Family caregiving is unpaid care performed by family members and friends. It represents 90% of the long-term care in this country. In the United States, 18% of the population — or 43 million adults — care for an adult or child. Caregiving has been a mainstream part of life, but it is just now gaining visibility among health care professionals and elected officials.

In October 2016, Lucy Barylak and Nancy Guberman released Beyond Recognition – Caregiving & Human Rights in Canada: A Policy Brief, raising questions about treatment of family caregivers in Canada compared to the Universal Declaration of Human rights, passed by the United Nations in 1948.

Caregiver rights are not the same thing as human rights. The Caregiver Bill of Rights is an important first step in recognizing that caregivers have individual needs. It is time that we in the United States ask if the higher standard of basic human rights is being upheld for family caregivers.

Key human rights documents in the United States include:

  • Declaration of Independence
  • Constitution of the United States
  • The Bill of Rights
  • Thirteenth, Fourteenth, and Fifteenth Amendments to the US Constitution
  • Nineteenth Amendment to the Constitution
  • Universal Declaration of Human Rights

Just as life, liberty and the pursuit of happiness are guaranteed in our founding documents, the countries of the world under the U.N. declared that everyone has the right to life, liberty and security of person.

Article 22 of the Declaration of Human Rights states everyone has the right to work, to free choice of employment, to just and favorable conditions of work and to protection against unemployment. Do U.S. family caregivers really enjoy these rights today? Almost 40% of caregivers quit their jobs to provide care, or due to lack of job flexibility. Holding a job becomes difficult when caregiving stretches five to ten years, and becomes more demanding.

Article 24 states that everyone has the right to rest and leisure, yet 60% of family caregivers of adults are working full or part-time, and have to provide up to 62 hours of caregiving each week.

Article 25 states that everyone has the right to a standard of living adequate for the health and well-being of himself and his family . . . or other lack of livelihood in circumstances beyond his control. AARP reports nearly  70% of family caregivers use their own money to care for loved ones. Many feel financially strained. Caregivers can spend almost half their income on expenses related to care of their loved one. MetLife estimates a caregiver who leaves the work force loses an average of $303,800 in wages and retirement.

Today, the primary mechanism for the protection of family caregivers is the Family Medical Leave Act. It provides up to 12 weeks of unpaid leave for the care of immediate family members, but 88% of workers aren’t covered under the law, and working caregivers can’t afford time off with no pay.

Tax credits to offset long-term care expenses proposed as part of the Act fall short. The credit of up to $3,000 is less than the average of $5,000 a caregiver spends, and it requires some sort of income.

If we dig into the root cause of the human rights issues related to caregiving, we find that Americans lack universal health care coverage. Because many Americans have to wait for coverage until age 65 under Medicare, most adults reach old age in poorer health than necessary. We also lack a comprehensive system of long-term services and supports. Currently, our system is basically 100% private pay or 100% public pay. Individuals are required to spend down to poverty, often pulling the caregiving family down with it.

For the first time in history, we have an aging boom combined with a longevity boom. Unfortunately, age is the single biggest risk factor for a myriad of chronic diseases, including Alzheimer’s disease. The 5.5 million people with that disease today will ultimately grow to 16 million by 2050. There is no cure or effective treatment for Alzheimer’s. This disease alone could overwhelm the fragile system of family caregiving. At a time when more caregivers than ever will be needed, fewer will be available due to the long-term impact of lower birth rates in the United States.

As we move ahead, it is important to reframe caregiving in the U.S. as a human rights issue. We must evaluate if proposed policies for health and human services go far enough to protect the right to work, right to leisure and right to a standard of living. Most Americans are proud to have a role in returning the care that parents once provided to them. However, caregivers should not be expected to jeopardize their health, the welfare of their families, or their own solvency in old age.

Carol Zernial is executive director of the non-profit WellMed Charitable Foundation, which offers complimentary programs impacting seniors and family caregivers, including weekly telephone learning sessions, evidence-based classes on stress reduction and more. Learn more at www.CaregiverSOS.org or toll-free at 1-866-390-6491.

By Dr, Jamie Huysman
LCSW, CFT

Recently, the National Institute The National Institute for the Clinical Application of Behavioral Medicine (NICABM) reported that the most diagnosed behavioral health issue is anxiety.

Family caregivers surely know all about anxiety. For many it began with a loved one’s diagnosis or the reality that an aging parent can no longer live alone and care for themselves. Caregivers experience anxiety due to changes occurring at a rate that’s difficult to plan for and keep up with which can virtually overwhelm the most even-tempered among us.

The creation of “A Happy Place” provides a respite from tension and turmoil. It’s a place that is yours alone, where you can feel safe and happy. And you can stay for as long as you want to. A happy place can be a memory, an emotion evoked by an image, or a place and time you make up all on your own. Happiness, after all is totally subjective.

I am reminded of a story that illustrates what I’m talking about. It’s called “A Story of Peace” and I’d like to share it with you:

Many years ago, there was a good King who offered a prize to the artist who could paint the best picture of peace. Many artists tried. When the King finished viewing all the pictures there were two he really liked and he had to choose between them. 

One picture was of a calm lake. The lake was a perfect mirror for peaceful towering mountains were all around it. Overhead was a blue sky with fluffy white clouds. All who saw this picture thought that it was a perfect picture of peace. 

The other picture had mountains too. But these were rugged and bare. Above was an angry sky from which rain fell, in which lightening played. Down the side of the mountain tumbled a foaming waterfall. This did not look peaceful at all. 

But, when the King looked closely, he saw behind the waterfall a tiny bush growing in a crack in the rock. In the bush a mother bird had built her nest. There, in the middle of the rush of angry water, sat the mother bird on her nest … in perfect peace. 

The King chose the second picture and rewarded the artist with the prize. 

He declared his choice this way: “Because,” explained the King, “peace does not mean to be in a place where there is no noise, trouble, or difficult work. Peace means to be surrounded by all those things and still be calm in your heart. That is the real meaning of peace.”

Here’s to your peace and happiness … Take your oxygen first!

By Carol Zernial
WellMed Charitable Foundation Executive Director

Caring for a family member or friend is an act of love and giving back. But the cost to the family caregiver, the person providing the care, can be high. In October 2016, Lucy Barylak and Nancy Guberman raised questions about the human rights of caregivers in Canada compared to the Universal Declaration of Human rights, passed by the United Nations in 1948.

At the 2017 Aging in America Conference in Chicago, the WellMed Charitable Foundation raised this issue for caregivers in the United States joined by our colleagues, Lucy Barylak from Montreal, and Dr. Lyda Arrevelo-Flechas from the University of Texas Health Science Center at San Antonio.

Caregiver rights, which tend to focus on giving ourselves permission to take care of ourselves, are not the same thing as human rights. What are the human rights not guaranteed to family caregivers?

» The right to work

» The right to rest and leisure

» The right to an adequate standard of living for the caregiver and her family

Holding down a job becomes difficult when caregiving stretches five to ten years, and becomes increasingly demanding. Today, the primary mechanism for the protection of working caregivers is the Family Medical Leave Act. It provides up to 12 weeks of unpaid leave for the care of immediate family members, but 88% of workers aren’t covered under the law. Working caregivers can’t afford time off with no pay.

Due to lack of job flexibility, almost 40% of caregivers quit their jobs to provide care.

Sixty percent of family caregivers who are working full or part-time provide up to 62 hours of caregiving each week. Not much leisure time is left.

Caregivers can spend almost half their income on expenses related to care of their loved one. AARP reports nearly 70% of family caregivers use their own money to care for loved ones, and many feel financially strained. MetLife estimates a caregiver who leaves the work force loses an average of $303,800 in wages and retirement.

What are some of the root causes that drive up the need for family caregiving?

Americans lack universal health care coverage, meaning that not everyone in the United States is guaranteed access to basic medical care. Because so many of us have to wait for coverage under Medicare at age 65, we reach old age in poorer health than necessary.

We also lack a comprehensive system of long-term services and supports. Currently, our system is basically 100% private pay or 100% public pay. Individuals are required to spend down to poverty, often pulling the caregiving family down with it.

For the first time in history, we have an aging boom combined with a longevity boom.

Unfortunately, age is the single biggest risk factor for a myriad of chronic diseases, including Alzheimer’s disease. The 5.5 million people with Alzheimer’s today will ultimately grow to 16 million by 2050. This means that someone will be diagnosed with Alzheimer’s every 66 seconds. Because there is no cure or effective treatment for Alzheimer’s, this disease alone could overwhelm the fragile system of family caregiving.

As we move ahead, it is important to reframe caregiving in the U.S. as a human rights issue. We must evaluate if proposed policies for health and human services go far enough to protect the right to work, right to leisure and right to a standard of living.

Most Americans are proud to have a role in returning the care that parents once provided to them. However, caregivers should not be expected to jeopardize their health, the welfare of their families, or their own financial solvency in old age.

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.

By Dr. Jamie Huysman
LCSW, CFT

1. Take your oxygen first!
Join a support group for caregivers and make time to engage in other activities to balance your caregiving duties with your personal body, mind and spiritual needs. It’s important for you to have a place to vent and deal with your feelings. Above all, don’t forget that you are human.

2. Ask questions and get answers.
Learn as much as you can about your caree’s primary disease and underlying conditions. In the long run, your loved one’s medical team will appreciate the fact that you are informed and will be more willing to share information with you.

3. Be the go-to contact (or support the one who is).
If you are in the position of being the primary caregiver, make yourself known as the go-to person for your caree’s medical team to confer with regarding your loved one. Having one family member as the primary contact enables you to be an effective liaison between your family and your loved one’s medical team. If possible, set up regular meetings or conference calls with a social worker or geriatric care manager for other family members to voice their concerns.

4. Get the training you need.
Should there be necessary medical procedures you are expected to perform with which you are not familiar or confident in doing, it is your right to be trained in how to do them. Don’t be shy about asking for help — ever. As the backbone of long-term care in the U.S., the ACA has a provision for this.

5. Communicate with your loved one.
Spending quality time with someone who is ill is a not-so-random act of kindness. It is the part of effective caregiving that has the most impact on your caree’s quality of life (and your serenity). Most of us don’t like not being able to do things for ourselves. Having to depend on others for basic necessities can make some people downright ornery and difficult to deal with. You can assist in making your loved one more accepting of their situation by treating them with kindness and respect, especially when they are working your last nerve! Let them know they are not alone and encourage them all along the way.

6. Ask for help when you need it.
Rely on your village. Just as your loved one is not alone, neither are you. You are not an island. Do not isolate. Use all available resources to assist you. Don’t have a village? Well now you get to create one.

7. Live your life!
Your life is not over when you become a caregiver; it’s just different. Giving care to a sick, frail or disabled loved one is not your only life’s work. It might be what you presently do, but it is not the be all and end all of who you are. Your life is what you make it; choose wisely!

By Carol Zernial
WellMed Charitable Foundation Executive Director

I have a new thing that makes me happy: Zumba at the local YMCA. I go twice a week. I look forward to it, and I’m sad when I have to miss it. It puts a smile on my face. That’s something I really needed during a difficult time.

What’s funny is that my friend has been inviting me to Zumba class with her for the past few years, and I didn’t want to go. I had other things at the time. Or I didn’t want to add anything new. I was sure I wouldn’t like it. So it has been a complete surprise to me that I enjoy it so much.

The reason I finally decided to go was that I wanted to spend more time with my friend, and she was at Zumba. So I went. But I found out that good things give many times over. Not only do I get to spend more time with my friend doing something we both enjoy, I also have met some lovely new women in the class. I’ve lost weight. I have better cardio endurance. I excited about the new music and artists that I have discovered through the class. I have some new dance moves.

I like the comradery of the class. These are women who are both professionals and stay-at-home moms. They are breast cancer survivors. They have recently lost a parent or are still caregivers. They are volunteering to raise scholarship money for the YMCA. Some, like me, are trying something new, too. We wish each other happy birthday, and celebrate each other’s achievements. We talk about community. It feels much more supportive than my old traditional gym, so I cancelled my gym membership. I guess I can add saving money to the list, too.

I think about all of the other caregivers while I’m dancing away at Zumba, wishing that everyone could have something that brings them joy at a time when they need it. I’m wondering how many of us have been turning down offers that could lead us to our next new thing.

A thing that brings us joy can be so small that we really do have time in our schedules and room in our lives regardless of where we are on the caregiving journey. It could be as simple as a new bright-colored flower in the garden that we nurture as it blooms. It could be a cat that purrs on our lap, or a dog that loves us unconditionally and does silly things. It could be a new book that we steal away to read one chapter or even a few pages at a time. It could be an online series available anytime. It could be a brief phone call that keeps us in touch with a person who puts a smile on our face, connects us to the outside world, and helps us to feel like we are still visible.

There are things, old and new, worth finding that will give back to us in ways we didn’t expect — but we have to say “yes” when the opportunity comes along.