The Silent Suffering of Caregivers

PAULA NEWTON, CNN INTERNATIONAL ANCHOR: Now, looking after loved ones in need may seem like a simple decision, but caregiving, as so many of you know is no small task. And those that do it yes, are usually women and are often forced to make major life changes with very little support. Now, in her new book, “Who Cares: The Hidden Crisis of Caregiving and How We Solve It”, author Emily Kenway shares her experiences, the sole caretaker for her mother who was diagnosed with cancer. And she joins Michel Martin to discuss why governments need to better value this kind of vital work.

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MICHEL MARTIN, CONTRIBUTOR: Emily Kenway, thank you so much for joining us.

EMILY KENWAY, AUTHOR, “WHO CARES: THE HIDDEN CRISIS OF CAREGIVING AND HOW WE SOLVE IT”: Thank you so much for having me.

MARTIN: You know, I have to say that a number of colleagues of mine read your book. And we all had the same reaction which was we all found ourselves having to take breaks because it was just too real. If it’s not too painful, even now, what — tell us your personal story, if you don’t mind, as briefly as you can.

KENWAY: Yes. So, my mom, she got cancer, and she had that, kind of, classic experience of feeling more and more tired, you know. At that time, she was a, kind of, powerful, busy, independent woman, around 60. And unfortunately, yes, she had leukemia and lymphoma. And so, she was extremely unwell for three or four years. And in amongst all of this, you know, she had many types of chemotherapy. She had a stem cell transplant, like, all sorts of things happened. And because she was single, and because my sister has little children, and I don’t have children yet, I was her primary caregiver. And you know, it just turned my life upside down. I was living just a classic young adult’s life, you know, in London, out and about, building a career in something I felt really passionate about. And suddenly, it was effectively like I became a parent overnight, but apparent in a very sad situation. And it completely changed how I thought about the world, and also made realized, this is happening everywhere and no one is talking about it.

MARTIN: I think there are those who would say, why don’t you just pay somebody to take care of your mom in those years when she was really declining.

KENWAY: Yes, so it’s actually a very common assumption that you can address the care of your loved ones by paying someone, by outsourcing it, yes. And one of the things I’m very clear about in the book is why this is a complete misunderstanding of care. So, my mom’s illness is a classic example where I say she had cancer and it sounds like one event. And it changed every week, every month, you know. There are infections, there are rejections of treatment, you know, there’s depression, there’s sudden bodily bits not functioning, or something changes. Also, lots of people who need care prefer to have family members do it, right, or they might say they’d like paid care workers. But they pretend that they don’t need care for a really long stretch of time. They don’t want to admit to their vulnerability, which means you do actually have to do it while you wait for them to come to terms with their own vulnerability. Lots of people who need care can’t speak for themselves, either literally can’t speak or have cognitive impairment, right? Strokes and dementia and so on. So, you do actually need to do quite a lot of work. Navigating systems for them, checking that things have been done for them, and so on. And the final reason is love, right? Like, yes, I loved my mom, profoundly. And so, I would have wanted to be with her more supported than I was, but I absolutely wouldn’t have foregone it.

MARTIN: And one of the things that I think you capture so well in your book is how — and in other writings, is how your world gets so small. You know, it’s from the bedroom to the bathroom.

KENWAY: Yes.

MARTIN: It’s from the house to the doctor, or to the hospital. I just wonder how you realized that? Was it when it was over or while it was going on?

KENWAY: It was definitely while it was going on because, you know, I, sort of, very aware that friends were living normal lives and I wasn’t. And there were, you know, a couple of times I’d arranged to go on holidays with friends, you know, climbing in Scottish mountains and things like that and then wasn’t able to go because my mom had a turn for the worse, or I couldn’t get someone to cover me to look after her. And so, it was very apparent in a very practical, very physical way, that my — the dimensions of my life had shrunk and changed. And I think this is why caregivers end up so isolated, right, because the shape of our lives is just so different to what is considered the norm. We almost don’t even know anymore how to talk to people about what our daily life looks like.

MARTIN: As we mentioned, the title of your book is “Who Cares”. Who are we speaking about here? When you talk about caregiving, who were you talking about and what are you talking about? And how many people are we talking about?

KENWAY: The caregiving I’m talking about is people who are caring for loved ones who are long-term unwell, disabled, or frail and elderly, basically. And actually, historically, this has been a kind of smaller proportion of caregiving than 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, aging populations. It’s becoming much more prevalent and indeed people are caring for sick and elderly loved ones for longer than they cared for their children now. You know, people are living with advanced dementia for 20 years or so now. So, the scales are kind of swinging in the other direction and we haven’t caught up with it. We’re talking about millions of people in each country. 56 million, roughly, in the USA, about 6 million in my U.K. And also, the answer to your question, “Who Cares”, you know, who are we talking about is women, right? A friend joked I should subtitle the book, “Women”, because it is still women all around the world who were doing the majority of this kind of care, as well as of course, often, parenting. And that’s also true in countries like Sweden where they have very high rates of gender equality by other measures. So, like, in the boardroom, for example. It’s still women who are doing most of this kind of care. So, it’s definitely an issue that is both of, kind of, feminism and of politics more broadly. And it’s very related to the childcare issues that we have, you know. That we have government policies in the U.K. as much as in many other countries, which seemed to pretend that childcare doesn’t need to happen. You know, this idea that we need an income, and we have people we need to look after. We have not managed to, you know, sort that equation out at all even though it’s fundamental to the smooth running of our societies.

MARTIN: Why do you think it is that we have not figured this out, especially countries that are wealthy, in, sort of, global terms? What’s your theory about why it is that it’s so much — so little a part of our understanding of our society?

KENWAY: There are a few reasons why we’re completely failing on it. And one of them is the type of capitalism that we have today. So, economists would say that capitalism, as we’ve currently constituted it, works on the basis of outsourcing the things that are needed to keep reproducing and taking care of life, right? To not cost in those things, and we can see that very, very clearly in our working policies, you know. If we don’t have paid leave to take care of children or paid caregivers leave for sick loved ones, that’s brilliant for business ostensibly, right? Because they’re not having to price in the costs of that. So, profit is able to be made without having to pay heed to that. Now, actually, thankfully, there are voices in business spaces that are kind of seeing the light. Perhaps because they’re having experiences in their own worlds that are telling them this is untenable. Perhaps because there are women leaders more and more. But also, because there is now analysis that says, actually it’s good business sense to have proper care policies, you know, from a turnover and productivity perspective and so on. So, there are kind of glimmers of hope there. As you say, there’s also the problem that we have a very gendered perspective on this. Of who ought to be providing care in society. Now, it’s not for me to say what is the right thing for someone to do with their life or not, and I certainly would never have wanted not to care for my mom. I wish she hadn’t been sick, obviously, but it was not something that I would ever have, sort of, given someone else to do. However, we do need to understand that people providing care in the home, that’s not without a cost, right? There’s a cost there and it’s a cost being borne silently by women around the world. You know, it strips us of income, it strips all the women of pension savings. So, we are going to have a lot of very elderly women who are absolutely impoverish just because they cared for someone they love.

MARTIN: I am — I was struck by the reporting you did all over around the world with people who are in this circumstance all over the world. And I just wondered if you would share just a couple of stories that really struck you.

KENWAY: Yes, thank you. It was a very important thing. I felt to do a global portrayal of it. And so, one of the people I encountered was a young woman called Ayisha (ph). We’re about the same age, which was quite beautiful. She is in Kathmandu in Nepal, and I, at that time was all the way in London. So, you know, completely different worlds, different cultures, thousands of miles apart. Ayisha (ph) had helped her mom care for her dad who had cancer, and then her mom had cancer shortly after that, and she had been her mom’s primary caregiver. So, we sort of had similar paths thousands of miles apart. Ayisha (ph) had originally been midway through an environmental economics degree and had left that and had never been able to go back because of these caring responsibilities. So, you know, like many caregivers, she lost a dream that she had. And that is, you know, one of the major effects of our failure to really support caregivers. She also had had major, kind of, physical repercussions, from extreme stress she was under. So, she had a brain aneurysm a year after caring for her mom. And she was in a country where there’s even less, kind of, government provided services than the U.K. or the U.S., you know. So, it really had been completely engulfing for her. And she was on her way out of that when we met. And, you know, it’s my great hope that many of the people I spoke to around the world have, kind of, different futures coming down the line.

MARTIN: What would it look like if understanding that care is going to be part of your life at some point, were normal and were understood. What would that look like?

KENWAY: Yes. Well — so, I think there’s layers to this. And on — so, on the most, kind of, day-to-day personal level, it would look like having really strong bonds with people around you who may or may not be your biological family, right? As we know, we’re getting smaller families, people are living further apart. So, we need to start cultivating the art of creating bonds with people who are around us and who can step in and support us. But of course, in to amount of time and attention, or energy, right? And we don’t have that if we’re all working all the time. And so, one of the really key parts of this is to rebalance work and care, right, to dethrone work from its primacy in our lives. And to say, you are human. You love people and those people have breakable bodies. This means you cannot work all the hours and days of your life, because you’re going to need to do things for those people, right? Whether they’re babies or just a kid with the flu for the week or a grumpy teenager, or a parent with dementia, you know. It’s all through our lives. So, we have to rebalance this. I read a report from the U.N. that talked about how many workdays I lost to care worldwide each year. Well, how many care days are lost to work, right? But coming back to your point, there are trials of four-day working weeks that involve the same amount of pay as people had for five days, so no loss in pay. And they are taking place around the world. And they are working really well because people work better when they work for fewer hours. And there are lots of businesses now deliberately putting that in place as a policy. We also need to have caregivers’ income, right? It’s whole crazy that if your loved one needs care, the only way you can get paid properly to look after them is if you went and enrolled in a care agency and became, you know, a home health aide, and then they happened to contract to you. That makes no sense. We have to have a government supported program of income for people who need to provide care. Now, we are seeing in the U.S. more and more states introducing paid leave from jobs for caregivers, which is really exciting. There’s a man in the book called Eric who cared for his husband in Minnesota, who passed away of cancer. And Eric e-mailed me just a three days ago saying, Emily, we’ve won paid caregivers leave here in Minnesota, and I had to tell you. You know, it happening. It’s happening there. It’s happening in lots of states. And so, I think these things are possible, but they will not be possible unless we all shout for them, basically. And the people who need to shout the most are the tiredest, right, they are the caregivers. So, we kind of need everyone else to be doing it as well so that it’s not all on those who are already being broken by the system that we have today.

MARTIN: You know, I don’t want to go into all of the details but, you know, watching someone you love wither away is so hard. And, you know, you were there 24 hours a day, seven days a week for years. And I just wondered why is it that you didn’t just want to walk away from it? What made you want to write this book and, basically, go back into this life with other people who are living it right now?

KENWAY: You know, I think that, for me it felt like a moral obligation. I am much younger than the norm for caregivers. And so, I felt like can I use some of my, kind of, life force, you know. I don’t have children yet. I have this, kind of, space and energy where I could do this thing. And, you know, could I help make a difference? I couldn’t switch off the knowledge that in every street, in every neighborhood, in every workplace and community there’s someone right now going through what I was going through, you know. And that felt, to me, like I have to write about this. I have to put this in people’s faces because that pain is so real to me. It would have felt like an immoral act not to do so.

MARTIN: What was the hardest part of it?

KENWAY: The hardest part of my experience was watching how hard it was for my mom, if that makes sense. So, you know, watching her be so desperately unhappy to be dying. You know, she got sick. She worked very long hours her whole life, you know. Sometimes six days a week, work, work, work, work, work. She got sick just as she was at retirement age. And the only time when she was well enough during her illness to potentially go out and about was a couple of months which overlapped with the same time as the first U.K. lockdown, so nothing was open. And so, I witnessed a kind of depth of suffering that taught me a lot, I would say, about how I intend to live my life. And how I hope and able to look back on my life if and when I come to a place where I am having to witness my own incapacitation in that way.

MARTIN: So, before we let you go, there is one thing that I think you say over and over again in the book which is that, if you think this doesn’t apply to you, you’re wrong. Everyone is going to live this story at some point, you know. Everyone. And I wonder who do you have in mind here when you say that?

KENWAY: Yes, a friend of mine described the book in an early stage as a confrontation, and it is. Because I encountered, and still every day encounter people who think that this is an issue that is about other people, you know. That this is something about geriatrics or, you know, just people who aren’t them. And I just want to shake them and say, for their own good, you know, this is coming to you. If you think you’re free today, if you think you’re independent in some kind of 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’re going to have the most horrific struggle when it does come. So, please listen to us and that’s what I’m trying to do in the book. I’m saying, listen to us. Please make the change that we need.

MARTIN: Emily Kenway, thank you so much for talking with us.

KENWAY: Thank you.

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