In the movie “Overcomer”[1], an unlikely high school cross country runner begins to improve when her dad – who’s dying in hospital – coaches her through her races… She listens to him through her ear bud on a pre-recorded “play by play” of the course as she runs. And she even starts to win.
It’s a perfect image for what you need: a “coach”, a supporter to run alongside you, to give you the input and encouragement you need to run the endless marathon that is caregiving for a family member or friend.
Know that you’re not alone. In a 2021 report on the Global State of Caring[2] the numbers of informal carers/family caregivers were staggering. In the UK alone there are 13,600,000 (20% of the population), while the number rises to 56,400,000 in the US (21% of the population). An average of 10.7% of Scandinavians carry a caregiver role - similar to that in Australia - while the percentage is higher in other European countries.
Your unique challenges mean that you develop an amazingly complex set of skills. You’re nurse, therapist, homemaker, paralegal, event planner, entertainer, crisis manager, time management specialist, project manager, housing specialist, researcher for your family member. This on top of what you do for your husband and kids, plus your day job.
Did I say “husband”?
Yes, because about 60% of informal carers are women. However the percentage of male family caregivers rises with age, so that by age 85 the percentage is reversed and we have 60% of carers who are men.
It’s sobering to realize that 25-34% (depending on the country) of all informal carers are 65 years or older. Caring for their spouse, a sibling or dependent child, or a long-time friend. That’s not easy when your own health may be deteriorating.
Someone told me, at the start of my own caregiving marathon, that they had never recovered physically and emotionally, from the toll of caring. My instinctive response was to believe I could and would do better! But I painfully learned what a huge toll this never-ending burden of care takes on you.
Your mental health may be significantly affected. In fact, studies cite responses from about 40% of family caregivers[3] saying that they need greater mental health support… but they don’t know how to access it, or it’s too costly, or they simply have no time to go searching for it. Can you relate to that?
That’s why it’s so valuable to link up with your own personal “coach”. It will make the difference between finishing the marathon strong, or crawling over the finish line barely alive.
In many countries the lack of long-term or dementia care beds means that the burden of care rests on the family caregiver’s shoulders much longer than it should. As happened to Rick, who was admitted to hospital paralyzed from the neck down.
In time, as the paralysis receded it became apparent that the strain of having cared 24-7 for his wife, who was suffering with dementia, had resulted in his body shutting down. Rest, good nutrition, removal from the stress of caregiving, and lots of physical therapy restored Rick’s mobility, while the system was forced to find a solution to the need for a safe place for his wife to live.
By the time Rick was discharged from hospital many months later, his wife was happily settled in a long-term care residence. He learned to let others look after her while he simply enjoyed volunteering at the residence for a few hours each day.
The end of the story wasn’t as good for my friends Nancy and Irene. They had each looked after a husband - who had increasingly intense care needs – for years. And before their caregiving marathon had ended, their own heart wore out and they passed away.
It’s not an uncommon story, and painfully highlights the extreme physical toll that informal caring takes on the family caregiver.
Governments and healthcare services around the world wrestle with how to support informal carers [who coined that term? You know that your caregiving is anything but informal!].
Your contribution to the economy is massive. In the UK the annual contribution is estimated at £132 billion[4], in Canada $97 billion[5], in Australia and NZ it could be over $78 billion[6], in Europe it represents at least €576 million[7], and in the US it’s over $522 billion[8]! [Different studies will give different numbers. It’s a massive contribution no matter how you analyze it.]
Clearly any government would be quite unable to pick up the tab for everything you do.
But even if you were paid an allowance/stipend for informal caring – as is the case in some countries –would that be the solution?
Undoubtedly your financial stress would be less. You might be able to afford a massage occasionally, plus the cost of hiring someone to stay with your loved one while you go for the massage. But the endless burden, and your inability to add hours to your day – to find time to deal with everything – that doesn’t change. That’s something no amount of government money would change. So it’s crucial that you build and maintain your own resilience – spiritual, emotional, mental, physical.
That support person I mentioned above would be key to your building resilience. Their own marathon of care has taught them secrets of resilience they’ll pass on to you, they’ll be your safe place to vent, they’ll hold you accountable, and they’ll be cheering you on every step of the way so you can – and will – finish strong.
If you are interested in learning more about how a coach could help you as an informal carer/family caregiver, please visit https://kingdomcaregiverscoach.com and connect with Gail for a free, no-obligation initial consult.
[1] Overcomer. Directed by Alex Kendrick, Affirm Films, 2019.
[2] Global State of Caring. International Alliance of Carer Organizations (IACO), 2021.
[3] Supporting the Supporters. SunLife and CARP, June 2021.
[4] "Unpaid Carers Save the UK billion a year - the cost of a second NHS" Carers UK, 12 November 2015
[5] RAPP Infographic: Value of Family Caregiving in Canada. The Vanier Insitute of the Family, February 22, 2022
[6] The Value of Informal Care in 2020. Deloitte Australia, May 2020.
[7] Luz María Peña-Longobardo; Juan Oliva-Moreno. "The Economic Value of Non-professional Care: A Europe-Wide Analysis." International Journal of Health Policy and Management, , , 2021, -. doi: 10.34172/ijhpm.2021.149
[8] Kunkle, Frederick.“Cost of family caregiving in U.S. estimated to be $522 billion a year, study says.” The Washington Post, 28 Oct. 2014, https://www.washingtonpost.com › national › 2014/10/27