Caregiver Nation: Snapshot Of 43 Million Americans Who Give Unpaid Care



By Marina Renton
CommonHealth intern

A high-stress job that requires a full-time commitment for no pay.

What kind of work fits that description? The answer should resonate with more than 43 million Americans: unpaid family caregiving.

As the population ages and more people need care, the ratio of available family caregivers to care recipients is declining, and efforts to support family caregivers are beginning to make headway in the political sphere.

Among those who need that support most: “higher-hour” caregivers, who spend more than 21 hours a week on caregiving, according to “Caregiving in the U.S. 2015,” a report released this summer by the National Alliance for Caregiving and the AARP Public Policy Institute.

Ask Massachusetts resident Diane Gwynne, 56. After her mother’s sudden death this past December, Gwynne found herself trying to balance her career and household responsibilities with caring for her 92-year-old father, who has dementia.

“I was so overwhelmed,” Gwynne said of when she first started caring for her father. “It was so sudden. I didn’t even know where to turn.”

Last year, Gwynne’s mother had an intuition that the Christmas of 2014 would be the family’s last. Gwynne’s mother was in her 80s and her father was seven years older, in his 90s. Both were feeling the effects of age.

“My mother said, ‘I want to put all the decorations up, because I think this is going to be our last year all together,’ ” Gwynne recalls. Her mother, it turned out, was unknowingly predicting her own death: She passed away just before the New Year.

Suddenly, her bereaved children found themselves managing the estate, taking their father to medical appointments, and making arrangements for his day-to-day care.

Caregivers By The Numbers

Caregiving in the U.S. 2015,” a report that comes out every few years and aims to profile the nation’s family caregivers, looks at the demographics of family caregivers, along with the emotional, physical and financial challenges they face.

Based on the results of online interviews with 1,248 adult caregivers who provide care to adults, the report offers a quantitative snapshot of the country’s caregivers. Among its findings:

• Approximately 43.5 million adults in the country have provided some form of unpaid care to an adult or child with special needs in the past year.

• About 39.8 million Americans have cared for an adult (over 18 years old), and 34.2 million an adult over 50, in the past year. In other words, about 18 percent of U.S. adults have shouldered some unpaid caregiving responsibilities in the past year.

• The average caregiver is a 49-year-old woman caring for a relative. (Eighty-five percent of caregivers look after a relative, 49 percent a parent or in-law.)

• Less than a third of unpaid caregivers retain some kind of paid help.

While she had helped out both her parents in recent years, it wasn’t until her mother’s death that Gwynne and her sister became the primary caregivers for their father.

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Giving Family Caregivers A Break: National ‘Respite’ Gathering In Boston

A Worcester family helped by respite care for Lily, far left, who has Rett's syndrome. Shown: Lily, Leslie, Ginger, Pat and Brady, the dog. (Courtesy)

The Courtney family of Worcester were helped by respite care for Lily, far left, who has Rett syndrome. Shown: Lily, Leslie, Ginger, Pat and Brady, the dog. (Courtesy)

This week, the only national conference that focuses on “respite” for family caregivers comes to Boston for the first time. You may never have heard of “respite” as a social-service concept, but it makes instant sense once explained: Non-stop caregivers need a break sometimes. A respite from their 24/7 responsibilities. It’s not just the humane thing to do; studies suggest it also improves care. Below, two respite experts share one family’s story and its context.

By Theresa Driscoll and Elenore Parker
Guest contributors

Leslie and Pat Courtney were typically busy parents of six-year-old Ginger and 18-month-old Lily when they noticed that Lily was losing some of the words she knew. Over the course of a few days, Lily lost the ability to sit up or stand, and was having trouble swallowing.

The Worcester family spent the next two months at Boston Children’s Hospital searching for answers to Lily’s sudden and startling decline. Lily could no longer eat or drink and needed a feeding tube for nourishment.

Doctors finally diagnosed Lily with Rett Syndrome, a rare genetic disorder that affects brain development, occurring almost exclusively in girls. Although Rett Syndrome is rare, the statistics still frighten, with the syndrome occurring once in every 10,000 births. In Massachusetts alone, there are approximately 500 children with Rett’s.

Over the next two years Lily’s abilities continued to decline. She hardly slept, butted her head, and screamed continually.

When Lily was three, Leslie realized that she and her husband couldn’t keep up this round-the-clock care on their own. When she applied for services through the Massachusetts Department of Developmental Services, she discovered the Central Mass. Respite Project and realized that respite — or short-term, temporary relief provided to family caregivers — could give her family support that would help them regain some much-needed balance in their lives.

Without respite, Leslie would have had a “complete melt-down,” she says.

“Respite allows the family to be a family,” she says. “Getting a mental and physical break is vital to continue caring for my daughter in my home. It also gives me the opportunity to do things with my 15-year-old daughter, Ginger, who is very physically active. It gives me the chance to actually spend time with my husband – and friends, occasionally.”

In the U.S., family caregivers like Leslie provide most of the long-term care and support. Continue reading

Forgive. And Other Caregiving Lessons From My Mother’s Dementia

elderly hands
Here’s a striking statistic: Four in 10 American adults care for an ailing or elderly family member, according to a study released this week by the Pew Research Center’s Internet and American Life project. The numbers have been rising as the population ages and more people live with chronic illnesses, and that rise is expected to continue. Here, non-profit CEO Tiziana Dearing shares her own family’s newly learned caregiving lessons.

By Tiziana Dearing
Guest contributor

My mother has dementia and is degenerating. I struggle to find the words to describe how hard that is. Then again, if you have a loved one suffering severe dementia, I don’t need to tell you what it’s like. And if you don’t, I don’t think I could.

Last weekend, my sisters and I convened at my parents’ home to discuss how to support Mom and Dad through this difficult transition. We shared our feelings, our concerns, and the things we have learned so far – both from supporting Mom and through advice from close friends and colleagues who have had similar experiences.

On the trip home, I realized that if we found all these lessons and advice useful, other people might, too. So for those of you struggling, here’s what I would share with you so far.

First, I am so sorry that you and your loved one find yourselves here. Not every moment is bad, though. Find the moments that give you joy and share them. Out loud. You’ll get to live them twice that way and they will help sustain you.

If caring for a loved one with dementia were easy, there wouldn’t be an entire industry built around it.

Second, not all dementia is the same. For example, frontotemporal dementia, the type my mother has, can cause personality change that is not typical in Alzheimer’s disease. Make sure you know what form of dementia your loved one has, and learn what it really will mean for him or her.

Those directly involved in providing care for someone probably have this information, but maybe not. And if you are that brother, sister or in-law who is only partially involved, I am especially talking to you. It can be hard to face the details, especially things like symptoms to anticipate and impact on life expectancy. Nevertheless, you need – and want – to know. As the disease progresses, you can’t imagine how helpful it is to know what’s “normal” for your loved one and what truly is unexpected or might be a symptom of something else.

Third, you can ask for a family meeting. Continue reading

Life Of Riley: How Do They Do It? Coping Lessons From The Masters

I know this will embarrass them, but I regard Kristen Davis and Marc Cerabona much as I see marathoners and professional musicians. They take something that many of us do — parenting — and elevate it to a whole different level. Watch Jesse Costa’s beautiful video above to see them in action.

This is the final — for now — installment in WBUR’s multi-media series, “The Life of Riley: A Rare Girl, A Rare Disease.” Riley, Kristen and Marc’s 9-year-old daughter, has CLOVES Syndrome, which makes “lumps and bumps” grow on and inside her body — from benign but big tumors to potentially life-threatening blood vessel malformations. We’ve explored the joys and difficulties of Riley’s life; the science behind her diagnosis; and the experimental drug that may offer an alternative to repeated risky surgeries. The full series will live on here, and be occasionally updated in the coming months.  

The American Academy of Pediatrics estimates that 15% of American children — about 11 million in all — have “special health care needs.” Special needs tend to demand special caregivers.  Today, we look at the virtuoso parenting that has inspired such admiration in Riley’s doctors that they hope the family can be studied in order to share their resilience lessons with others.

How do they do it? I pestered Kristen and Marc with this question in a dozen different forms. How do they bear the fear and anxiety? How do they suffer the sleep deprivation of getting up at night to help Riley with her breathing machine or her blood sugar? How do they divide the unforgiving labor? How do they keep a family — endlessly demanding even under ideal circumstances — afloat and even frequently laughing through one medical crisis after another?

I asked as a parenting wimp who freaks out at every fever and drags through the day if woken even once at night. I sat at their feet, grateful for their candor, and came away with a dozen lessons. Our conversation, edited and distilled.

1. Accept your lack of control

This has been the hardest part of parenting for me. I was never an anxious person, largely because I figured that whatever happened to me, I’d somehow handle it emotionally. But that’s no consolation when the wellbeing of my child is at stake. It’s not about me. I just want the kid to be okay. What matters most to me in the world is out of my control. How, how, how, I asked Kristen, do you handle the perpetual medical limbo in which you’ve lived?

Kristen: That’s been a whole process, because my natural place to go is to be very organized and type A. So that’s been a whole relearning process for me about how not to be that way and just kind of go with the flow.

‘We acknowledge that it’s hard. We acknowledge that it’s unfair. And then we also talk about what’s good still.’ 

I think I’m way better than I used to be at that, but it’s really, really hard. If it were just me, it would be easier, but there are multiple people who are impacted by the limbo. So it’s a struggle — a struggle not to know what’s going to happen.

I think I’ve become much better able to identify what I can control and what I can’t, and when I just have to kind of see what happens. I don’t feel like that’s defeatist or anything. I feel like that just makes sense.

So how do you cope with the fact that something that you can’t control means everything to you?

I don’t have an answer for that. We’re living it.

Do you get used to the drama and fear, or does it get worse? Continue reading

‘I Try To Share All Of My Heart’: Hospice Staffer Wins Major Prize

Hospice worker and Schwartz Center prizewinner Vilma Barrios with a patient

At its huge annual dinner in Boston last night, the non-profit Schwartz Center for Compassionate Healthcare awarded this year’s top caregiving prize to Vilma Barrios — the first hospice worker and first nursing assistant to receive the $5,000 honor.

Her moving speech is below, as provided by the Schwartz Center. What struck me most is that Vilma, an immigrant from Guatemala, sees her work with dying patients as “very simple” — “I try to share all of my heart with my patients.” But I can imagine few things more complex than opening up to a patient who is guaranteed to die soon. I love the thought of a great banquet hall of 2,000 people all bowing before the power of a heart big and strong enough to do that.

First, though, also from the Center, here’s a letter from the daughter of one of Vilma’s patients, beautifully illustrating the depth of gratitude that many of us feel for special caregivers:

“Our family has never met anyone quite like Vilma. Late in 2007, when she came on the scene, my Dad had already gone through several caregivers. To say that my Dad had a strong personality would be putting it mildly. He had always been one of those no nonsense kind of guys, and even more so as he neared the end of his life when his brain was a bit short-circuited by the drugs he received to cope with the pain.

Vilma had that magic touch with Dad. He would even let her take care of his personal hygiene in the way no one had been allowed to. She earned that right through her patience and her wonderful persistent humor. We all fell in love with Vilma, and she became another sister in our family. Vilma would often come to see Dad on her off hours, just to check on him, even though she knew he had other caregivers there. Even when he ranted at her or complained or yelled, Vilma was patient and full of love and good humor and the fullest measure of compassion. She wanted to be there at the end, and she cried with us as Dad took his last breath. She rode with us to the memorial service and to the cemetery. She was his friend in the truest sense and remains a beloved member of our family.”

And now for Vilma’s speech: Continue reading