In sickness and in health, but what if your beloved has dementia and doesn’t know you anymore? As the number of people with the condition grows, Teresa Cowie finds spouses wrestling with their desire to start new relationships.

There came a point when John* became so aggressive that the neighbours started to worry. He didn’t hit Heather* but there was always the threat of it hanging over her.

“Two of the neighbours came up to me and said, ‘Heather, we really are concerned for your safety’. They’d heard him being so abusive and knew he’d been a butcher by trade and had knives on the premises.”

She put on a brave face for the family and covered for John, smoothing over the cracks of his personality changes to protect the children from the sadness of their father fading away.

John wasn’t always like this. The aggressive, threatening man wasn’t the real him.

He was diagnosed with dementia - an umbrella term describing symptoms that lead to damage and a gradual loss of brain function; including changes in memory, thinking, behaviour, personality and emotions - in 2013. The signs, says Heather, started to appear after he had a fall in their garage; further investigation by doctors found there was something else going on.

Looking back, she says, she and his grown-up children noticed his behaviour beginning to change about 10 years earlier. For most of his illness, she cared for him at home - only putting him into care for a brief spell - and as he became more forgetful, she had to think for two people. It was exhausting. And then a chink in the darkness; she met another man and fell in love.

***

An increasing number of New Zealanders are caring for partners with dementia. Almost 70,000 New Zealanders have the disease, and by 2050 more than 170,000 people will have been diagnosed - this latest forecast is much higher than previously projected. With so many sufferers, Heather is not the only one who has had to ask themselves if it is okay to love again when the spouse they knew is still there in body, but gone in mind.

Falling in love again

Soaking up the late summer sun on the deck of her new partner Charlie’s* neat suburban home, Heather* is bright and bubbly, dressed in a flowing top, patterned with flowers that look like they have been painted in water colours. It’s been nearly a year since John passed away. They were married for 38 years.

The electric door to the double garage rolls up to reveal the bikes Heather and Charlie trained on to cycle the 150km Otago Rail trail together. They fell in love while riding them. Heather, 62, had sought help from a carers’ support group. Charlie, 72, had too - his wife, Karen, also had dementia. They both took part in a cycling group put together as an opportunity for people to take some time out from caring and get to know others in the same situation

About seven months before John’s death, Heather and Charlie headed to Otago with the rest of the group. Hours spent cycling through the parched Grahame Sydney landscapes, and exploring the goldfield relics along the way, gave them a chance to get to know each other and ponder their futures. During the trip they realised they had a lot in common.

“We just got on so well, and we've got this little chemistry, so we thought, life’s too short, let’s give it a go,” Heather says.

Charlie has kind eyes and wrinkles that speak of a life spent smiling, and he’s thoughtful as he talks about Karen, who died last year. They had already talked about what they would do if the worst happened and she had given her blessing for him to move on, he says. He never imagined it would actually happen as he had always thought he’d be the one to die first.

Heather and Charlie didn’t try to hide their relationship. It would have been hard to anyway; people knew something was up when Heather’s tired, lonely demeanour lifted, she says.

“Most friends and family were absolutely thrilled for both of us because they could see, in my case, I was happy, like a weight off my shoulders.”

But not everyone was supportive, and at times she struggled with the stigma of starting a new relationship while married. “Some people won't see it as ever being right, that you should have someone in care and be with somebody else. I mean, the reality is that that relationship of a husband and wife wasn't there for some time, not just days or weeks, it's been a progressive thing.

“It used to really eat me up ... but not now, I’m used to it.”

A case of the guilts

Derek* can’t come to grips with the guilt. His wife, Cheryl*, was diagnosed with dementia seven years ago and moved into a rest home in 2017. Derek has met other women but he can’t shake the feeling that what he’s doing is wrong.

The grief of losing his wife bit-by-bit has brought a pall of sadness and disconnectedness over Derek’s family. “I’ve been quite depressed about it,” he says. “She's the living dead; she's still alive and she's got no quality of life.”

Derek visits Cheryl so often the staff there tease him that he may as well get his own room and stay. “I go there most days in the mornings to have a cup of tea with her and now that things are worsening [with her condition] I’ll go twice today to feed her; she can't do any of that.”

He is struggling. “I get quite lonely and you kind of start moping and wishing and thinking.”

Derek is part of the carers’ group Heather and Charlie attend, and he knows others in the group have started new relationships. Derek says initially he couldn’t get his head around their decisions; he thought it was morally wrong. But then he started wondering whether he should find someone else too.

“These fellows [in the group] have said to me, ‘Get on with your life, it’s not going to stand still for you. What are you gonna do, just sit and mope all the time?’”

He’s recently taken their advice, but with much trepidation. “There's been a couple of occasions I’ve met someone, everything's gone well and then I chicken out of it … I get a case of the guilts and I'll probably get it again.”

But he’s going to keep trying - he’s recently met a women, and so far it’s going well, but he’s keeping the relationship under wraps. “My kids don't know, because I don't know how they'd react. So that's possible that I'm doing the wrong thing there. But at the end of the day, It's me and my life, I'll do what I want to do. Whether it be right or wrong, who knows?”

Going public

For Marie* it’s not her own feelings of guilt but the judgement of others that’s preventing her from fully embracing a new relationship. She is in her mid-70s and on the cusp of deciding whether to go with her heart and ‘come out’ about her new love.

Where she lives, in a subdivision of perfect, modern houses, her place stands out as having an extra shine. The ‘For Sale’ sign at the front explains its pristine, open-home-ready look. She’s getting ready to move out and move on.

Most of her family already know she’s seeing a man called Bill*, but she hasn’t told any of her friends. Over a cup of tea she oscillates between feeling emboldened and worrying about the social consequence of going public.

Her husband, Alistair*, 83, is living in a secure care facility for people with dementia. When he was living at home with Marie, he tended to wander off; Marie had to give up work to look after him after he got lost several times. She had to follow him like a shadow and began feeling lonely and isolated.

“It virtually got to four years we were prisoners in our house, I had to lock the doors … so he was completely enclosed at this end of the house and the garden.”

After watching others succumb to the stress of nursing their ill partners, she decided she needed to make a change. “In a month I'd been to five of my friends’ funerals who were the caregivers of dementia patients who had died and by the time I went to the fifth funeral I realised it was going to kill me, [the stress], if I didn't make a life for myself.”

Marie had once asked Alistair what she should do if he ever became ill and he told her, “get on with your life”. But now she’s grappling with what people will think of her choice to date Bill.

“I'm probably of the old school way, you know - your marriage is marriage until death. And you have that stigma about you, you know … people think you're a naughty girl.”

She’s clearly smitten and loves that he is romantic and kind, and sometimes makes excuses to stay the night at her place. “We went out for dinner last night and came home [to my house] at 10 o'clock? And he said, ‘Oh, I think I'll stay here, my house’ll be cold, let’s put on the heatpump'.”

“We were talking about it other day, seeing as my property’s sold and I’m looking for a new house and that. We will get together, you know, probably sooner than later. But, you think oh, gosh, should we do it, what will everyone say?”

The Other Woman

But if there are difficulties for carers who fall in love, there’s just as many issues for the new partners. How do they find a way to fit in to an unlikely love triangle? American Tami Reeves wrote Bleeding Hearts: A True Story of Alzheimer's, Family, and the Other Woman about her experience of starting a relationship with a man whose wife was living with Alzheimer's.

Tami met Eric on a dating website in 2007. His wife Gaye was diagnosed with early onset Alzheimer's at the age of 48 and her decline was fast; within a year she was in a care home. A few years later, his worried children suggested their down dad give dating a try.

Eric was upfront from the start about his wife’s illness and Tami, a divorced paediatric nurse, fell for him quickly but held back. “I knew right away that I was drawn to him. And it took me a while to sort out why I was drawn to him, to make sure I wasn't doing it as a nurse (who wanted to care for him) but as a woman seeking a relationship.”

Tami says there was little resistance from Eric’s family, but some of her own friends were initially worried about her getting into such an unconventional relationship. “But I never gave it a second thought, once I got to know him and met his family. I even met her (Gaye’s) mother, about three weeks into our relationship and got her blessing too”.

Tami says she always felt mindful that she should be careful not to push herself on the family. “I wasn't there to replace her. I wasn't there to get rid of her.”

As they were so open about the relationship, she even felt comfortable visiting Eric’s wife at the care home.

Tami says Eric and Gaye never had the ‘what if’ conversation. “I think people need to have this conversation, especially nowadays, when it seems like dementia is really on the rise and getting younger and younger people.”

If you’re close enough to someone to be married to them then you should be able to broach a subject like this, she says. She even advises that people tell others close to them about the conversation and suggests even drafting a legal document.

She says Eric continued to be a good husband to Gaye until she died.

***

Back at Charlie’s house, there’s no question that he and Heather still hold their former spouses dear. The walls of the living room are covered in photographs of Charlie’s wife, Karen, printed on large canvases.

“Heather and I still talk quite regularly about our spouses and reminisce; little stories, things that happened, things they said, so it's not a taboo subject or anything like that,” he says.

In the garden they sit next to each other at a picnic table, hand-in-hand, and leaf through an album Heather made of photos, tickets and memories from their Otago Rail Trail cycling trip.

Having observed close-up how fragile health and life can be, the pair are determined to make an adventure of the rest of their lives. They’ve just thrown caution to the wind, had a friend in Australia look over a caravan for them and clicked ‘buy now’ on the internet. They’re planning on leaving the New Zealand winter behind for a trip around the warmer climes of Australia.

Charlie has no regrets. His advice to anyone in a similar situation? “Go with your heart, you just need some companionship, especially if you feel very lonely at times. I’d recommend it.”

*Some names have been changed to protect people's identity

This article was first published by Radio NZ. Listen to the full Insight Documentary here.