Courtesy of My Generation.

When your partner becomes disabled – and it can happen at any age – how do you suddenly deal with the day-to-day care and expenses? DONNA FLEMING finds out. 

When Gail stood at the altar 45 years ago and promised to take her groom Peter “in sickness and in health” it didn’t occur to her what “in sickness” could involve.

“When you’re in your twenties you think you are bulletproof,” says Gail, now 68. “You don’t imagine that you will end up having to take your other half to the toilet.”

There are thousands of New Zealanders like Gail become carers for their spouses and partners after they become sick or disabled. Around 420,000 Kiwis look after another person, according to the 2006 census (although it’s thought the number may actually be as high as 750,000). Of those, 34% are partners or spouses.

Unlike those who find themselves caring for a child or parent, partners or spouses are not entitled to the Domestic Purposes Benefit payment called Care of Sick or Infirm. So financial problems can add to other stresses and end up taking a toll on carers. A recent study of New Zealand carers showed 63% of them suffer depression, compared with around 20% of the general population.

Gail knows what that’s like – caring for Peter, who had Parkinson’s disease but eventually died of cancer, affected her both mentally and physically. She was on anti-depressants for several years, and also suffered a bad back after she tried to pick Peter up after he fell.

“But you don’t feel that you can complain – your problems are nothing compared to what your husband is going through.”

Peter was diagnosed with Parkinson’s disease in his fifties and dependant on his wife by his sixties.  “It was difficult for both of us,” says Gail, who has two adult children. “He hated being sick and having to rely on me, and there were definitely times when I resented having to give up a large chunk of my life to do things for him.”

Peter’s worsening health meant he had to leave his managerial job before he was ready to retire and they had to scrap the plans they’d had to travel extensively. Gail initially continued working in administration after Peter’s health went downhill but after several years she quit to look after him. “That was difficult because after years of doing jobs that bored me silly, I’d finally found something I loved.”

Financially they were fortunate – their mortgage was paid off and they could live on the nest egg they’d saved for their travels. But Gail says she still worried constantly about money.

She got very little family support when it came to looking after Peter. “My children found it hard to deal with their dad’s illness, plus they had their own lives to get on with. I never really asked them for help. In fact I hardly asked anyone for any help at all, until he got really bad.”

Like Gail, many people are slow to seek support. Sometimes it’s because they have a ‘make-do’ mentality, but often it’s because they just don’t know where to go, says Laurie Hilsgen of Carers NZ.

Laurie co-founded the organisation in 1993 when she found herself caring for her partner after he had a series of strokes. “It’s a lot to deal with – there’s the practical side as well as the emotional side. Most of us have no experience supporting someone with mobility needs or continence needs and it can feel like everything has been thrown at you at once, especially if it’s something that has hit suddenly, like a stroke.”

Last year Carers NZ helped the Ministry of Social Development to put together a booklet called A Guide for Carers which provides information on government help, such as types of financial assistance, how to get respite care and your rights at work. 

Meanwhile Carers NZ can assist with details on everything from where to get continence products to how to hook up with other people who are in the same situation.

“It is very difficult to know where to go but there is more support available these days,” says Laurie. “What’s really important is that carers are proactive and ask for help.”

They also need to look after their own health. “Caring for someone can be very stressful and hard work. People are not machines. Even with the best will in the world you will get burnt out if you don’t ask for help,” says Laurie, who had a breakdown herself after caring for her partner for five years. “I wouldn’t let anyone else help and I never had a respite break. It was a bad mistake.”

Mental health issues are a particular concern for carers, and as well as depression, they can suffer from anxiety disorders and phobias. Often they don’t want to say anything about what they’re going through because they’re meant to be the strong one.

But they should speak up because not getting help could result in them being incapable of caring for their other half.

“If anything happens to you then you can’t care for anyone else, so your own health does need to be a priority.

“We often see cases of older people supporting spouses who think ‘when my partner dies I can have a break. Things will get easier’. But being a caregiver is an independent mortality risk. Carers often die first.”

Another problem carers tend to keep quiet about – understandably – is feeling so stressed that they end up taking out their frustration on their partner.

“Abuse is a subject we don’t talk about, and we should,” says Laurie. “There can be a lot of grief and emotion that builds up and you can end up lashing out at the person you support.”

There are steps you can take if you’ve reached this point, such as making sure you’re getting adequate respite care, and learning coping mechanisms. “Simple things can help, like making sure you leave the room and count to 10.”

The abuse issue can work both ways – for example people looking after dementia patients who become aggressive because of the disease may be on the receiving end of physical violence.

Aucklander Mary, whose husband Bill has Alzheimers, says she’s been hit and shoved. “But it’s not him, it’s the Alzheimer’s. He was never ever violent towards me before he got sick – he’d be horrified if he could understand what he’s done.”

She says she’s learned to recognise when he’s getting upset, and “not get too close.”

Of all the issues carers have to face, one of the most worrying ones is money. Among people under retirement age, it’s not unusual to hear of cases where one partner has to give up work because they’re sick, and the other can’t stay in their job because they have to provide full-time care. So they go from two incomes to none. And not only can there be less money coming in, but there may be more going out. 

“There are a lot of extra costs. People are having to bear more of the costs that used to be borne by the government, such as continence supplies,” says Laurie. “And things like doctors’ visits, drugs, special equipment and transport can all add up.”

Despite all the difficulties associated with caring for a spouse, it can be a very positive experience. It can be satisfying and rewarding, says Laurie, and may strengthen your relationship.

But she adds that people should accept that not everyone is cut out to be a carer. “Not everyone has the right personality.”

Many years ago Laurie was horrified to hear that a man whose wife had recently become disabled was refusing to care for her. “There was a lot of disapproval from medical staff, and I thought it was terrible at the time. But in hindsight, I admire him. He made the call for her to go into care and he could continue to have a quality relationship with her while she received good care. I think that was brave.”

People also have to accept that they may not always be able to look after their partner. “There does come a time when, for whatever reason, you can’t continue. Being able to recognise this is an important part of caring. 

“You have to accept you can’t do it anymore and that it is OK to let go.”

• To obtain a copy of A Guide for Carers see www.carers.net.nz or www.msd.govt.nz . It’s also available from WINZ – phone 0800 559 009.
• If you have significant caring responsibilities, you are entitled to ask for changes to your work arrangements, such as going part time.
• Family carers are New Zealand’s biggest health workforce and they’re estimated to save the country more than $3b a year.
• A study of 300 Kiwi carers carried out last year found that two-thirds of people interviewed had financial problems.

About Carers NZ

Carers NZ is a charity that:

• Provides free information, advice and support
• Can refer to you carer support groups in your area
• Can help you find out what allowances or subsidies you may be entitled to
• Supports the NZ Carers Alliance, which lobbies the Government on issues affecting carers
• Works with other charities, community groups and government agencies
• Puts out a free quarterly magazine, Family Care NZ, and has an online radio showOrganises events, including a conference for carers every two years

See www.carers.net.nz  or call free on 0800 777 797

Rob and Judith’s story

Try to tell Rob Linton his wife Judith is lucky to have him and he’ll butt in before you’ve finished the sentence.

“Oh no, I’m the lucky one. I’m lucky to have such a wonderful wife.”

Rob may protest but Judith, who has multiple sclerosis and is wheelchair-bound, agrees she’s fortunate to have a husband who is totally devoted to her care. “The things he does for me are amazing. He’s a fabulous carer,” she says.

Those things include showering and dressing her and helping her to the toilet. Rob tries not to be away from Judith for more than an hour in case she needs to use the loo. Plus he does the cooking and the cleaning in their Auckland home and much of the shopping.  He doesn’t get any outside help although you wouldn’t blame him if he asked for it – he’s 85.

“I’m old but I’m pretty fit for my age,” says Rob, a retired psychologist who worked in education. “I’m grateful I’ve got my health and fitness and can still look after my wife.”

He does concede that it’s getting harder. “Lifting Judith can be difficult. I’m starting to feel it now – I’m not as strong as I used to be.”

But he doesn’t want help with the housework – 12 years in the Navy made him fussy about how things are done. “And I like doing things for Judith. As she’s needed more help over the years I’ve done more. I want to do it, to help her to keep her independence.”

This is a second marriage for both Rob and Judith. Retired teacher Judith taught Rob’s daughter Diana when she was a child and the couple later crossed paths on a course. Then, in the early 90s, Diana was going to visit the favourite teacher she’d kept in touch with for many years and asked her dad to accompany her. Romance blossomed for Rob and Judith, who were both widowed by then.

Judith had already been diagnosed with MS but Rob wasn’t daunted by the thought of marrying someone he was likely to end up caring for.

“So she had MS and a walking stick – big deal,” he says. “I didn’t marry an illness, I married Judith.”

Judith’s health will inevitably continue to deteriorate but Rob says they will find a way to cope. The only time his voice falters is when he admits that he does worry about what will happen to Judith if he has health problems himself. “If I get sick, what on earth will we do?”

But he refuses to dwell on those concerns. There is a contingency plan – Diana, herself a professional carer, has promised to help – and Rob says, “I’ll worry about it when it happens.”

Like Rob, Judith has a very positive attitude. “Some people think ‘poor me’ but we are not going to let this get the better of us.”

The couple keep as active as they can – they’ve just been on a Pacific cruise – and do voluntary work. They both support the MS Society,  while Rob is involved with Lions and Judith is a ‘caring caller’ for St John, ringing housebound people to check they’re OK.

Judith’s illness hasn’t put a strain on their relationship, says Rob. “If anything it has brought us closer. It has made us grateful that we have one another.”