an enigma or whatever the quote is.

I'm aware we're straying off topic, but I suspect - where a parent is the sufferer - that number of (and relationships with) children is actually an important issue. I have other living relatives, but precious few and none that my Mum ever maintaining contact with. Being an only child in this situation is a lonely experience.

I'm also struck that I've read many postings on TP where the poster has siblings who aren't 'sharing the care', or where past relationships with the sufferer are an important issue in the present situation or predicament. I can empathise with that one too, as my relationship with my mother has never been what anyone would call 'rosy' - yet I continue to do what I can.

I'm very struck by a conversation with a friend last week: she said that we each act in caring as a result of the kind of person we wish to think of ourselves as being. I can see a great deal in that: I act out of sympathy and concern for a fellow being and one whose loss of independence and dignity is obviously very painful to her. Doing so goes some way to nobbling the 'guilt monster' that seems to lurk so large behind every carer.

Saying that I consider myself a sympathetic person because I'm gay does, however, seem a leap to far. The trouble with questions that are variations on "How has being gay effected ..." is that I've never been straight, so I don't have anything to compare it with. The only things I'm immediately aware of my sexuality being a barrier to (fatherhood, blood donation) haven't been things I've ever felt madly driven to do!

 

[Amy]

Hiya Dave,
Your mum has dementia, so does mine. You love her, I love mine. Your partner doesn't always understand because it isn't his mother, neither does mine. Social services and NHS drive you mad, do me too. As Bruce said, "We're all in this dementia maze together", and I feel so much better knowing that there are you and others out there that I can talk to.
Amy

 

[Dave W]

Hiya Amy

Why couldn't I say it that briefly? (Answer: I'm a windbag that can type fast!).

More seriously: my experience of interacting with others on TP is that caring for a dementia sufferer is a real leveller. TP seems to be a forum in which age, sex, class, sexuality, colour, race and the rest aren't at an issue at all. As online communities go (and I've been a member of a great many), it's also the one where disagreements seem the fewest. The presiding ethos seems to be very much one of mutual help and support without judgement. If we had the spare time, we should all run for Parliament

 

[Brucie]

Dave

I'm aware we're straying off topic,

Dave, the thing is that dementia invades every nook and cranny of the existence of anyone remotely associated with it, as carer, or patient. It is the nature of this that therefore, any post on here is likely to veer way off the initial course, and probably back again.

Sometimes it may seem harsh when jokes enter a serious thread, but that's how things go, if we don't leaven things with jokes, stories, worries, then we go stark staring bonkers.

TP topics are like life, fluid, and meeting the needs of those involved.

Hope I haven't over strayed my welcome

 

[Dave W]

Couldn't agree more

Bruce, you're entirely right - as you so frequently are. I'm too used to more formal forums where straying off topic gets frowned upon. As you say, in TP all of life is here - not just its participants but its aspects too. Including the humour - the most vital aspect of life in my own opinion. (Must be a family trait: in my Dad's last few days, he would always ask me to tell him dirty jokes. The nurses wondered why on earth there was bursts of cackling coming out of his hospital room at first. Once I explained, they were delighted to hear laughter and heartened that I was glad to make him happy.)

About time someone posted a good joke, I reckon ...