For Ngaire Booth, the most challenging aspect of being a carer is the sense of isolation that it brings. Going through the pain of seeing her once energetic husband’s decline over the last 22 years from Parkinson’s disease has been profound. She says this isolation can be devastating, and solutions need to be tackled through policy change.
“Being a carer for a loved one is the loneliest of journeys. I have often wished I could adequately explain to my bosses, my friends, what I was going through with the grief and loss due to the progression of Parkinson’s”
When her husband Colin was first diagnosed with the condition, they were living in Australia, away from family. Although they had good friends and neighbours, whenever he was hospitalised, she seldom heard from them. So she carried on alone.
“I’ve been a chef my whole life. I’ve had people working under me, I’ve served hundreds of people a day at the army base. It’s a demanding role, so it was hard staying functional. I did not attend a carer’s workshop until years down the track, because I simply did not know where to turn or even perhaps face the reality of what had invaded our lives.“
When her husband recently broke his leg, she had to appeal to the local hospital not to send him home before her and her husband were confident they could manage. Her appeal brought results, and he was granted an extra three weeks in hospital, but she wonders if there is an opportunity for workshops or information days to be offered to such institutions. But she’s not singling out medical staff. Ngaire says there is a huge need for better understanding in the community at large.
“You’re putting your loved ones needs first, so all your own needs go.” Her own health was often cast aside, she’d forgo mammograms, check-ups with her dentist and diabetes clinic, and other appointments.
“I’m not asking for anything special, just support for routine stuff.”
However, she considers herself one of the lucky ones. After 36 years in Australia, they were able to relocate to their current home in Maungaturoto, where they have a dedicated and loving son, Chris, who helps them through the daily ups and downs. “He checks in on me every second night. He is so generous, absolutely amazing.”
But she points out that some people have much less than she does. That more support systems need to be put in place because so many are struggling.
“In my town, I see a number of folk here carrying the huge and brave task in looking after close family members who need round-the-clock attention, all on their own. Like our neighbour, nursing his mother. A man selling kumara from his gate. He had never heard of organisations such as Carers NZ and was lost when it came to seeking help for his sick wife, soldiering on with no help or support at all. The needs are enormous, and so many people are totally unaware of what is available locally. They can even fall through the gaps unaware of the process of assessment within the health system, simply because no GP or other medical body has referred them or given adequate information regarding what they’re entitled to.”
‘One thing I would really like to see, is workshops that are financially supported and advertised widely. More funding for organisations like Carers NZ for local workshops to be held. These would then create a stronger support system, so carers feel reassured that someone is looking out for them, who is aware of their specific needs and able to suggest concrete solutions. They would provide a platform so people can talk about their challenges. I’ve seen women in tears during workshops I attended in Australia, because finally they’ve met someone who understands your lonely path.”
She herself wishes she’d educated herself earlier in the piece on what to expect. Before her husband retired, he was working at a sawmill. He’s also worked in timber yards, factories and as a gardener.
“All that hard yakker stuff. And then when Parkinson’s comes to the house, you lose the person. My husband was so full of beans, brimful with life, and now all of that is gone. That easy communication and intimacy, none of that is left. He also has arthritis, and the pain relief and medications have created a huge battle with his bowels. It’s the most wearying thing.”
Ngaire and her husband previously lived in Albury and Wondonga, two towns which are a good four hours drive from Melbourne. She says that many of the issues here in New Zealand regarding supporting those with medical conditions, and support for carers, mirror the issues there. All the specialists they needed to see were based in either Sydney or Melbourne, so they’d have to fly or put in hours of driving to see one. And there were some who would only see people who were covered by medical insurance.
The two countries are also similar when it comes to people given inadequate information around entitlements. During her years in Australia, for many years she didn’t attend a workshop or apply for financial support because she was simply unaware she could do so.
However, she says that overall, the level of recognition and financial remuneration of carers is better over the ditch. When living in Albury, Ngaire used to regularly attend subsided carer activities, such as workshops, outings, lunches and morning teas, and a monthly cafe gathering. Carers Australia would hold an annual workshop, and she found she was also entitled to 67 days a year of respite care.
She suggests that it may be because due to Australia’s larger population, therefore people are able to mobilise in larger numbers when it comes to lobbying for change.
“We need to mobilise more in New Zealand, to get our voices heard,’ she says. Especially when taking into consideration that carers save the government billions of dollars a year, she says it’s of utmost importance that there is recognition and remuneration for what they do, and all they give up.
Attending carers groups and meeting other carers helped put things into perspective for Ngaire. To know she wasn’t the only one, and that there were others with worse stories. Although she had a lot on her plate and felt overwhelmed at times, she’d make an effort to reach out to the new friends she made, whether it was through swapping information, making time for a cup of tea, cooking meals for those who’d fallen sick, or simply making a call.
“For those bound to the burden of care, this kind of support is invaluable, both in giving and receiving. Wallowing in self pity undoes you. I used to walk around the house going, ‘there’s nobody who understands how I feel, nobody,’ and I’d be so miserable about it. When I started looking out the window, and caught a glimpse of the lives of those worse off, it changed me. Connection is everything."
