'Love and Caregiving go hand in hand'
'Love and Caregiving go hand in hand'
The Silent Suffering of Caregivers | Amanpour and Company June 5, 2023
If you love someone you will be a carer. This Amanpour interview with Emily Kenway dispels some commonly held myths and presents the stark realities of caregiving.
If you think this doesn’t apply to you, you’re wrong. Everyone is going to live this story at some point.
If you LOVE anyone and they are in a human body, you should expect to provide care, and if you don’t pay attention now to what care looks like, you’ll have the most horrific struggle when it comes.
"Who Cares: The Hidden Crisis of Caregiving and How We Solve It," Emily Kenway relates her experience as the sole caretaker for her mother, who was diagnosed with cancer. The author speaks with Michel Martin about her own experience and the hidden crisis that caregivers around the world are silently suffering from.
[Time stamps and transcribed key points. Duration 18 minutes.]
0:34 Introduction by Michel Martin.
0.59 Emily Kenway shares her personal story of being the primary caregiver for her Mum over 3-4 years. Her mother had Leukemia and Lymphoma. She was around 60 years of age.
2.03 This is happening everywhere, and no one is talking about it.
2.05 Why don’t you ‘just’ pay somebody to care for your Mom?
The common assumption is that you can address the care of your loved ones by paying someone; outsourcing it. There is a complete misunderstanding of care.
When I said my Mom has Cancer it sounds like one event but it isn’t.
It changed every day, every month there are infections, rejections of treatments, there’s depressions, sudden bodily bits not functioning or something changes.
Also, lots of people who need care prefer family members to do the care.
Or they might say they might like to have care through paid workers but pretend they don’t need them for a long time. People don’t admit their own vulnerability. So, you end up having to do the care for a long time until they come to terms with their vulnerability.
Some people can’t speak for themselves – literally or because of cognitive impairments. So, people need to do a lot of work, navigating systems and checking things have been done for the loved one.
AND finally the big reason is LOVE. I would have wanted to be with her (more supported than I was) but I wouldn’t have forgone it.
3:45 You talk about how your world gets so small – bed to bathroom, house to doctor’s office or hospital, did you realise this now, afterwards or when it was happening?
I recognised it when it was happening—the comparison versus other people’s lives. The dimensions of my life had shrunk and changed, and I think this is why caregivers end up so isolated. Because the shape of our lives is so different from what is considered the norm. We almost don’t know how to talk about what our daily life looks like
4.57 The book's title is ‘Who Cares’, who are we speaking about here?
People who are caring for loved ones who are long-term unwell, disabled or frail, and elderly.
Historically this has been a smaller proportion of caregiving compared to parenting, which might be part of the reason why we’re much more used to hearing about parenting.
Nowadays, with medicine the way it is, with longevity increasing ageing populations, it’s becoming more prevalent.
More people are caring longer for sick and elderly loved ones than they are caring for their children.
So, the scales are swinging in the other direction, and we haven’t caught up with this shift yet.
Who are we talking about? It’s women.
Women all around the world are doing the majority of this kind of care as well as parenting.
This is also true in countries like Sweden, where they have very high rates of gender equality by other measures, e.g. in the boardroom. Women are still doing most of this kind of care there.
We‘ve not sorted the equation of income and the need to care for our people, which is fundamental for the smooth running of our societies.
7:05 Why do you think we haven’t figured this out, especially in the wealthy countries – what’s your theory?
The type of capitalism that we have today works on the basis of outsourcing the things we need to keep reproducing and keeping going in life.
If we don’t have paid leave to take care of children or paid caregivers leave to care for sick loved ones – that’s brilliant for business, right? Because they’re not having to price in the costs of that. So profit is made without having to pay heed to that.
There is good news, and changes are happening; there are glimmers of hope.
11:24 If care was normal and understood, what would things look like?
It would look like having strong bonds with people around you, who may or may not be your blood relations.
We need to cultivate the art of creating bonds with people around us who can step in and help support us.
But this takes time, intention and energy. So, one of the key parts is to rebalance work and care:
Dethrone work from its primacy in our lives.
And say, ‘You are human you love people, and these people have breakable bodies.
So, this means you can’t work all the hours and days of your life
Because you’re going to need to do things for those people.
Whether they’re babies, kids with flu, a grumpy teenager or parent with dementia – it’s all through our lives.
UN study – how many workdays are lost to care each year…Well how many care days are lost to work?
There are trials of 4 days working weeks that involve the same amount of pay as 5 days – taking place around the world and businesses are putting this in place as policy.
Caregiver's income – the only way you can get paid right now is if an agency employs you and they happen to contact you.
We have to have a government-supported program for people who want to provide care.
Paid leave for caregivers May 25th 2023 Minnesota
The people who need to shout the most are the most tired - we need others to shout it out for us.
14:38 Why did you write this book and go back into this life with people in it right now?
A moral obligation. I want to use my light force for this. Could I help make a difference?
I couldn’t switch off this knowledge that in every place, community, and street, there is someone right now going through what I went through.
I have to put this in people’s faces because that pain is so real to me. It would’ve felt like an immoral act if I hadn't done this.
17:08 If you think this doesn’t apply to you, you’re wrong. Everyone is going to live this story at some point.
I encounter people who think this is an issue about ‘Other people’ geriatrics; anyone who isn’t them.
For THEIR own good – this is coming to you if you think you’re free today and independent in a grand way, you’re not.
If you LOVE anyone and they are in a human body, you should expect to provide care, and if you don’t pay attention now to what care looks like, you’ll have the most horrific struggle when it comes.
For Emily Kenway’s book & other videos, click here.
Please ‘❤️’ LIKE the article & consider subscribing!
Please share to prime others. We are human; we love and so, we will be carers.
Caregiving in the United States 2020 by AARP, National Alliance for Caregiving, May 14, 2020
The report highlights the nearly 48 million caregivers caring for someone over the age of 18. Key findings include:
Nearly one in five (19%) are providing unpaid care to an adult with health or functional needs.
More Americans (24%) are caring for more than one person up from 18% in 2015.
More family caregivers (26%) have difficulty coordinating care up from 19% in 2015.
More Americans (26%) are caring for someone with Alzheimer’s disease or dementia up from 22% in 2015.
More Americans (23%) say caregiving has made their own health worse up from 17% in 2015.
Family caregiving spans across all generations, including Boomers, Gen-X, Gen-Z, Millennials, and Silent.
61% of family caregivers are also working.
Caregiving in the U.S. Profiles - Take a look on the website for these profiles of caregivers!
The most recent Census 2021 puts the estimated number of unpaid carers at 5 million in England and Wales. This, together with ONS Census data for Scotland and Northern Ireland, suggests that the number of unpaid carers across the UK is 5.7 million.
This means that around 9% of people are providing unpaid care. However, Carers UK research in 2022 estimates the number of unpaid carers could be as high as 10.6 million (Carers UK, Carers Week 2022 research report).
4.7% of the population in England and Wales are providing 20 hours or more of care a week.
Over the period 2010-2020, every year, 4.3 million people became unpaid carers – 12,000 people a day (Petrillo and Bennett, 2022).
59% of unpaid carers are women (Census 2021). Women are more likely to become carers and to provide more hours of unpaid care than men. More women than men provide high intensity care at ages when they would expect to be in paid work (Petrillo and Bennett, 2022)
One in seven people in the workplace in the UK are juggling work and care (Carers UK, Juggling Work and Care, 2019).
Between 2010-2020, people aged 46-65 were the largest age group to become unpaid carers. 41% of people who became unpaid carers were in this age group (Petrillo and Bennett, 2022).
Please ‘❤️’ LIKE the article & consider subscribing!
Please share to prime others. We are human; we love and so, we will be carers.