Caregivers need a lot of light in our lives. We often spend too much time inside, behind the curtains, at home, in a hospital or in a care facility. This can lead us to spend too much time in the dark, in our own heads, and not enough time interacting with the bright world outside.

I met a Vietnam veteran who has literally been carrying a suitcase with him every day for the past 45 years. Inside are photos about his war experiences. He needed to talk about them, to air out his mind, and allow someone else to hear his story. He wanted to help others learn from his experience.

Sound familiar? As caregivers, we need to check to see if we picked up some baggage in the dark times of our lives.

Anger, anxiety, and stress are common companions for us. I know the last year of my mother’s life had plenty of these emotions to go around. Allowing our struggles to live in the shadows leaves them in the shadows. The layers of guilt and anger don’t go away until we see them, deal with them, and let them go.

There are therapists, clergy and support groups where we can safely express our fears and frustrations. We shouldn’t be afraid to use them. The simple act of talking to someone else can make a world of difference.

I would not want anyone to wait almost the entirety of their lives to make peace with their experiences. Let’s all open our suitcases and take out the stories we need to tell now. We’ll be able to see the difference between the shadow and the sun, and our steps will be so much lighter.

WellMed Charitable Foundation Executive Director Carol Zernial is a noted gerontologist, radio show host, and Chair of the National Council on Aging. The non-profit WellMed Charitable Foundation focuses on complimentary programs impacting seniors and family caregivers, including weekly telephone learning sessions, evidence-based classes on stress reduction and more. Learn more at or toll-free at 1-866-390-6491.

My mother recently passed away. This is the common ending of so many caregiving journeys. For us, it was six years after the official Alzheimer’s diagnosis. But it could have been cancer, end-stage renal disease, heart failure, pneumonia, or a number of other conditions that prompt people to pick up the mantle of caregiving.

I was standing in line at the busy Starbucks at the airport to go home. I felt on edge with the pushing of caffeine-craving people with their luggage, the overly loud voice of the woman on her cell phone behind me strategizing about the latest office brouhaha, and the incessant questions of the guy in front of me who wanted to know something about every pastry in the case.

And then it all fell away: the noise and the people. Because it wasn’t important. I was ultimately going to get my coffee and make my flight. And I thought about how helpful this ability to let go of unimportant annoyances would be for caregivers every day. Why did I save my hidden superpower until the end?

It now seems that caregiving built layers around me, like an onion or flower bud, that it is time to shed. At the center is me as I really am. Here, too, is my mother as she really was, without the disease. The next layers are the family and friends who have been on the journey with us. We are surrounded by the layer of the illness.

The next layers are the doctors, nurses and professionals who tried to help us along the way. There are the direct care workers from the assisted living facilities and those who came to our home. There are the medications, medical supplies, books and stuff we used along the way.

So now we don’t need these things or many of the people, and we will let them go. We will be forever grateful to the people who gave my mother the same love and care that we wanted to give her every day. And death has finally gotten rid of the illness that surrounded us.

After removing this layer of disease, we are back to just us: the family and friends. At the center is my mom as she always was before she was sick and will always be in my heart. And me – the person I always was and now the person I want to become in the future. Because I am different now, as we all are after this journey: I was a caregiver.

WellMed Charitable Foundation Executive Director Carol Zernial is a noted gerontologist, radio show host, and Chair of the National Council on Aging.  The non-profit WellMed Charitable Foundation focuses on complimentary programs impacting seniors and family caregivers, including weekly telephone learning sessions, evidence-based classes on stress reduction and more. Find out more at or  toll-free at 1-866-390-6491.

Carol-PR-Photo-10-1-11-SMALLERFor the past 30 years, professionals who work with the elderly and with caregivers have been preparing for the aging of the baby boomers, the 74 million people who are now turning 65 at a rate of 10,000 every day. It’s time to go back to that future of aging and see if we are indeed ready. What did we get right over the past 30 years? What do we need to rethink? And what is new that we need to consider?

First, our concern about the lack of retirement savings for upcoming seniors and boomers was well founded. The Insured Retirement Institute says that only 55% of boomers have any dedicated retirement savings besides Social Security. Of these, most have less than $100,000 saved, which averages only $7,000 a year for an average retirement of 20 years. Can most of us get by on only $7,000 a year? The financial status of aging boomers may be the defining issue of this generation, impacting policy, eligibility, and effectively ending the school-work- retirement life cycle. As well-known gerontologist Ken Dychtwald has been saying, older people will want to continue working and many will need to continue working. This shift may go beyond the older generations. As younger people reject the notion of longer work hours and strive for work/life balance, voluntary episodic work could reshape our society.

Equally important is the fact that we still don’t have a comprehensive long-term services and supports system. As an example, five members of my family currently live in residential care facilities at a cost of $32,900/month or $394,800/year. With our combined family resources, we can’t afford this for five people. The 100% private pay or 100% public pay system is unsustainable.

We must address the extremely low wages paid to working caregivers to ensure we have an adequate and capable Care Force for these millions of boomers. They are predicted to be less healthy and more costly to the health care system over the next 14 years than the previous generation (United Health Foundation). Half of all direct care workers rely on Medicaid and food stamps. Their pay is as low as $16,240/year to take care of our families, and their own. Unpaid family caregiving as the backbone of our long-term care system also takes a heavy toll. The average woman who stops working to care for a family member loses $303,000 in wages and benefits over the course of her lifetime.

So what do we need to rethink? Leo Buscaglia, the author and speaker who used to tell us to hug each other often, once said that the words “and they lived happily ever after” are the most tragic words in all of literature. In our American culture, “helping seniors remain independent in their own homes” may be our tragedy. A recent study of 3 million people conducted by Brigham Young University now says that loneliness and isolation are the new smoking, and that social isolation can be a more powerful predictor of heart attack and stroke than high blood pressure or obesity. And, a person who feels lonely is at as high of a risk as someone who actually lives alone without social interaction. Is our push to help people remain isolated behind the walls of our homes causing greater disease, disability, and unhappiness in our older years?

We also need to rethink traditional aging services as provided by the Older Americans Act. Boomers and seniors expect consumer-focused services and choice. The inflexibility of the current system does not serve us well. The middle class also suffers under the current system. People with very low incomes have access to Medicaid and are eligible for services, and people with higher incomes can pay for their own. Familes in the lower middle class are not eligible and can’t afford to pay. They are almost literally a dying breed.

If we look at the new possibilities that exist, technology is the new frontier. Smart phone technology is the most rapidly adopted technology in the history of the world. It may be able to foster interaction and help people to access the services they need from wherever they are. We don’t want to lose in-person interaction, but the ability to access tailored goods, services, social interaction and entertainment in the palm of our hands is a game changer.

We know the future hasn’t been written yet. The doom and gloom scenario that seniors and boomers will drain the resources of the country is only a possibility if nothing changes – and things are already changing. We know the secret: the increase in older people has the potential to be an increase in time, talent and resources that can go to help so many of societies issues. Long life is a gift to be discovered and used to advantage.

We have a short window to plan our glide path to the future of aging and caregiving right now. Or, as Yogi Berra once said,” If you don’t know where you’re going, you’ll end up some place else.”

Carol Zernial is Executive Director of the non-profit WellMed Charitable Foundation. A noted gerontologist, Ms. Zernial also serves as Chair of the National Council on Aging Board of Directors.

Carol-PR-Photo-10-1-11-SMALLERMany of us will rely on the services of a paid caregiver at some point during our caregiving journey. These are individuals hired to come to our homes and provide light housekeeping and personal care services for our loved ones. We might hire them directly or find them through a home health agency. They are certified nursing assistants who work in assisted living facilities and nursing homes. They may provide hospice services to those in the final stages of life.

We entrust these paid direct care workers with the most important people in our lives: our mothers and fathers, husbands and wives, grandmothers and grandfathers, and other family members who are ill, fragile, or have a disability or special needs.

A Huffington Post article stated that despite decades of advocacy by direct care workers themselves, care work is still seen by too many Americans as somehow “less than” other forms of work. A board member from the Direct Care Alliance said, “Direct care work is expected but not respected.”

Almost half of all direct care workers rely on public benefits such as Medicaid and food stamps. And 89% of them are women. According to the Bureau of Labor Statistics, personal care aides are paid as low as $16,240 per year. The lows for home health aides averaged less than $16,410 per year, or $7.89 per hour. For pay that is barely above minimum wage, they are asked to care for their own families as well as ours.

A trade association calls direct care work back breaking and mentally heart-breaking.

We have to start investing in what Caring Across Generations calls our “Care Force.” The Care Force includes unpaid family caregivers like those of us who need Social Security to recognize our quarters of work in the home, taking care of our loved ones. Or tax breaks for the more than $5,000 a year that family caregivers contribute out of our own pockets.

It also includes paid direct care workers who are the working poor. This matters to us and our loved ones, because the true cost of low pay is high turnover, inability to attract people who want to do this labor of love, and a future where there simply won’t be enough family caregivers or paid caregivers for all of us who will need care.

Caregiving in this country matters. The people who need care matter. It is time to put our heads and voices together to change conditions that don’t reflect the importance of this work that for many of us is a sacred task.

Carol Zernial is Executive Director of the non-profit WellMed Charitable Foundation. A noted gerontologist, Ms. Zernial also serves as Chair of the National Council on Aging Board of Directors.