The Silent Suffering of Caregivers | Amanpour and Company

In her new book, "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.

Originally aired on June 5, 2023

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Amanpour and Company features wide-ranging, in-depth conversations with global thought leaders and cultural influencers on the issues and trends impacting the world each day, from politics, business and technology to arts, science and sports. Christiane Amanpour leads the conversation on global and domestic news from London with contributions by prominent journalists Walter Isaacson, Michel Martin, Alicia Menendez and Hari Sreenivasan from the Tisch WNET Studios at Lincoln Center in New York City.

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[scratch]

Thank you for bringing attention to this. The part about being tethered to a few rooms with the only outside experiences being a doctor, pharmacy and grocery store really made me cry. I did it for 16 years and am proud of myself for the job I did. You can't conceptualize the job unless you're knee deep in it.

[JamesOfEarth]

Spot on. My brother and I are doing our best with 24/7 care of our 95yo mother. She can’t walk on her own and is increasingly suffering dementia. We’ve been doing it for years. It’s brutal.

[quddusquddus]

What a sentence: “The silent suffering of caregivers.” This suffering is all around and all the lips are sealed. Except the writer of the book. What a great contribution!

[mattolear]

As the stay-at-home dad of a profoundly disabled child, I applaud Ms. Kenway for calling attention to the plight of caregivers and Amanpour & Co. for amplifying her voice.

[gretahelphrey]

Wonderful, difficult discussion! I am “one of those” women who lost a decade of my life to intensive caregiving of a loved one. In my case, my husband “survived” a catastrophic cycling accident which left him physically broken and seriously brain injured for the last decade of his life. Not only did I lose my husband twice (first to brain injury, second to death), I lost a decade of my professional life and retirement savings. Worse still, family and friends dropped away leaving me isolated and exhausted. It’s been nearly four years and I’m still struggling to rebuild my life and regain my own health. But my experience has left me desperate not to put one of my daughters through a similar protracted crisis. I know it is impossible to anticipate every exigency, but I’ve taken legal steps (in the form of a Durable Power of Attorney for Health Care here in California ) and made my wishes clear that I want my daughters to let me go without heroic measures. And while I know no one can anticipate the particular decisions a crisis will demand, I do hope there will be more financial, social and emotional support available to them.
I can’t tell you how many times I wished my husband could have told me what he really wanted me to do after his injury, but the man who had been my friend and partner, who had loved and cared for me, had been taken away by a brain injury leaving me to make the impossible choices alone.
Does the author discuss ways we might let our potential future caregivers know our wishes for them? I hope so. I’ll just have to read the book to find out.

[nextinstitute]

How many workdays are lost to care vs how many caredays are lost to work... Brilliant!

[advocacynaccountablity]

Thank you Emily, for pulling attention to this grossly hidden issue. This is absolutely a human issue as much as a feminist issue. Here in Minnesota we celebrate the Paid Family Leave legislation we won last week as a step toward human rights laws that honor lived reality.

[debby]

The hardest thing I’ve ever had to do. I’ve never been so physically, mentally and emotionally exhausted in my life. I’m my mom’s primary caregiver (Alzheimer’s) and have done it for 5+ years. I love her to the moon and back but caregiver burnout is a very real thing. I’m pretty sure that my 85 year old mom will outlive 64 year old me. Unless someone has walked in our shoes, they will never ever understand 💔

[marshatolbert]

I am living this experience right now! It is very difficult, isolating and stressful.

[kathya]

I took care of my mom, my sister.. both with cancer.. my brother also afflicted at the same time. It was a nightmare. The emotional toll is extremely difficult, the financial strain, the upheaval of family / work dynamics. I’m a us citizen in France & got good support but still it was overwhelming. All three of my immediate family died within 3 months. My brother first - I had to tell my mom. Mom mom next, I had to tell my sister.. ..🥺🥺🥺 I had 2 funerals to arrange the 3rd one my distance sister helped. I don’t know how I survived emotionally. My mom died in my arms and I did my best. But I often felt so alone. I was working at the time & I was fortunate to have compassionate support. It’s hard for caregivers to ask for help. I have no regrets despite everything. I could not do things differently. Talking about it helps. Her story is my story!

[nextinstitute]

In Italy, a lot of my male friends are taking care of their sick parents too... It's amazing what they do and sacrifice.

[cherieseeto]

Heart moving interview. Emily Kenway has the most beautiful way of speaking clearly to convey her message. I could listen to her anytime. We can't succumb to compassion fatigue when we are in the midst of caring for a loved one. It is hard work but carers step up and keep going.

[lisaferrara]

I cared for my elderly mother for over a decade. None of my siblings offered to help me. Instead, my brother tried to take all of her money and sell her house under the guise that “he would take care of her.” His true intentions were to immediately put her in a nursing home, leaving me homeless as well. As my mother’s POA, I prevented him from doing what he planned. I followed my mother’s wishes and she passed in her home, but I was ostracized by him and my sister. I carried the burden, and, yes, it affected my physical and mental health.

[alanna]

People that ask 'why not just pay someone to do it?' obviously have no clue about this kind of situation.
I'd be asking them, 'how do I afford to pay someone?'
How do I know I would not be paying someone that will end up abusing my loved one or stealing from my loved one or me?
It's not just that simple to 'pay someone' to do it!

[oppenheim]

There should be a basic annual income for every adult. It is less costly than having to administer social programs, qualifications for money, etc.

[towanda]

Way past time someone addressed this issue. Thank you. It is a crisis that must be addressed. As you say, it impacts us all.

[christianemauro]

This is so important to address. I have had a similar experience and I know so may of my generation are as well. This must be addressed.

[jennywhisconier]

Thank you, Emily -- Yes, it has come for me, and I am giving care. I can't even talk about all the frustrations and bad feelings, without getting emotional, even tho' I know I wouldn't choose a different path for myself and my loved one . . .

[caseroj]

It's not just women who have to provide this sort of care. My Dad was diagnosed with alzheimers and he became threatening toward my mother. I had to buy a house 180 miles away from my parents home over 10 years ago and move me and my mother into the house in order to protect her. My brother stayed behind in the family home to become my father's caregiver while I became my mother's caregiver. My mom has diabetes and stage 4 kidney disease. She has so many doctors and meds that we need a giant wall calendar every year to keep track of all her appointments. She doesn't drive and doesn't speak English so I take her to every appointment with every doctor and serve as her interpreter. She regularly experiences acute conditions that require a visit to the local hospital ER. When that happens it throws my entire life out of kilter as I have to suddenly leave work and run with her to the ER. It's has gotten so bad that I cannot even visit the ER for myself when I experience acute conditions. I need to undergo surgery and it has been terrible trying to coordinate my surgery dates and medical requirements with my mom's own special needs. I have had to make sacrifices in my career and personal life to take care of my elderly mother. My brother has had to do the same with my Dad. As his alzheimer's has steadily progressed and his condition deteriorated my father has required constant supervision which means my brother cannot work. The worst of it all is that the state of Florida controlled by Republican governors whose ideology is that no one should get help from the state unless you are a millionaire or billionaire in which case you should be rewarded with welfare and tax cuts that the rest of us have to finance. No other country in the world except America abandons the poor and those who need help and showers the most wealthy in society with the tax payer funded benefits. That only happens in a society as corrupt as America!

[mikeklein]

Each of us, your mum included, are the only ones who can define our quality of life for ourselves. You have lived that reality and are now living that reality for yourself.