IS IT CRUEL TO CONSIDER A DEMENTIA DIVORCE?

You vowed to stay together in sickness and in health. But when your spouse is lost in a twilight world, more and more of us face a heartbreaking dilemma, says this top lawyer

ACHILLY weekday morning. Yet despite the plummeting temperature, Elaine is taking an age to get dressed. Once a superorganised mother of three, a woman who’d throw on her clothes in a flash before diving into her burgeoning schedule, Elaine is fumbling with the buttons of her shirt.

After several minutes, her husband, Stephen, steps in to assist, completing the job in seconds. His frustration is palpable yet for him, and countless others, this is just one of many micromoments which reflect the challenging reality of living with a spouse who has been diagnosed with dementia.

Recent figures show that the number of people in Ireland suffering from the disease will more than double by 2036: currently, the degenerative brain disorder affects about 55,000 people. As the population ages, the figure will rise to a catastrophic 113,000.

But aside from negotiating the practicalities of living with a partner whose once crystal- clear mind has brutally unravelled, there’s an often unspoken heartache to this terrible disease. It’s one which, as a divorce lawyer with Gorvins Solicitors, I’m seeing with increasing regularity. And that is the number of spousal carers desperate to escape their marriage and file for divorce.

They come to see me in a state of absolute despair. Torn between the guilt of wanting to walk away from a lengthy marriage and the desperation of being ‘yoked’ (as one client put it) to someone who is at best helplessly vacant and at worst angry, violent or over-sexed.

Even after working as a family lawyer for more than 30 years, I find it utterly heartbreaking.

In cases of spousal Alzheimer’s, plans for the future are supplanted by wistful memories of past intimacy, friendship and companionship. The physical presence is there but the loneliness is crushing.

With the number of over-60s divorces increasing by over a third in the past ten years, it’s quite likely that spousal ill health is partly responsible.

As Stephen said when speaking to the Irish Daily Mail: ‘There isn’t a day goes by when I don’t think about being free from my marriage and having a “normal relationship”. About having a normal life — busy, romantic and intimate. Not just the sex life. That’s such a small part of it all. But just having that full, rounded existence of being with someone you can talk to, make plans with, just, well, be with.

‘But how can I go? My wife is so vulnerable. It’s too cruel to leave her. What’s more, if I did that, it would be left to our children to have to look after her, maybe to move back home (one is at university and two are working away from home). How could I do that to them when their lives are just beginning?’

‘So I have no choice but to face up to the fact that there is no escape from this. I’ve been with my wife for over 30 years. She needs me — and even though the life we once had together has gone — I have to stay.

‘But there are so many times when I have just wanted to bolt out of that door and not come back. It’s a lonely, miserable existence.’

What compounds the tragedy of Stephen’s story is that his wife is suffering with early-onset Alzheimer’s (when the disease occurs in someone under 65). Elaine was formally diagnosed two years ago aged 56.

Though, as Stephen points out, in retrospect the signs were there long before, triggering a pattern of behaviour which pushed their relationship to the limit.

‘Our daily life was imploding because of the way she was behaving,’ he says. ‘Not only was Elaine short tempered and irritable all the time, she was making such a big deal out of the smallest things, such as making dinner or planning to go out.

‘She also became a habitual spender — I’d look at the credit card statement and be able to track her purchases all over town, one quickly made after another. She bought clothes she never wore, or plants which she never potted in the garden. There’d be photo frames, nick-nacks. ‘I asked her what she wanted all this stuff for and she would just argue that she did. The rows were terrible. The bubbly, gogetting woman I’d married all those years ago had turned into a terrible, irrational shrew. And in the end, after a few months I left.’ Although the couple separated, they never divorced. And ironically, it was when Elaine was diagnosed with Alzheimer’s two years later, that Stephen returned home.

‘What choice did I have?’ he asks with teary resignation. ‘I couldn’t load that on my children. But inside I yearn for that freedom.’

Such a brutally candid description of life on the dementia frontline couldn’t be more different from the public vows of love and devotion made by sufferer Dame Barbara Windsor and her husband Scott Mitchell.

The 81-year-old former EastEnders and Carry On star has been living with Alzheimer’s for four years.

In a pre-recorded video, she called on people to run the London Marathon in aid of a campaign to raise money and change attitudes towards the condition. Filmed in her home, those blue eyes fringed by long lashes still twinkly, it was hard to square the familiar face of a national treasure with the ravages of Alzheimer’s. If anything she presented a calm and almost comforting side to the illness.

Meanwhile, her devoted husband, offered soothing words. ‘Despite all the changes in Barbara, there is still so much of her there. Her humour, wit and care for others, for example. It is her humour I love the most — we have always laughed a lot,’ he said.

SUCH a situation is gladdening and offers hope to those entering the dark and deeply frightening world of spousal dementia. But the reality is so different for many clients who come to my door.

Like the lady who sat in my office recently and said she was now scared of her once loving and softly spoken husband.

Knuckles white from twisting a tissue in her hands, she told me how he was the kind of man who once embodied the cliché about never hurting a fly.

If anything, she said, he had always been her protector — something very much reflected in their respective roles.

She was the homemaker who’d given up work to look after the family while he was the business executive who provided for their needs and cushioned his wife and children from the financial realities of the outside world.

‘I just can’t take his mood swings and his aggression,’ she told me. ‘He hasn’t hit me — if he did I’d go. But he gets so frustrated when he can’t remember things. He smashes plates and

throws cutlery on the floor. I just can’t live with it. I’m at breaking point.’

Yet despite reaching such a desperate stage, she admitted how terrible she felt even sitting in my office. The very idea of seeing a divorce lawyer seemed to her the very ultimate betrayal of a man she had known all her adult life (she had met him as a teenager and was now in her late 60s).

Of course, divorce is a huge step — sweeping with it feelings of enormous guilt and loss. Then there are the children. I have seen clients whose children, already suffering their own emotional turmoil, have been horrified that the parent carer would even consider abandoning their mother or father.

Parental responsibilities and sensitivities add another tangent to an already impossibly tense situation. Little wonder that some of the people who see me never come back. They soldier on.

Perhaps they have spoken to friends or family. Or perhaps they couldn’t silence their conscience. What happened, they tell themselves, to that vow: ‘In sickness and in health?’

As a divorce lawyer, it is not for me to make a judgment call — I’m there to explain the options. But never to encourage a course of action.

One distraught client told me she literally had to get out. Her life, she said, was — and I’ve never forgotten this phrase — a living death. Her husband, who was in his late 60s and who had been diagnosed about a year before, had become very sexual.

He would walk around naked all the time and see sexual suggestion and invitation in routine actions, such as getting into the shower, or simply wearing a bath robe. The situation was clearly intolerable — she could, in theory have been in danger of rape — although there was no suggestion he had forced himself upon her and he had accepted her rebuttals.

But she couldn’t take the chance and, at her behest, we had to apply for an injunction based on his unreasonable behaviour. As for the finances, all she wanted was a fair split — enough so her husband could be looked after and enough so that she could have somewhere to live.

Rosemary Westwell, a former music teacher, said she ‘lost’ her husband John when he was diagnosed with behavioural variant frontotemporal dementia — which affects the parts of the brain responsible for social behaviour — at the age of 46.

‘There were so many times when I wanted to leave,’ she says. ‘He was always angry, or doing difficult things. Like the time he made a fire in the middle of the sitting room. I remember thinking, “I’m living with a mad man. I have to get out of here.”

‘There were many occasions when I was at breaking point and wanted to see a divorce lawyer. I no longer had a husband, so why should I stay with him — he needed care, of course. But he didn’t need a wife.’

Rosemary, who has written about her experiences in John, Dementia And Me, is still with her husband.

NOW 72, he can no longer walk or talk, and has spent more than a quarter of his life living away from his family in care facilities.

She says: ‘I’m not his wife any more — yet there is still something that holds me to him, when I’m with him. It’s not selfish for spouses to leave — to make sure they and their children are healthy, well and have the chance of a life. But equally, John can’t help it. I’m from a generation where we didn’t see divorce as a simple option.

‘So I’ve adapted. I keep busy, meeting friends, I run a choir and a support group, I have platonic male friends. Perhaps it might have been different if I’d have met someone I wanted to be with. But I never have. Though maybe subliminally I feel that would have been a betrayal. So my relationship — marriage — with John endures. Though I would never criticise anyone who did leave.’

Meanwhile, Stephen knows he has sacrificed his chance of personal happiness. After years in a senior local government position — it was where he met Elaine — he has taken early retirement to be his wife’s full-time carer.

In recent months Elaine’s condition has worsened. She is now so confused that the other week she didn’t recognise one of her own children on a family photo.

She has stopped reading and can’t remember things her husband tells her, such as where they are heading when they go out. Occasionally, says Stephen, they hold hands, but that’s as far as it goes. The romance and intimacy is buried, steamrollered by the marks of the disease.

‘Abandoning Elaine is not an option — even if I could arrange for her to have full-time care,’ he says. ‘I have to stay with this now. But in committing myself to her life, it is consuming part of mine with her.’

O alzheimer.ie