Dementia carers who ‘haven’t slept in years’ are suffering burnout
LONDON: Dementia carers, who haven’t slept in years, are suffering burnout and creating a new class of people in need of their own special care.
Sarah Carberry has not slept properly in years as she looks after her 94-year-old mother, who suffers from Alzheimer’s disease and lives in a granny flat on Carberry’s isolated Marlborough Sounds property.
At 3am the motion sensor goes off. Sheila Gemmell is up pacing and rearranging furniture again.
Later, Sarah Carberry can hear her 94-year-old mum’s breathing change over the monitor, and shoots out to the granny flat, knowing she is having another of many mini strokes.
The Marlborough Sounds resident is under a constant barrage of alarms, bells, and monitor sounds in order to help her mother live out her final days – or 14 years and counting – at home with Alzheimer’s disease, the most common type of dementia.
She is one of the many carers in Aotearoa burning themselves out while struggling to find underpaid and undervalued professional dementia carers.
An estimated 62,000 people were living with dementia in 2016, costing the Government $1.7 billion. By 2050, this will rise to 170,000 people, costing $5b.
Three dementia organisations collaborated to develop the country’s first ever Dementia Action Plan. The Government committed itself to supporting the targets in its 2020 health policy.
In the meantime, carers like Carberry are working around the clock with no hope of true respite.
“It’s a bit like having a toddler that doesn’t sleep. And you can’t reason with them.”
Carberry hasn’t slept properly in years. “Even when I’m sleeping, I’m not sleeping.”
In October, her mum worked out how to unlock her door and was found down a 5-metre bank.
A week ago, her mother turned the shower on and stretched the hose out to the living room to “water the grass”. The flat was “like a sauna”, and the carpet completely soaked.
The shower hose is now tied up with a cable tie.
She often leaves taps on, so Carberry removed all the sink plugs.
Now when the temperature changes in the purpose-built granny flat, a sensor goes off. When Gemmell, who is partially sighted due to macular degeneration, and hard of hearing, stands on the doormat, a “very, very loud” alarm goes off, and there are several bells set up that she rings for help.
“I can’t go away, can’t go out. I have to organise babysitters if I need to go to town,” Carberry says.
Caring for her mum has been an amazing experience, but she is fed up.
Her last overnight break was for two nights in Christchurch three years ago for a conference, and a long weekend holiday eight years ago in Wellington.
Carberry was born in New Zealand, where her mother lived for 30 years, but they were living in England when she was diagnosed, aged 80.
She went into a care home in England from 2007 until 2010, where she was put on a range of anti-psychotic, blood pressure, sleeping and anti-depressant medications.
Carberry decided to move home to New Zealand with her mother and children, when Sheila said to her, “I just want to die at home in my own bed”.
“This should be a choice for everybody.”
She bought land in Mahau Sound, an hour from Blenheim.
Next to a home for herself, she had just enough money to build a granny flat for her mum.
Groceries are delivered by the postal service, and Carberry can manage not going to “town” for up to eight weeks.
But her mum’s Alzheimers will get worse.
“We’re being told we need to keep our loved ones at home as long as possible, but how?
“It’s all very well telling us, ‘You’re doing a great job’. I don’t need to hear that, what I need is real help, real support.”
Five years ago, Carberry trained in end of life care, adding to 20 years of experience caring for her father, cousin, and mother with dementia.
A year later she began weaning her mum off all drugs except anti-depressants, and she is now a big advocate for medical cannabis.
“[Mum]’s actually happier than she’s ever been.”
Carberry then founded the Farewell Services Trust, offering support for local people wanting to die with dignity at home. “Working with other families that are dealing with similar end of life care issues helps to keep me grounded,” she says.
The trust team has helped 17 families over the last two years who are caring for loved ones at their end of life – calling on communities for things like shopping, collecting library books, and giving rides to appointments.
Even with a caring and supportive community, “it’s hard to ask for help”.
Carberry saves the Government a lot of money keeping her mum at home, but spent precious hours at the Ministry of Social Development (MSD) in 2013 enquiring about getting a carer support living payment, only to be told she does not qualify.
She earned $2000 over the “thirty or so thousand dollar threshold” in the means-tested fund due to child support from her ex-husband to raise their sons.
MSD regional commissioner Craig Churchill sympathises, but says it is bound by the law it operates under regarding payments it can make.
How much is available is dealt with on a case-by-case basis, but they can access a range of welfare, social, and health support.
It is committed to its 2019-23 Mahi Aroha carers’ strategy action plan, to improve the wellbeing of carers.
Churchill encourages Carberry to reapply, and see what other support might be available, but Carberry cannot fathom navigating the multiple agencies again when suffering from “carer burnout”.
Carers qualify for 56 days of carer support respite care a year through the Ministry of Health (MoH), with only $75 to pay a carer per day.
“Who in their right minds is going to work for that?”
She has never been able to use the “insulting” amount, and her mother’s pension cannot top it up.
For seven years, a lovely neighbour cared for Gemmell twice a week for four hours, paid for by Access Community Health, but “had enough of the system”. Instead, she now volunteers once a week, unpaid either showering or giving Carberry’s mother much-needed companionship.
Those eight hours of Access care were cut down to two two-hour blocks, which is “pointless” given it is the total travel time.
Those with dementia need familiar faces being present for them, not stressed carers rushing in for 15 minutes before rushing off to the next client.
“That’s why carers are leaving, they are underpaid, undervalued, and made to feel like robots,” Carberry says.
She found a “wonderful private carer” in Blenheim, but cannot afford her $25 hourly rate.
Keeping people with dementia at home safely is a priority of the MoH, and a spokeswoman says families’ hard work is “recognised and appreciated”.
Each district health board (DHB) has its own way of having needs assessed, and support allocated where needed.
Some may pay the full cost of carers to take a break, or they may subsidise that cost.
Services funded can include personal care like bathing, dressing, eating and toileting, and home management like meal preparation and cleaning. They can also offer carer support and respite care.
The carer support subsidy, administered by the MoH and DHBs, is designed to help family carers with “some of the costs” of securing short-term relief care services.
Carers have to bridge the shortfall.
Alzheimers Marlborough’s purpose-built facility in Blenheim hosts up to 20 clients per day for day care, and a twice-weekly cafe group where families come from as far as the Sounds.
Manager Catherine Donnelly says it holds fundraising golf tournaments, antique fairs, and sells pine cones to help with costs not covered by the ministry.
More people are staying at home longer – whether for financial reasons, or due to a pact made between loved ones.
Carers are “at breaking point”, with no respite beds available when its 200 clients’ carers need to use their allocated days of respite.
Dementia Canterbury manager Darral Campbell says there should be a minimum standard for dementia care no matter where you live. Especially while most with dementia live at home.
But as with all health services, access is harder for rural families.
There isn’t the same pool of suitable people to go into homes to help, and the only way around that is “local solutions for local problems”.
Or extra funding. It fundraises for two-thirds of its costs.
Some younger-onset patients pay to have an in-home carer, or family give up work to care for them – depending on what they can afford.
“There are a lot of services for people living with dementia. It’s just we’re all charities doing them, with only a portion of the costs covered.”
Funding is centre stage in the action plan, but how will it look at a grassroots level?
All the ministry will say is the next steps are “under consideration”.
Psychiatrist of old age Matthew Croucher, who was part of the team that created the document, says while the Government prioritised implementing it this term, the resources required have not been agreed or set aside.
Government and health and social sectors have not yet grasped the challenges posed by the ageing population and dementia, like the World Health Organisation.
A lack of understanding about dementia leads to stigma and nihilism, people not seeking a diagnosis, and the health system not investing in timely and accurate diagnoses.
He is very concerned about carer burnout. The care support government system was designed to deliver a set number of days in temporary rest home care to give carers of family members with age-related disability a break.
But if rest home care is unavailable or unsuitable, the only other option is to convert that payment into a daily rate of less than $80 per day.
To pay someone in your home hourly, “you can see how this quickly disappears and is not a meaningful help”.
The action plan is asking for flexibility for families to use funding in ways that will.
Croucher hopes Wednesday’s national health service announcement means it will be reviewed.
Carberry loves the idea of her mum being herself with freedom and normality, somewhere like the CARE Village in Ngongotaha, based on Dutch dementia village De Hogeweyk.
Set up like a town, residents live in homes with half a dozen others with similar interests. Dementia sufferers are not kept segregated or fenced, and are in a “home away from home”.
She believes they are the care of the future.
For now, Carberry uses yoga and meditation to relax, and chatting with neighbours breaks up the “groundhog days” she wouldn’t wish on anybody.
“You can’t see any relief from that until she dies.”
She chooses to see the funny side of incidents like the shower flooding. “All I can do is put one foot in front of the other, for Mum.
“I can see light at the end of the tunnel, it will end one day.”
