Shannon Douglas of Whangarei says a lot more consideration and support is needed for New Zealand’s 1m+ family, whānau, and āiga carers. 

“We are keeping our loved ones out of care homes and institutions so they can remain in their own homes for as long as possible. It’s not always an easy task being a full-time carer. Many sacrifices are made and there is little to nothing available by way of support, particularly respite.”

“We do it out of love for our loved ones, and while there are many rewards on a personal level, we cannot survive on that alone.”

Shannon moved in with her Mum in July 2022, when her need for care became obvious as her dementia advanced and it was no longer safe for her to live alone. Shannon speaks warmly of her Mum and their relationship.

“Mum has always loved gardening, she always had beautiful flower beds, a thriving vegetable garden, flourishing fruit trees, and chooks. She was also sporty and did voluntary work for many years. On top of all that she was always there for us, so I am happy to give her the support she deserves now.”

When Shannon moved in to care for her Mum, she intended to keep running her home-based ‘virtual assistant’ business alongside her caring role.

But it soon became evident that her Mum’s constant support needs meant it was not feasible to work.

“I wasn’t able to meet deadlines so had to close my business,” says Shannon.

Carving out time for herself is another challenge. When planning her attendance at a four-day online course, Shannon was unable to access a respite service to support her Mum over that period.

“I have been allocated 14 days of Carer Support Subsidy at the rate of $75 per day to go towards engaging support for Mum while I have some respite.”

“I contacted local rest homes, but they are fully booked and have waiting lists for respite, especially for those like Mum who have dementia. Even if there was availability, there is a large gap between the Carer Support rate and the cost of residential respite care. The shortfall can be over $500 per week.”

Shannon then contacted a local care agency to see if they could send someone to be with her Mum while she attended the course, but was quoted a fee of $48.82 per hour plus a $250 registration fee.

“That equates to $1909.88 for four 8.5 hour days. Carer Support would only cover $300 of that, leaving a shortfall of $1609.88.”

If Shannon’s Mum lived in full-time residential care, the cost to the Government would be $1,200 to $1,300 a week. Shannon points out that residential care facilities support multiple residents, employing teams of nurses, support workers, cooks, cleaners, and laundry services, with staff doing eight hour shifts and having two days off each week.

Full-time, live-in family carers like Shannon have all of those roles 24/7.

Financial support for carers is poor, with the Supported Living Payment amounting to $384.92 per week for those who are eligible.

“There are 168 hours in a week, so the SLP works out at $2.29 per hour for carers like me.”

While live-in family carers are not ‘working’ 24/7 and do get to sleep at night, they they still need to be available at all times.

“It’s hard to feel valued when you do the sums,” Shannon says.

She is conscious of the degree to which caring has reduced her own opportunities.

“Carers don’t get the chance to have much of a social life or time to nurture their own needs. Simple things that most people take for granted aren’t always possible – I can’t leave Mum on her own.”

Shannon’s only regular time off is three hours on Tuesday afternoons when an Age Concern volunteer comes to sit with her Mum so she can have a bit of time for herself.

“But I can’t consider that respite as such, as there is little that one can do in three hours, and catching up with friends in that time is often impossible because they are working.”

“Apart from Tuesday afternoons I’ve had two weekends off since I moved in with Mum, and 10 days off when I injured my wrist and was in a cast. My best friend would come and wash my hair for me and chop up vegetables because I couldn’t do that, let alone look after Mum. So one of my siblings took Mum to stay with her in Tauranga.”

Shannon has many supportive friends here and in other countries. She stays connected by phone and social media, and local friends visit when possible.

“I count my blessings, but I can’t make plans because I am dependent on having someone take care of Mum if I’m not there. Spontaneity and the freedom to come and go, which most people take for granted, are things of the past because there is just not the level of support carers need available to us, particularly when considering caregiver burnout.”

Shannon was embarking on an awareness campaign for carers when she learned about the Carers Alliance’s We Care campaign. Her drive is solidarity: wanting other carers to feel better supported, understood and less alone. 

Her message is that when family carers are well supported, they are better able to provide high quality care to their loved ones, improving the overall health and wellbeing of those they assist, as well as their own. 

Shannon has signed the We Care campaign petition, and is encouraging others to do so. She is also taking the message to local MPs and media outlets on behalf of all carers.

“Everybody really needs to consider that one day it might be them that needs a full-time family carer, or finds themselves in the position of being a full-time carer. What if it was you … ”