D for desire

They say that sex sells, and yet when it comes to dementia no one talks about it let alone advocates it. The idea of older people, and particularly those living with dementia, feeling sexy, desirable, thinking about, talking about or wanting physical intimacy is a subject rarely broached and even less likely to be explored.

Yet sex isn’t the preserve of the young. We focus on sex education for children, teenage pregnancy rates, sexual objectification in society, the implications of widely available porn and the sex lives of celebrities, yet how often does anyone consider the needs of our older generations. Society focuses on those of childbearing age when it comes to talking about sex, wrongly assuming that when someone gets older they simply trade their reproductive organs and sexual desires for a zimmer frame and a bus pass.

Bear in mind that many of the people living with or likely to live with dementia in the future are the baby boomers – people who knew a thing or two about procreation and what it involved. The swinging sixties, when the pill was first made available, hemlines got shorter and free love reined is historically considered a time when sex was reinvented, taboos were broken down and it became more mainstream. Meanwhile, the younger generations who are providing the majority of today’s care workforce have been conditioned to think that they are the true pioneers of the sexual revolution.

The truth is that as we get older we don’t automatically lose our sex drive. It may diminish, and for some people go completely, but to assume all desire to feel physically attractive or engage in intimate physical activity leaves every person over a certain again (and certainly by the time they are likely to need help with their care) is totally inaccurate.

The nature of dementia is often to return someone living with it to their earlier life, which can have very contrasting effects on their sexual response. For some people they may be living back in their teens and twenties, eager to look their best and try to attract a mate. They may have no concept of being in their 70’s, 80’s or 90’s, and instead may have a very strong desire to engage in the sexual activity of their youth.

Whilst some earlier generations were very sexually liberated, for others sex was something never spoken about and generally only considered to be an activity within marriage. Imagine the horror someone from that background might feel when they need assistance with washing, dressing or incontinence care, particularly if they don’t recognise the person providing that help. For them, being naked may make them feel very uncomfortable and vulnerable.

It must also be remembered that for some people, their earlier sexual experiences could have involved pain, aggression, a need to fulfil a ‘duty’, a lack of trust or other disturbing circumstances, including abuse. For them, the intimate nature of personal care can be a throwback to a time that they would never want to revisit, and lead to extreme reactions such as emotional breakdown, aggression or refusal.

Dementia can also produce very uncharacteristic sexual responses, particularly an extreme lack of inhibition, whereby a person who was previously very conservative becomes very sexual provocative, may expose themselves without warning, or indeed make sexual advances towards anyone and everyone. It can be extremely embarrassing or upsetting for a spouse to witness this, and it can present problems for professionals too. As a paid carer, how do you cope with requests for sexual contact? Or finding someone you are caring for masturbating?

These are issues that even in our modern age of sexual enlightenment we don’t feel comfortable discussing, yet they are real and I guarantee that they are happening in homes, hospitals and care homes right now. Often issues of sexual desire produce laughter and jokes, but laughing at someone with dementia, labelling them (for example as a ‘dirty old man’) or taking the micky is never the right way to handle such a delicate situation.

I would suggest that gently placing unexpected sexual advances within the moral compass that is usually engendered in all of us from an early age (for example carefully explaining that you aren’t available due to being married to someone else etc) is sometimes all that is needed. Telling someone with dementia that they are already married and so must not feel this way often won’t work, as they may not remember that they are married and therefore won’t understand that context.

If someone with dementia is persistently touching themselves, especially in public, that can produce feelings of shame or embarrassment for their family or professionals caring for them. I remember frequently hearing a lady in dad’s care home chastising her husband when she found him masturbating, but shouting isn’t likely to help. Distraction techniques, or occupations that provide a sense of purpose, can help to avoid that confrontation.

Families, and especially a spouse or partner, often find the multitude of issues that can surface in relation to sexual desire and intimacy a hugely challenging aspect of dementia care.  From having a loved one with increased desire, to coping with a partner who doesn’t even want to kiss or hug you (as I wrote about here), issues of physical attraction and sexual expression are some of the hardest things to cope with, made worse by feeling that you cannot talk about them. Yet when you consider just how much sex is talked about in society, maybe it’s time we acknowledged and started to understand that desire isn’t just an exclusive club for the young. It’s for the young at heart too, and yes, even people living with dementia.

Until next time...

You can follow me on Twitter: @bethyb1886

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In sickness and in health

Through my work I am very privileged to meet and chat with people whose day-to-day life revolves around caring for someone with dementia or living with it themselves. Why ‘privileged’ you might wonder? Simply because having walked this path with my father, I know how tough it can be, and I have the ultimate respect and appreciation for what living with dementia really means both for the person themselves but also for those who are closest to them.

A lady currently caring for her husband said to me last week that she feels like she is drowning, that bit by bit dementia is literally sucking the life out of her, her marriage, her greatest friendship, her home life and her future. She is realistic about what the years ahead hold; she notices every change, every deterioration in her husband and plans everything, such as she can, on ‘worst case scenario’. She says she sees nothing ahead of her except darkness and sadness.

Another lady contacted me to describe the great emptiness in her life. Due to her own health she could no longer continue to care for her husband of 50 years at home, and reluctantly had to take the decision to move him into a care home last year. Having been married at 22, and never spending more than a few nights apart in all those years, she felt as though the blow dementia had dealt her life was, in many ways, worse than the bereavement that comes when a loved one passes away. She described it as if the disease was taunting her, explaining that although she still visited her husband every day, he appeared utterly oblivious to her presence.

Dementia doesn’t just affect older people either. I still remember very vividly hearing the heart-breaking tale of a lady whose husband had been a high-flyer in London. He had been offered and taken early retirement at 51, and he and his wife had planned to enjoy what they hoped would be golden years of rest, relaxation, travel and doing all the things that they had never been able to do whilst he was working and she was bringing up their family. Within a year of his retirement, her husband had been diagnosed with early onset dementia and his symptoms were advancing at an alarming rate. She felt bereft and cried daily, expecting that her husband would possibly never see his 60^th birthday.

These are just three couples in amongst hundreds of thousands, in the UK alone, whose lives have been invaded by dementia. I write a lot about how having a parent with dementia affects your relationship with your mum or dad, but if anything the effect on a marriage or partnership can be even more profound partially due, I think, to the age demographics involved.

When you are part of the younger generation, you grow up to appreciate the fragility of life as beloved older relatives experience health problems and pass away. I vividly remember losing my much cherished grandmother when I was only 7. My grandfather had died when I was just a baby, and both my father’s parents passed away long before he even married my mother. If anything life as a youngster tries to prepare you for looking after your parents and coping with whatever their needs may be in the future, not that such preparation is ever enough.

In a marriage or long term relationship, where both partners are often of a similar age, having made a life-long commitment to each other and with expectations of growing old together as their children go off and live their own lives, the blow can be even more cruel. That life you thought you would always have together will never be as you expected it to be once dementia intervenes. One partner will often be faced with providing care and coping with changes in their spouse that leave them feeling completely empty , isolated and vulnerable. Moreover, as dementia is terminal, you face one day laying to rest someone who may be the only person in your world that you could truly rely on.

There are also additional considerations when a partner has dementia. I have heard people with dementia describe their sadness at being unable to share a bed with their husband or wife due to dementia giving them violent night terrors that puts their spouse at risk of being unintentionally hurt. Many couples also bravely talk very candidly about dementia wrecking the intimacy in their relationship. How their partner’s dementia means that they have lost the understanding of what intimacy is, and that they no longer reciprocate even a hug or a kiss.

Maybe as a society, with preconceptions that dementia is a disease of the old and that sex is the preserve of the young, some may feel that this is all a perfectly normal part of aging. But try telling that to the husband or wife who misses the warmth of their partner’s body next to them on a cold winter’s night, or the expression of love, reassurance, solidarity, tenderness and kindness that a kiss or a hug provides. Without those fundamental aspects of a loving relationship, loneliness, depression and the searing pain and sadness of what feels like a separation can be overwhelming.

To anyone who is on the dementia journey with their best friend, lover and life-partner, I send you my thoughts and hopes that you find strength amidst the struggle, and love within the despair. For you, ‘In sickness and in health’ has a meaning well beyond anything you ever thought it would.

Until next time...

You can follow me on Twitter: @bethyb1886

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