‘It can feel so lonely': Bruce Willis's wife says caregivers 'need care too' after Gene Hackman and Betsy Arakawa's deaths. This Canadian mom agrees
The Ottawa-based mother of two has fed, bathed and dressed Summer over the years. That's all on top of managing paperwork, appointments as well as coordinating speech therapy and social activities.
This article is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment. Contact a qualified medical professional before engaging in any physical activity, or making any changes to your diet, medication or lifestyle.
Like many caregivers, Dauz has experienced the overwhelming stress, isolation and emotional toll that comes with the role. 'It can feel so lonely, because so much of what happens happens behind closed doors,' Dauz told Yahoo Canada. 'Yet I know I'm not alone. There are millions of caregivers in Canada.'
Now, Dauz has transformed her personal experience to help other caregivers take control of their lives and prioritize self-care through coaching. She's found ways to prioritize self-care and wellness, and now she's sharing her strategies with other people who provide care.
I'm in the trenches with you, and I still find time.Nicole Dauz, Ottawa-based caregiver
'When people come to me, they're usually at the end of their rope,' Dauz said. 'They are overwhelmed, stressed, completely burnt out and very frustrated that people kept talking to them about self-care instead of helping them see the how.' That's when Dauz reassures them she's been there, too: 'I'm in the trenches with you, and I still find time.'
Conversations around support for caregivers have risen in recent weeks following the death of actor Gene Hackman, 95, who died of heart disease with complications from advanced Alzheimer's disease. His wife and dedicated caregiver, 65-year-old Betsy Arakawa, likely died days before Hackman. They were both found dead on Feb. 26.
In response to the couple's deaths, Bruce Willis's wife issued a statement calling for people to look out for caregivers like Arakawa and herself, saying 'caregivers need care too.' Emma Heming Willis, 46, has been taking care of the Die Hard actor, 70, since he was diagnosed with frontotemporal dementia.
'I think that there's this common misconception that caregivers, they've got it figured out, they've got it covered, they're good,' Heming Willis said on Instagram. 'I don't subscribe to that. I think that we need to show up for them so they can continue to show up for their person.'
Liv Mendelsohn — executive director of the Canadian Centre for Caregiving Excellence (CCCE), a program of the Azrieli Foundation — explained how Hackman and Arakawa's situation shows the importance of caregivers.
'The case of Gene Hackman illustrates a really tragic situation where someone who is caring is so vital to the person receiving care,' Liv Mendelsohn, executive director of the Canadian Centre for Caregiving Excellence (CCCE), explained. 'When that caregiver is unwell or can't continue, it really puts the person receiving care in jeopardy.'
Caregiving is a responsibility that touches many families at some point in time. According to Statistics Canada, almost eight million Canadians provide care for family members or friends with a long-term condition; a physical or mental disability or problems related to aging.
The CCCE found half of Canadians will be a caregiver at some point in their lives. Despite these numbers, many caregivers struggle, with little support for themselves.
Caregiving is not a burden. We care because we love.Liv Mendelsohn, CCCE
'Almost half of caregivers express feeling tired, worried and overwhelmed because of care responsibilities,' said Mendelsohn. 'There really isn't enough support for people.' The centre's research found caregivers provide on average more than 30 hours of unpaid care each week, which is nearly the equivalent of a full-time job.
'The research shows that the health outcomes for people who need care really, really suffer and decline when the caregiver is in distress,' Mendelsohn said. On the other hand, when the caregiver thrives, the person receiving care has better health outcomes.
'Caregiving is not a burden,' Mendelsohn said. 'We care because we love. But unsupported care can be very challenging and the lack of systemic supports is where the rubber meets the road for caregivers.'
Dauz indicated caregivers who are in survival mode are going to aim for quick wins. She suggested caregivers find 10 or 15 minutes of time each day for self-care, which she noted can be anything that brings joy.
She also championed practicing deep breathing as a way to release stress and to allow your body to relax, wherever you are. Physical touch is another tip: 'I'm very grateful my 16-year-old daughter is very affectionate, so I often will hug her as a way to just feel better. It's beneficial because it will also calm her down, so we're able to calm each other down.'
Mantras can come in handy, too. Dauz noted she tells her coaching clients to choose a mantra to repeat to themselves in moments when they feel agitated when giving care to someone, like 'it's not their fault' or 'I love her.'
'That's a pretty easy mantra that's enough to remind me of what's important and allows me to take a minute to focus on my actions instead of reacting to what's going on,' Dauz said. With these tips in mind, Dauz said she hopes caregivers can take a small amount of time daily to make their own wellness a priority.
A number of free programs across Canada are designed to support caregivers' mental health. That includes six-week mindfulness programs offered through the Centre for Addiction and Mental Health, which teaches family caregivers how to learn and practice coping skills. Provincial caregiving organizations in many provinces also offer navigation hotlines where caregivers can call and get support.
You need to look at who else ... can support you on this journey.Liv Mendelsohn, CCCE
'One of the most overwhelming things a caregiver faces is navigation: Having to Google things at three in the morning, or tracking down blood tests results or making sure all the medications are being given properly,' Mendelsohn said. 'So having someone to support that navigation, whether it's through telehealth lines, support groups or peer mentoring, is so important.'
In addition to reaching out to provincial organizations for help, caregivers should identify who can be in their care circle, Mendelsohn advised. 'It can't just be one caregiver. You need to look at who else — in the family, among friends, the neighbours or the community — can support you on this journey. ... Caregiving has a lot of ups and downs, and it can be a real rollercoaster. So make sure that you have a strong circle of support for the person you're caring for and for you.'
That can include dedicated organizations depending on the condition of your loved one, such as organizations centred around Alzheimer's disease or disability support organizations.
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While self-care is important, the CCCE is also advocating for systemic support for caregivers: 'Self-care is really important, but self-care has to be in a context of larger systemic supports. It can't just be, 'Take a bubble bath,'' Mendelsohn said. 'If you're caring for someone who has really high support needs and needs to be with you all the time, you literally cannot take a bubble bath.'
In an effort to better support Canadian caregivers, Mendelsohn and her team spoke to thousands of caregivers across the country to understand what they need to ease their struggles.
The result is a National Caregiving Strategy for Canada. That document advocates for stronger workplace supports, like improved leave policies for caregivers, better access to disability tax benefits and a caregiver allowance to ease financial strain, among other objectives. The latest campaign, Act on Care, allows people to easily send a letter to their local MPs to champion caregiver support on a federal level.
Above all, don't be afraid to ask for help if you need it. 'It's never too late to ask for help,' Mendelsohn said. 'It's never too late to pick up the phone and call one of these caregiver lines.'
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