Married? Separated? The loving partners of dementia patients are living in limbo

Married? Separated? It’s a hellish sort of limbo for the loving partners of dementia patients. What can we do to ease the strain?

Janet Green with her husband of 47 years, Bruce. Picture: Colin Murty

For Janet Green, Friday nights now bring with them an acute sense of loneliness. For a decade, she and her husband of 47 years, Bruce, had a longstanding date with the piano licks and sultry jazz vocals of Nina Simone. “We used to dance in the loungeroom every Friday night,” she says. “I’d get home first and light the candles and he would walk straight into my arms.”

Bruce, 76, was a skilled engineer, a sailor, a rugby lover, a swimmer and bodysurfer. He was also a beautiful dancer. “We were a perfect fit,” says Janet, 70. “I always thought dancing would see us through to the end – it was our most ­intimate means of communication. But then he started treading all over my feet. He lost the ­desire for movement. I was devastated. I thought this language of ours would last forever.”

Janet Green is not a widow. She’s not separated or divorced. She is one of the legion of spouses whose love stories have been shattered by dementia. She lives alone, in mourning for someone who is still alive. It brings a particular, complicated pain. “I didn’t realise it was going to happen so fast,” she says. “Within two and a half years, he was in such rapid decline there was no option but to move him into care. That’s a horrible end to a marriage. I always thought we’d do old age together. It’s only now that I’m realising the love of my life has gone. I didn’t get the opportunity to say goodbye. I didn’t get to say thank you.”

Month by month, Janet and their two grown-up children have watched helplessly as small pieces of Bruce have drifted away. Dementia has withered his personality and imprisoned his mind. His disease has also landed her in a statistical no man’s land. On legally binding documents she has no option but to list her marital status as “separated” – an anomaly even the Census can’t clarify. “I am effectively widowed, but my husband is still alive,” says Janet. “I’m married, but we are eternally separated by illness. There’s no box to tick for my situation. I live in a horrible void, not just emotionally but financially and legally. To say I’m separated erases Bruce’s identity as my husband. Yet ­because I’m tied to his incapacity by marriage, I have far less rights than if I said I was widowed.”

Janet Green: “I’m married, but (Bruce and I) are eternally separated by illness.” Picture: Colin Murty

According to the Australian Institute of Health and Welfare’s summary report of 2022, there are 433,300 Australians living with dementia. Half remain married. Of those, 133,766 dementia patients are living in nursing homes, away from their spouses. Those wrenched from lifelong partners with cognitive decline become the invisible victims of this truly awful demise. Every couple is denied the freedom to write their own ending. Dementia drives them apart, even as it binds them together, allowing no ­escape for ­either. Its final insult is the financial toll. A diagnosis brings with it an avalanche of bills for medical treatment, home support and eventual nursing home care. At present, the per capita cost of residential aged care for an ­Australian male aged 75-79 with severe ­dementia can reach $138,000.

Janet, who lives in the Perth coastal suburb of Swanbourne, has crossed into the parallel universe inhabited by those who must watch their loved ones in terminal decline: “He’s not coming home and I’m forced to live alone, even though I feel very much married. I’m so lonely and isolated, yet I’m still tethered to him in so many ways – financially, legally; ways I wouldn’t be if I was divorced or widowed.”

Always a placid, sweet-natures man, “fit as a flea” and a dab hand at carpentry, Bruce was 70 when his wife began to notice flickers of confusion. “He was struggling with his computer, with the banking, and then I noticed none of his nails were hammered in straight. He’d always slept like a log, but then he started wandering about in the middle of the night. He began ­getting lost, catching the wrong bus, failing to turn up to drinks with the boys. He hid it well, but not from me.”

For Janet, the rupture to their love story ­triggered waves of grief. Bruce’s personality shrank to one of childlike meekness. “He was defenceless,” Janet says. “There was no denial, no fight, no tears, no tantrums. He agreed with me he was having some problems, but that if a diagnosis of Alzheimer’s came, he didn’t want drug treatment. We never really got the chance to talk about what else he wanted because very soon he lost his ability to communicate.”

Together at their daughter’s wedding before Bruce’s dementia diagnosis. Picture: Courtesy of Janet Green

With his grandson before his dementia diagnosis. Photo: Courtesy of Janet Green

With disbelief, Janet witnessed his slide into infirmity. He swiftly lost his bearings and his fragile hold upon his self. And then a sudden, unexplained episode of delirium in 2022 chased him down an even steeper decline. “He fell off a cliff,” she says. “I couldn’t keep up – with the paperwork, the legal preparation, the daily care, the worry, his wandering, the sleepless nights.” When Bruce’s GP suggested his ongoing care was too big a strain for her, Janet reluctantly moved him into a nursing home. “Life gives us sudden loss, we all know that, but no one expects this incessant decline. Having to watch this happen to your life partner is torture. Sometimes I think, ‘This is probably going to kill me,’ because I cannot remove myself from the horror of watching this beautiful man being eaten alive. I call it live widowhood – I’m married and widowed at the same time, suspended in this limbo of grief.”

It’s a bright Thursday morning under adome of cloudless sky. I’m meeting Bruce for the first time at his final address: the locked ward of a nursing home near Fremantle. The street is lined with plane trees ablaze with colour, their last stand before ceding to winter. Bruce doesn’t know it’s autumn, doesn’t know his wife is coming to visit, doesn’t know his daughter will soon make him a grandfather for the second time. The vast freedoms of an independent life have gone for good.

Janet taps the code into the keypad that will allow her access to her husband. He is asleep in a chair in the dining room, his hands gently folded in his lap. Smooth-skinned, hair neatly combed, he wears a soft pale blue sweater. I map his robust physique against the panorama of enfeebled bodies around him and marvel at how out of place he looks here.

“Hello beautiful,” Janet says as she cradles her husband’s head in her hands. He stirs ­briefly and nuzzles his face into her. They are a picture of devotion. Around them, other residents are noisy with their sufferings. Staff ­bustle around delivering lukewarm cups of tea. A small birdlike woman, painfully hunched, crowds Bruce’s chair, demanding to know who Janet is. “I’m his wife,” says Janet, and the small creature shakes her head vigorously and shuffles in uncomfortably close.

“That’s Audrey,” Janet tells me. “She thinks Bruce is her husband. Sometimes she attacks me. She’ll hit me and swear at me and it’ll take three staff to pull her away. It can be bedlam in here. No one tells you what a secure dementia ward will be like. There’s no privacy for the two of us. Other residents wander in and out of his room, pocketing his things. I know he’s here for his own safety. I see that he’s well-cared for and the staff love him, but I find visiting him so traumatic.”

For most of his 76 years, Bruce’s body has been a remarkably resilient machine. He’s had no broken bones, no stents, no surgical implants. There have been malfunctions, of course – a ruptured disc, a frozen shoulder – but nothing life-threatening. Instead, he has been incarcerated by his own incapacity to think.

Dementia has erased all traces of his grit and stubbornness. In his now forlorn state, the once familiar sensations of a sailor’s wind-slapped cheek or a swimmer’s salt-roped hair have been lost to him. “This is how my husband is finishing his big, beautiful life – in a barely furnished room with a single photo-board screwed to the wall and a wardrobe full of lovely clothes continually shrunk by the commercial washers.

“He’s living in a halfway house between life and death. It’s noisy, it smells of decay and I go home in tears and wash it all off me in the shower. I feel cheated. Other illnesses allow you to communicate on the way out, to retain some dignity, to have those meaningful conversations we all need to have at the end with the people we love. But Alzheimer’s robs all your goodbyes. This disease is a terrible cruelty.”

In the 2021 Census, more than a quarter of a million Australians aged over 55 listed themselves as “separated”. How many of those ­marriages have been torn apart by a spouse being interned with dementia? An economic report commissioned by Alzheimer’s Australia in 2017 through the University of Canberra ­declared that – in the absence of a significant medical breakthrough – more than 6.4 million Australians will be diagnosed with dementia in the next 40 years at a cost of a trillion dollars. Many spouses who are carers find themselves in legal black holes, unable to act in their own best interests because of their responsibilities towards their partner. Lawyers have told Janet she can’t amend her will (which was signed at the same time as his) or transfer the title of their marital home into her own name until Bruce has passed away. “It’s very frustrating that I’ve lost my power as an individual because I’m married to someone with dementia. Why should I be legally incapacitated by my husband’s mental incapacity? It’s not fair.”

‘I love and dread visiting him.’ Picture: Colin Murty

She is now learning to adapt to her new life as a living widow. “I’m so grateful for the 47 years we had together, for the happy memories, for the family we created, for the wonderful times ahead with my little grandsons. I know I’m lucky in so many ways. But it’s the loneliness that gets to me. When I moved Bruce into care there were no flowers, no food delivered to the door, none of the rituals of acknowledging someone’s loss. All my adult life I’ve cooked for friends in distress, but nothing turned up for my time. I was shocked and I was desperately saddened. I think people are so frightened of dementia that they try to avoid stepping into this world until they have to.”

The locked ward is a portal to another reality, of lives at their lowest ebb. Janet wonders what her breaking point will look like. As Bruce’s wife, her dilemma is how to accept that her much-loved husband has become someone else. As Bruce’s carer, Janet’s role is to soothe the worries, remove the obstacles and knit ­together the loose threads, the pulls and runs of an unravelling life. And as Bruce’s proxy, it’s Janet’s responsibility to maintain his integrity – to safeguard him from becoming so diminished, so weakened, that who he is becomes disconnected from who he was.

No matter how impossible it became to look after Bruce at home, Janet still carries the guilt that accompanied her decision to move him into care. And researchers now believe there may be an element of contagion in the chronic stress experienced by spouses. A 12-year study led by Utah State University found that those looking after spouses with dementia were six times more likely to develop cognitive decline themselves. Dementia caregivers reported more acute distress and personal sacrifices than those study participants who were caring for spouses with physical – not mental – impairments. For that reason, doctors are being urged to recognise the severity of the experience for both partners.

“I love and dread visiting him,” says Janet. “I go as often as I need to. Some days I drag myself in there, and stay as long as I can hold myself together. He won’t make eye contact. It’s part of the condition but it tears my heart apart. For nearly 50 years we navigated daily life with such ease, the two of us. But he’s gone to a place where I can’t follow him. I’ve lost my ‘us.”’

‘I didn’t realise it was going to happen so fast.’ Picture: Courtesy of Janet Green

Asleep in his chair, Bruce slumbers on, a beam of sunlight warming his feet. He now ­absorbs the seasons by osmosis, through whatever slice of sky is available through the nearest window. There will be no more dancing. No more Rugby World Cups. No more sailing regattas. He has missed his wife’s 70th, his toddler grandson’s first words. “I watched my daughter’s face as she told her Dad she was pregnant again,” Janet says. “He didn’t react. She was quite tearful about that. I saw her pain.”

It’s time to go. Time for fresh air, for ­breathing space, for the solo drive home. Janet kisses Bruce’s cheek, presses her ­forehead to his and whispers: “I love you. I miss you. See you soon.”

He does not respond.