Norah Barlow ONZM
It's 3:00 am in the morning and the phone rings. It’s the hospital calling as Dad has had a fall at home and activated his alarm. We had been worried about this happening, due to his increasingly unsteady balance and not being able to fully care for himself. To add to his health issues, he wasn’t eating and was becoming even more lonely.
We had become too reliant on his paid carers who were engaged to assist with showering and some personal cares. They were good but couldn’t always be relied on to be there for him due to car breakdowns, running late, or being sick themselves. This unreliability was a concern for us as a family, as the care provider couldn’t provide an alternative in these instances, or in many cases, advise my father or the wider family.
With there being few children in the family, it made it difficult to share the load when we were increasingly called upon to assist. It grew from a small amount of help initially, to needing daily visits in order to meet our father’s basic needs. Dad’s lack of ability to drive later in life meant that he was immediately cut off from the outside world. In doing so, he became more reliant on us for simple things like shopping, going to see friends, or going to the doctors. For us as a family, it meant taking time off work, not for ourselves or even our children, but for our parent.
The need for support grew as he became more and more unsteady, he was increasingly at risk of falling and more unable to care for himself. The risk was too great to leave him alone with intermittent care from paid carers. It led in time to one of the ‘girls’ in the family really needing to move in with him as a full-time caregiver.
This may sound like an easy and good solution for someone you love, and for a person who has cared for you all your life, but it means leaving your old life behind. Your job becomes compromised as you need more time off, you arrive late, and need to leave early. As dementia increases, you can’t concentrate during the day as your mind swirls with constant worries of what is happening at home, if he is still there, has he turned off the stove, has he let someone into the house he shouldn’t have, does he know where he is…
You get called multiple times a day with the same questions he has asked you before, and you struggle to answer them while in a meeting. The pressure of two full-time jobs takes its toll, and you soon learn to live with a constant weight on your shoulders.”
This story is not real, rather it is a depiction of the stories which are happening every day in our community. The desire to help, the guilt when you can’t or don’t help, and the distress that is causes, cannot be underestimated.
You love this person – you spent your whole life looking up to them and you owe them for the life you have today. The pressures of wanting to provide the best care for your loved one often falls onto the women in society, and this statistic is increasing as our population changes with more and more people living longer.
The population distribution chart is changing drastically, with statistics predicting by 2036 that there will be a 77 percent increase in over 65s from 2016. That means there will be one in 4.5 New Zealanders aged 65+. There will be equal numbers of people over retirement age, or in education, then there are workers. This is a big change in societal terms, but an even bigger change for those families who are, and will be, impacted by this.
We may think that 40 is the new 20, 60 is the new 40, but 80 is still 80. Our bodies fail us as we age, and often causes us to need help. This help is generally supplied by the children, and more often than not, that expectation falls on the women in that family.
A recent campaign by Carers NZ, She Cares, highlighted that two-thirds of those caring for loved ones are women. More than 200,000 women provide an average of 30 hours a week of unpaid care. Annually, this saves the Government a conservative amount of $10.8 billion.
The cost to society of this ageing population is huge and is being grappled with globally. The provision of residential aged care is costly, and increasingly governments are asserting that the older person themselves wants to stay home, and we should support that.
While I cannot fault what the older person is saying in principle, I think what they are really saying is that they really don’t want to get old and frail. They want to retain their independence, they want to be what they were when they were young. It’s inevitable that we are all going to grow older, but to lose your independence that you’ve had all your life is not easy, and it becomes hard to shake when you can’t do everything you used to be able to.
The corresponding cost which is not considered at all in any Government budget is the cost of the unpaid family carer. In the case of the hypothetical father, he really required 5 hours a day to care for him. He also needed a person every night to be there for him when he woke up and needed to go to the bathroom. This would be a total of 98 hours a week, 52 weeks a year, so 5096 hours per year. Conservative calculations estimate this to be a cost of over $100,000 per annum
At the moment, the only health funding provided by the Government is through a scheme called “Funded Family Care”. It basically allows a person in need of care to employ a family member to get paid through the Ministry of Health. The hourly rate is minimum wage and since the person in need of care becomes an employer they have to obey New Zealand employment and tax laws. The family member employed must live with you and can only work 40 hours a week.
This kind of funding will never cover the corresponding cost of looking after an elderly parent, as it is much more than 40 hours a week and being paid minimum wage. It takes sacrifice and a lot of hard work to be a carer and the Government would have to prioritise family care for the wage to be feasible. The other matter is with the care falling on women family members, they won’t ever be financially stable if their carer wage isn’t enough to cover all their own family expenses. As a carer, they’d be earning around 10 percent less than Kiwis without caring responsibilities, not to mention the actual 24-hour nature of providing that care despite the employment legislation.
There has to be a way for an elderly parent to get the care they need, but without putting the pressure on women family members to step up and sacrifice not only their own careers, but their own family. I think a solution would be to better support carers, not only financially better, which is necessary, but emotionally too. You can’t always just throw money at an issue and expect solutions to come out of it, because it is more than that. There has to be support that encapsulates all elements of life. To be prepared for our ageing population, we need to have a deeper understanding of what it means to look after our elderly parents and family members.
Sadly, this understanding did not come through in the recent Budget. I believe this is a lost opportunity to recognise and support our older people, and their carers. It was Mahatma Gandhi who said “A nation’s greatness is measured by how it treats its weakest members.”