By Carol Zernial
WellMed Charitable Foundation Executive Director

Have you ever considered what it would be like to be a Vulcan? Yes, I am talking about Mr. Spock’s planet of origin from the Star Trek series. I’ve been watching the entire The Big Bang series with my son the past few months, and they talk about Mr. Spock a lot. They even changed the game of Rock, Paper, Scissors to Rock, Paper, Scissors, Lizard, Spock. Don’t ask.

In any case, it has occurred to me that being a green-blooded Vulcan would absolutely benefit caregiving situations.

Logic: Vulcans don’t have human emotions that cloud clear-thinking and reason. It must be nice to be able to stand back, and make decisions that aren’t weighted with emotional baggage. Just the facts ma’am and I don’t care that you never loved me. For a Vulcan, anything less than the best decisions wouldn’t be logical.

No human emotions: The Vulcans can be a bit snooty on this, because emotions are sign of weakness and being less evolved. As a Vulcan, we caregivers wouldn’t have to carry around guilt, anger, fear, stress, depression and grief. What a relief. But we all know that love, laughter, and tenderness that are emotions that put us on the plus side of the caregiving experience. Perhaps we should agree to be like Mr. Spock on this one: half Vulcan and half human. Caregivers would have the best of both worlds if we only focused on the positive.

Vulcan nerve pinch (also known as the Vulcan death grip): I want this ability! It’s not really a death grip – it just puts people to sleep. If other relatives with all of their “helpful” advice or professionals who think I ask too many questions are giving me a hard time, I’d just pinch their neck, put them to sleep for a while, and walk over them to get some ice cream. Sweet. I’d also use it for those nights my loved one is up and about in the wee hours. A good night’s sleep is a thing of beauty.

Vulcan Mind Meld: Another must-have caregiver talent. Vulcans can put their hands on the face of someone else, say “my mind to your mind,” and they can read the other’s person’s thoughts. If you didn’t understand the doctor’s instructions, mind meld. If your spouse is still a complete mystery to you, mind meld. If your loved one has Alzheimer’s and you don’t know what they are saying, mind meld – but with extreme caution. (Many of us know what happened to Captain Picard and Spock’s dad who had Alzheimer’s.)

Super Strength: Vulcans are as strong as four men or ten men or something like that. Super strength is not only terrific for taking out the garbage, sweeping under automobiles, and getting Uncle Joe in the bathtub, we would still have energy left at the end of the day.

Vulcans work for the higher good of the many, not just the few or the one. They’re excellent with science and medicine, and a bonus on any landing party. Things just seem to be less complicated without all those pesky emotions. And they make loyal friends.

So the next time you’re feeling overwhelmed being a caregiver, put on your Mr. Spock pointy ears and Starfleet shirt. Think clearly and recognize that negative emotions aren’t helping. Meld your mind to your loved one and see through his/her eyes. Put or visualize yourself putting a nerve pinch on those who are taking your energy and aren’t part of the solution. Be strong – and live long and prosper.

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

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!