A Patient Advocate's View

Caregiver Support-Advice for Moving the Talk to Action

By Carol Marak

April 06, 2016.

It’s disheartening to know that the Family and Medical Leave Act have not improved much over the years. Although no comprehensive policy or program to support family caregivers exists today, the pace of dialogue and interest has quickened in the past five years to include them in the deliveries of care. Many companies are expanding leave for maternity and paternity leave. NetFlix gives staff a year! However, moving the talk to action for family caregivers needs a shove.

It’s a universal issue, and I remember the days of helping mom and dad from a distance while holding down a full-time job. For me, family caregiving began in 1999, when mom’s health started to fail. At the time, 1,200 miles lay between us but decided to shorten the distance and moved closer.

Even so, my job kept us apart. My efforts to work a solution with the HR department fell on deaf ears. Back then, I thought she was cold-hearted but now know that her hands were tied. Unfortunately, the same grief rests on families today.

Lynn Friss, a senior strategic policy adviser for the AARP Public Policy Institute, says “Despite some recent policy advances at the federal and state levels, the pace of change must accelerate to recognize adequately and explicitly support caregiving families.” In Lynn’s article, she concludes that their requirements demand solutions, or they risk burnout from extended distress. Friss believes that working caregivers could prevent burnout by providing information, better care coordination, support, and training.

Our country must adapt to the complex needs of caregiving families. We must find ways to address and resolve the significant issues before we lose the “family assistance” to ill health caused by exhaustion. Since our country’s long-term services and supports (LTSS) systems are not set up to meet the needs of family caregivers, how do we help them?

We need real world answers and help. Therefore, I asked the Aging Council Members for their guidance. Since they work in the field and deal with families and older adults every day, no one is more suitable for the query,

“What emerging programs and policies do you see changing to include the family caregivers—and what remains a challenge?”

Care Coordination

It is still a major problem for working caregivers to coordinate for a loved one’s needs, often leading to leaving jobs or cutting back on hours, giving up promotions, etc. We need to examine the cost-benefit as employers and society to paying for some assistance and offering various benefits versus losing valuable workers, time, etc. Alex Chamberlain, Easy Living FL.

Financial Concerns

Caregivers lose large chunks of wealth due to opportunity and actual costs of giving care. Companies are extending EAPs to help and modifying benefits to be more inclusive, but this needs to be addressed on a wider level as it not only impacts individuals but our overall economy. Shannon Martin, Aging Wisely.

If enacted, the Social Security Caregiving Act would provide modest retirement compensation to those who have left the workforce or reduced their hours to care for a loved one, thereby reducing the amount they are paying into Social Security. The credit would ensure the caregiver would not be losing the benefits they would receive upon retirement, presenting more flexibility for these caregivers. Evan Farr, Farr Law Firm.

Family Support

One organization to check is ReAct, a coalition of companies that embrace family caregivers in the workplace. They have benchmark reports that provide best practices. Organizations must realize that great customer experience starts with a great employee experience and with 6 of 10 people in the workforce are family caregivers; taking care of them also helps your business. Anthony Cirillo, The Aging Experience.

Family caregivers are exhausted. Because many caregivers have to leave the workforce to care for aging family members, there are no additional monies left to pay for respite care. Caregivers who DO exit the workforce go without funds, friends and in many cases, the ability to find employment in their area of expertise. Shelley Webb, Transitional Caregiver.

In the realm of private insurance we talk of absenteeism and presenteeism (“there, but not there”) since forecasts call for a “caregiving workforce” as the new normal. Private LTCI– with all its attendant benefits– is expected to make a major push into the worksite in the next few years. In Washington, a trio of public policy advocates has called for greater support for family caregivers. Stephen Forman, CLTC, Long Term Care Associates, Inc.

Employer Options and Strategies

Flexible schedules in the workplace are a life saver for both the employer and employee. Not all positions/companies have the ability to make this work, Scot Cheben, Caregiving Answers. A Metlife study found that:

  • 33% of working women decreased work hours
  • 29% passed up a job promotion, training or assignment
  • 22% took a leave of absence
  • 20% switched from full-time to part-time employment
  • 16% quit their jobs

Caryn Isaacs, Get Health Help, offers the following examples of worthy programs and resources for family caregivers:

Under FMLA, children of aging parents may take up to 12 weeks of unpaid leave annually to care for parents who are experiencing health problems. Unfortunately, many individuals do not meet the FMLA requirements, and even if they do, long-term care needs often exceed the allotted 12 weeks. Many people struggle due to the reduced or absent paychecks when taking leave under FMLA.  Ben Mandelbaum, Senior-Planning.

America is waking up to the fact that family caregiving is costly and pain-FULL. A price tag exists for loss of work and increased healthcare costs for caregivers. Link that to the growing population and you have the perfect storm. Employers with EAPs reap “presenteeism”, cost-savings, and show support and value to employees. More can be done on state level to follow the federal FMLA. Change is driven by pocketbook pain: the government’s, the employer, or Insurance. Nancy Ruffner, NavigateNC.

About Carol Marak 

Carol Marak is a senior and family caregiver advocate. She is the editor for and writes for many online publications offering information on current aging trends and help. She helped publish America has a Major Misconception on Aging, a report to help consumers plan for long-term care.

Carol Marak’s background includes caregiving for her parents and has first-hand experience in helping her father who lived with Alzheimer’s disease. She understands the dilemma family members encounter when caring for a relative and working a full-time job.

Ms. Marak has published more than 200 professional articles for health care websites, blogs and newsletters. She became a full-time freelancer in 2006 and has been interviewed by reporters.

Though senior care is her area of expertise and greatest passion, Carol has written and edited branded content, articles, company profiles and product brochures. Carol has a BS in Behavioral Sciences and Criminology from Sam Houston State University in Texas.

April 7, 2016 Posted by | Uncategorized | Leave a comment

How to get families to talk about estate planning issues

  • 162f4b4f0a8e1d7bf61355795d29a751Carol Marak, Aging Advocate, Editor at, and Columnist. She earned a B.S. in Social Services and a Certificate in the Fundamentals of Gerontology from the University of California Davis, School of Gerontology. Carol is an active member of the American Society on Aging. She publishes aging-related news in the Huffington Post,, Lifehack, ASAging, Love to Know, BlogHer, and SheKnows,, and

    ​Sharing my personal experience and challenges about my family members’ estates and advance directives is the most efficient way to start the conversation. It illustrates that it’s a real issue. I try to de-stigmatize the topic by taking a matter-of-fact approach and providing practical tips, as I did in my book “Juggling Life, Work, and Caregiving. Amy Goyer, Amy Goyer Consultant.

  • Ask: if they’ve had to make life altering decisions for one who is unable to make decisions himself? Who would so this for you; would he know how to based on your expressed wishes? It’s the greatest love letter written to one’s family. Don’t require your family to handle your affairs without any guidance. Let them know how to conclude the legacy story of your life. Rhonda Caudell, Endless Legacy.
  • Use stories: When folks don’t know how to begin sharing a situation on TV or what happened to a neighbor/co-worker, that exposes vulnerability. It sets up the question that enables the conversation. Everyone loves a good plight-story: how others did it, or what they encountered. Tragedy or Triumph, we weigh them. Stories both teach and compel us to turn inward toward our planning. Nancy Ruffner, Navigate NC.

Offer education

  • Most consumers, don’t understand “The Modern Estate Plan” as the threshold for estate taxes is more than $10M for a couple. We need to explain better “property or estate erosion” due to potential healthcare costs which have no minimum threshold. Effectively, this stealth estate tax needs to be addressed, and most advisors fail to help clients understand the impact of healthcare in retirement and LTC planning. Mike Padawer, INERTIA Advisor Services.
  • It’s important to educate clients about all the consequences if they neglect having an estate plan. A primary goal is to avoid probate court. Estate planning enables the client to consider who is most appropriate to handle medical and financial decisions should they become incapacitated. We also provide advice on techniques that can be used to benefit a client’s intended beneficiaries. Ron Webb, Peck Ritchey, LLC.
  • Use TV shows, movies, articles in the paper and experiences of friends and relations to bring up the subject. Play the “what if” game–what if you were hit by a bus and broke your right arm and couldn’t write a check–how would your bills be paid? What if you were in a coma–what would you want me to do to care for you? Let’s all fill out our forms together. Donna Schempp, Family Caregiver Alliance.
  • Let’s face it. Money and death are not the easiest discussions and deserves the greatest level of sensitivity. Depending upon the person, it may be simpler to provide a few books or resources to review. Other times, you can refer them to a specialist or send them documents to fill out directly. Sites like have updated materials to make it easier. Michelle Jeong at LifeAssist.


Use assessments and tools

  • I use an assessment form that asks multiple choice questions. The answers tell me if a person is prepared, or needs assistance to make them or needs help from another person to make decisions for them. I deliver support via personal interviews, in family group settings, and in larger audiences. Caryn Isaacs,
  • I discuss EOL issues through The Conversation Project’s free tools. ( TCP’s Starter Kit is an easy, painless way to open the door about EOL. It is the step before setting up advance directives and thinking about medical interventions and talking with a lawyer. The approach makes you think about what is important to you at the end of life in broad terms. Laurie Miller, AppleCareandCompanion.
  • It is part of our care management assessment process and ongoing work with every client. Community education is also important to create awareness and conversation. So far this year, our owner Elder Law Attorney Linda Chamberlain has talked about “Creating an Exit Strategy” and “The Legal Docs You Must Have” in monthly workshops. Shannon Martin, Aging Wisely

April 6, 2016 Posted by | Uncategorized | Leave a comment

Preparing for the unthinkable.

Carol Marak

by Carol Marak

There is a geriatric population explosion in the United States, and policies for improving care and quality of life for the elderly have come to the forefront. Last year, Medicare modified payments to cover counseling sessions for providers and patients when discussing end-of-life issues. The topic is a sensitive one; having these discussions may lower health care spending. Since 25 percent of Medicare payments apply to the last year of life, these conversations could limit treatment. According to a 2010 Health Services Research study, 63 percent of beneficiaries receive hospital care in the last few months of life.

Public and private hospitals lack the services needed to educate patients regarding palliative care. The new Medicare ruling allows voluntary advance care planning during patients’ annual checkups. The provision aims to forego aggressive life-sustaining treatment and help beneficiaries deal with complex decisions when approaching death.

The National Institutes of Health notes that doctors are trained to maintain health and fight illness and, thus, receive insufficient guidance on how to communicate with dying patients. And since our society is death-averse, it is not surprising that physicians find it difficult to engage in “terminal state” consultations. For them, death is a medical failure. However, advocates of Medicare’s ruling recognize that good communication can dispel fears, minimize pain and suffering, and enable patients and their families to experience a peaceful death.

A few members of the Aging Council offer advice to initiate end-of-life conversations:

Scot Cheben,, encourages doctors and patients to have ongoing group conversations that include a trained gerontologist or social worker.

Kathy Birkett,, sees doctors ideally positioned to have an end-of-life dialogue. Doctors don’t have to know everything but need to get the process started and then help patients complete the journey.

Caryn Isaacs,, remembers a client who refused to change his “destructive” habits until he began dialysis. The patient thought one or two treatments would be the cure. The patient soon learned from his doctor that if he wanted to live longer, he would need to make substantial lifestyle changes. It led to advance directive discussions.

Evan Farr,, says that because physicians fight illness, they need practical educational tools to address fundamental issues concerning death and dying.

Connie Chow,, thinks Medicare support is a step in the right direction. An excellent book is Being Mortal: Medicine and What Matters in the End. Written by Atul Gawande, a surgeon and public health researcher, it illustrates doctors’ reluctance to stop treatment even in terminal cases and their avoidance of discussions about likely outcomes.


Carol Marak is the editor at She earned a Certificate in the Fundamentals of Gerontology from the University of California, Davis. Contact Carol at

April 4, 2016 Posted by | Uncategorized | Leave a comment