Wednesday, 12 November 2014

Women's Identity: Who Cares?

Two thirds of people living with dementia in the UK are women, as are the majority of dementia carers, both family and professional.  It's an issue that affects women disproportionately.

In summer 2014 I took part as an interviewee in Dementia Women (a project funded by the Joseph Rowntree Foundation and run by Innovations in Dementia and the Social Policy Research Unit at the University of York), which examined women's experiences of dementia in the wider social, cultural, and emotional sense.

I was invited to speak at the launch of the booklet (written by Helen Cadbury with photography by Eloise Ross), which aimed to spark debate and raise awareness of these often hidden stories.  

For me the greatest tragedy of dementia is its effect on identity and relationships. And I would suggest that society more readily grasps the loss of identity experienced by men – living with dementia or in a caring role - because it equates the man’s self with his public role: doctor, engineer, lawyer, sportsman, driver, head teacher, famous author.  Something active and respected, the loss of which is visible to the outside world.

Of course there are women in these same public roles today, and maybe by the time they and their children have aged, expectations will be more equal; but older women already living with dementia now (and their female carers) are less likely to be identified by public status than their husbands, brothers, or fathers. 

Read any news headline and a woman is still more likely to be described as “wife and mother, 32” or “grandmother of four”, regardless of profession and interests. Unless, of course, she’s a sex worker – which will be deemed worthy of mention, if she’s a victim of violent crime.

In 2013, there was an outcry on social media when the New York Times published an obituary with the opener:

Mum (right) with her friend,
Jean
“She made a mean beef stroganoff, followed her husband from job to job, and took eight years off from work to raise three children. ‘The world’s best mom’, her son Matthew said.  But Yvonne Brill, who died on Wednesday at 88 in Princeton New Jersey, was also [my italics] a brilliant rocket scientist…”

The following year, Amal Alamuddin was feted in the media, not for her achievements as a top international human rights lawyer, but for marrying George Clooney – and, of course, for losing weight. 

Around that time, Mike Leigh's film, Mr Turner, opened, in which Timothy Spall gives a bravura performance as the celebrated painter.  Like The Invisible Woman, Abi Morgan’s adaptation of Claire Tomalin’s book about the relationship between Charles Dickens and the young actress Nelly Ternan, 'Mr Turner' shows that male genius is often achieved at the expense of female sacrifice.  It’s a familiar image: the driven artist or pioneering scientist, feverishly toiling in his studio, laboratory, or office, while his wife or lover brings him a drink, tidies the house, and keeps the children and creditors at bay.

Now intellectually, we know this is an outmoded stereotype; we know women can do these things too and some most certainly do.  But on an emotional level, we still largely expect women to be the nurturers, the “supporting cast”.  Their identity, in the public consciousness is not autonomous - even if they are high-achievers - but bound up with those they care for. 

Mum, backstage at
Manchester Belle Vue
So when a woman begins to lose her faculties or starts to withdraw from professional life to care for someone else, it may pass without much notice.

Coverage of dementia in news stories and government edicts usually focuses on financial constraints: working hours lost to the economy, the cost to the NHS.  These are tangible things that affect the “male” world of politics and finance.  But what of the cost to the individual?

Women’s identities, the greater bulk of their lives, are often hidden in the domestic realm, like the body of a whale, showing no more than a dorsal fin above water.  So when they begin to lose grip of who they are, who notices?  Who cares?

And if we are so much the product of our relationships with others, what happens when shared memory erodes, and those bonds too are gone?

My mum was a singer, a teacher, chatterbox, comedienne; a lover of pretty things - perfume, jewellery, music, animals – and most of all, of me.  Who mourns the loss of all that?  Only me.  And who am I now, after more than a decade of watching dementia take her?  Single, childless, back to square one in my career; unknown even to the person who gave birth to me, to whom I have devoted those years.

Dementia is about much more than economics.  Yes, we need policy-makers to address the many financial and professional disadvantages it forces on women; but I hope this project – and all our collective efforts – will shine a light on the deeper losses of self that are felt by so many women behind closed doors.


Postscript: since publishing this post, I have written a play, The Things We Never Said, which explores these issues further, through the prism of a mother/daughter relationship. S
tarring Lia Williams and Siân Phillips, it was broadcast on BBC Radio 4 Afternoon Drama on 11 May 2017 and is available on BBCiPlayer until 10 June.

9 comments:

  1. Very interesting, important article. Thank you for writing it.

    Fiona

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  2. Thanks, Fiona. If you'd like to contribute to the Dementia Women project yourself, you can add thoughts/stories on the website, as per link in the post above.

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  3. Thanks for that hard on sufferer and the carer wish I had found this blog sooner

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  4. Thank you; so sorry you are going through all this too. You may find some of the archive posts from 2013 helpful.

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  5. Very interesting piece along with your article on the reluctance of the medical profession to formal diagnose dementia.

    My darling hubbie has parkinsons dementia which I been aware of as far back as 2009, but which which has still not been formally diagnosed in 2016, even though they have been treating him for over 2 years. Your posts about doing everything covertly really hit home with me. I am familiar with all of the behaviours that you have described in your dear mum, except for my Dh's memory is not as affected. Trying to live in someone else's changing reality, keeping them secure in their delusions, trying not to upset them and at the same time dealing with everyday life in the background, is so difficult.

    I sought counselling from my gp once and was referred to a psychotherapist who tried to help me change the way I thought and behaved around my husband! Much of the time he can look and act quite normal for the short visit to doctors and it's actually been hinted that I exaggerate his problems. Recently though, they have started to look at me kindly and ask have I managed to get anyone to help me cope!

    Right now I'm pushing with difficulty for a formal diagnosis even though there are no services available to someone my hubbie's age (mid 50's). But I feel I have to do something, even if it's just getting on a waitlist.

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    1. Hi, Bigmac. Thanks very much for your comments. (I'm replying in instalments, as this site won't accept one long post.) I really feel for you, and would urge you to persist in pushing for both diagnosis and practical support, although it is a huge hurdle. As I know to my cost, it's all too easy to find yourself struggling on alone behind closed doors for years, and then facing a crisis situation when options are even more limited and your own resources (emotional, practical, and financial) are further depleted.

      In 2010, I too had that same counselling experience via my GP! The problem is that, for funding reasons, NHS treatment (for anything) is aimed at acute conditions - solving finite problems in a short time-scale. The type of counselling most often given via a GP is therefore a short course of CBT (cognitive behavioural therapy; 6 sessions in my case), which aims to help a person cope with distress by changing their response to it, through learning to think differently about situations that provoke it.

      In my view, this is all very well if your problem is a destructive pattern of your own behaviour, coming from within; but if it is an overwhelming sense of frustration, grief, anger, loss, and helplessness caused by the practical and emotional challenges of someone else's behaviour (and their underlying illness at its root), being told to change your own attitude to remedy the situation can feel like insult added to injury. Feelings of distress in such circumstances are perfectly justified, and should not be stigmatised as an implied failure of character.

      While I did appreciate that short course of (NHS) counselling as an outlet to talk to someone neutral in confidence, I concluded that the emphasis of the sessions was unhelpful: what I truly and urgently needed at that time was some actual practical help with my mum - not being told to rethink my attitude to her psychosis and be more accepting of it! (Of course, that's not literally what my counsellor said, she was personally very sensitive and understanding; but within the parameters of the kind of therapy she was designated to give on the NHS, that is how it felt to me.)

      In my case (and probably yours too), I think the counselling situation was complicated by the lack of diagnosis for my mum. If dementia is not acknowledged and understood as the source of the challenge, what you are left with is an apparent "relationship issue" - with counselling being aimed at setting boundaries in the relationship and negotiating responses to conflict, where both parties are assumed to be cognisant and capable of change.

      (Continued in next post.)

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    2. (Continued from reply above):

      Back in 2007, I had previously sought self-funded counselling in response to a particular dilemma with mum. I spent several months talking that through with a different type of counsellor (person-centred therapy), in the course of which the answer to that specific question became clear. But looking back, the whole process was based on an incomplete premise. I remember saying I thought mum had "some kind of dementia-type behaviours", but because that was not acknowledged by anyone other than me, my counsellor was again not able to offer specific support for the dynamics created by a long-term, degenerative, perception-altering, and personality-changing disease.

      My local authority now enables self-referral to mental health services, but still offers only short-term CBT as counselling. A low-cost private alternative is to see a trainee counsellor at a psychotherapy college. I am now doing this myself and find it helpful just for the talking.

      I also sympathise with your experience of professionals doubting the extent of your husband's symptoms. In the years leading up to mum's move into residential care, when we were in desperate straits behind closed doors, she too would present well during appointments with the GP, and indeed during home visits from the Older Adult Nursing Team, whom I called in for support on various occasions.

      This is largely because she retained articulacy (and still does, even with very advanced dementia) and a convincing social veneer (banter); her dominant symptoms are paranoia, delusions, confabulations, and hallucinations, which are hard to identify in a 10-minute consultation or visit and without factual corroboration of the context. That's why I'm so keen for these symptoms to be more widely known and understood by both medical professionals and the general public.

      I don't know if you've read my twin posts, 'Confabulations, No Celebrations' and 'Truth or Lies?' (see links on right). If not, you may recognise issues there. In 'Truth or Lies?', I wanted readers (particularly social care professionals) to consider the effect on the family carer of some commonly advocated coping strategies - while these can be positive for the person with dementia, they can conversely be destructive for the other person, if that person is a long-term sole carer.

      When you say there are "no services available" for people with young onset dementia (in your area?), I'm not sure that's strictly true - although of course services are scarce in general, hard to access, and most often aimed at the over 75s. There is, however, a growing awareness of the particular needs of those with younger onset; if you are on Twitter, do follow e.g. Chris Roberts and Jayne Goodrick (@mason4233 & @jaynegoodrick), who were the subject of a recent BBC Panorama, Living With Dementia; Agnes Houston (@agnes_houston), Tommy Dunne (@TommyTommytee18), Kate Swaffer (@KateSwaffer) and look up Keith Oliver, who often speaks at conferences and campaigns. (If you follow and DM me on Twitter with your details, I may know someone who can help in your area.)

      Along with Chris, Jayne, and others, I am a member of a carers' advisory panel for the Royal Surgical Aid Society (RSAS), which is designing a national dementia carers' centre. It will be some years in the making, but it is an attempt to provide the kind of specialist information and support that is currently so lacking for those in our situation.

      All the best to you and your husband.

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    3. Young Dementia UK Young Onset Dementia Conference:

      http://www.careinfo.org/young-dementia/

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  6. See link to Young Dementia UK website on right (Help & Advice links)

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