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.

By Dr. Jamie Huysman

A dedicated caregiver’s heart is one of gold, and many should be awarded purple hearts!

Caregivers fight the good fight every day. There is no question that caregivers are constantly putting their hearts (and sometimes souls) on the line.

So, it’s really no coincidence that February is Heart Health Awareness Month. It is, after all, that time of year when hearts are everywhere, so it makes sense to use this time to remind people of the importance of keeping a healthy heart.

However, we are a stubborn species. We seem to put more effort into seeing to it that our cars run well than we do about maintaining a healthy heart!

Heart disease is known to be a leading cause of death, claiming a life every 42 seconds, and leaving a trail of broken hearts in its wake. Stress, poor nutrition, uncontrolled high blood pressure, sedentary lifestyle, diabetes, and genetic predisposition are all common means to a preventable end for caregivers as well as those they care for.

The American Heart Association website

Tips to maintaining a healthy heart.

“True healthcare reform starts in your kitchen, not in Washington” — ~Anonymous

Jamie Huysman, PsyD, LCSW is Vice President of Provider Relations and Government Affairs at WellMed Medical Management, a UnitedHealth company. He has almost 30 years of medical and behavioral health experience in nonprofit and for profit corporate leadership roles in both hospital and managed care environments.

He co-founded the Leeza Gibbons Memory Foundation that created a new level of care for caregivers around the country and received Florida’s Social Worker of the Year Award for that work in 2008. Since 1992, his program TV Aftercare TM has provided millions of dollars worth of follow-up care for talk, court and reality guests.

Dr. Jamie co-authored the acclaimed Take Your Oxygen First: Protecting Your Health & Happiness While Caring for a Loved One with Memory Loss and was featured in The 100 Mile Walk: A Father and Son on a Quest to Find the Essence of Leadership, Voices of Caregiving and Voices of Alcoholism. Dr. Huysman writes for Caregiver SOS, Florida MD and Today’s Caregiver magazines and blogs on PsychologyToday.com.

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 www.CaregiverSOS.org or toll-free at 1-866-390-6491.