"Women provide the majority of informal care to spouses, parents, and friends, and they play many roles while caregiving" - hands-on health provider, care manager, companion, surrogate decision-maker and advocate. The majority of caregivers are female, and they are they unsung heroes of health.
Thanks to the global coronavirus crisis, there has been an increase in attention on the vital role that nurses and professional carers play in our broader medical and healthcare industries, and rightly so. Before the “clap for carers” trend whipped around the world a few months ago, these were the unsung heroes of health.
By the very nature of their work, these carers are putting themselves at great risk – never more so than now – and that can be a drain on energy and emotion, even if it is a calling.
“Healthcare workers are the beating heart of every health system, and the majority are women with families and responsibilities of their own,” says Maritza Muller, Head of Healthcare at a specialised dementia care provider, called Livewell, with estates in Somerset West, Cape Town and Bryanston, Johannesburg.
Carers for the elderly, and people with dementia, are also having to manage the fact that those in their care are particularly vulnerable right now. There have been numerous instances of Covid-19 devastating a care home or similar institution, so these places – if they are responsible – are on an even more extreme version of lockdown, and home-based carers are taking similar hardline safety precautions. A side effect therein is that these carers and those in their care are now more isolated than ever before.
Even without the threat of coronavirus, though, care work is intense. Muller says carers run the risk of becoming run down and feeling unappreciated. Without the proper rest and support, this can spiral into depression, anxiety, and even anger issues. “Every care provider and her circumstances is different,” she says, “but voicing your appreciation for their work is also part of this. Empathy goes a long way.”
The invisible carer
There is still, however, an invisible carer in the world, a superhero not on the receiving end of the nightly cheer for frontline workers.
According to international research from the Family Caregiver Alliance (FCA), the profile of the typical caregiver is a 49-year-old woman, who works both outside the home and provides around 20 hours of unpaid care work to her mother. Moreover, they say, women habitually spend as much as 50% more time providing care as their male counterparts. These statistics are likely to be higher in South Africa.
Not only are these women doing invisible labour, but they deprioritise their own needs. Alzheimer’s South Africa says that the best thing an individual can do for a person in their care is stay healthy themselves. Failure to do so is feeding into a mental health pandemic, as “more than 80 percent of Alzheimer’s caregivers report that they frequently experience high levels of stress, and nearly half say they suffer from depression”. This is further complicated by the fact women are twice as likely to suffer from depression than men, according to the South African Depression and Anxiety Group (SADAG).
Running on empty
So what are the warning signs of carer fatigue and burn out? Clinical psychologist Louis Awerbuck says to watch out for these signs:
- Struggling to maintain concentration while working;
- Getting especially irritated with patients / the loved one in your care
- Secretly wishing that the day would pass as quickly as possible;
- And not being able to remain in the moment with patients.
Awerbuck says carers must look after themselves. “If you are mentally fatigued, chances are that your own anticipatory anxiety is filtering into your caregiving,” he says. In other words, if you can’t do it for yourself, do it for the sake of the person in your care.
Deeper than a bubble bath
The notion of “self-care” is having a moment in the public consciousness, but in our insta-everything internet culture, the real meaning of this psychological concept can get misplaced or even lost. Yes, to a degree, pouring yourself a bubble bath is a form of self-care, but for an exhausted, burnt-out individual it’s akin to a Band-Aid on a broken leg.
Rather than moments or exceptions in your schedule, psychologists like Awerbuck say managing your stress is a long game that involves establishing a routine, getting exercise, and maintaining regular sleep patterns. He also says to seek support from those who “get it: “Caregivers often feel understood by other caregivers,” he says, “so I suggest staying in regular contact with other carers.”
“Get help even if you think you don’t need it. You will,” says Glynis Williams, whose husband Richard has Frontotemporal Dementia (FTD). Williams and her family initially cared for Richard at home, until ultimately they took the tough decision to move him into a specialised dementia care facility. “It is a complicated space to be in. I am dealing with grief; aware of my loss of a partner while still loving him,” she explains.
And that’s the kind of complicated, heart-wrenching duality that caregivers can face, and why often they feel best supported by those who have lived through the same.
If you are family to a primary caregiver, encourage them to take time out, and enable this by offering to sit with the dementia sufferer. You can also offer a sympathetic ear or shoulder to cry on. Both carers and their families can find help online through support groups - Livewell runs a Dementia care support group on Facebook. This closed group is free to join and provides a place to connect with other caregivers facing similar struggles and experts in dementia care. You can also reach out to SADAG and Alzheimer’s South Africa.
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