People ask me why I started a foundation that is so specific in scope: To provide support for caregivers of palliative care patients being treated for pain. The answer is very simple: It’s what I know, what I experienced and what I lived. I wanted to be able to give caregivers one place to go to find some useful information about palliative care and pain management but more importantly, to give guidelines and tips that caregivers could use regarding their daily caregiving.

When I started doing research for the foundation’s website, I found many organizations on the internet with sites that devoted sections of their content to caregiving. These sites span a spectrum of diseases and illnesses from cancer to Ehlers-Danlos Syndrome. Some focus on caring for the elderly. Many are committed to research for finding cures and advocating for patients and their families. And a few actually provide training for caregivers of loved ones with some form of dementia or neurological disorders. Palliative care and pain management might be mentioned in passing on a few of the sites, but there isn’t very much helpful information for caregivers and their loved ones on how to navigate through those two specific areas that can be part of fighting a life threatening illness.

Looking at all these organizations I could identify with a part of one site and something from another. After all, caregiving is caregiving – but yet, not the same. Caring for a child with leukemia is different than caring for a spouse with Stage 4 lung cancer which is different than caring for a parent with Alzheimer’s. Each caregiving challenge is different.

Different and yet the same. It got me thinking: What do caregivers have in common? What are their lives like? Even with the challenges of different illnesses what are the common struggles caregivers have to overcome? Caregivers have lives that are multidimensional and made up of more than caregiving.

My husband, Stewart, had been self-employed for many years and I worked with him handling the bookkeeping and finances for his business; he was on Medicare and I have my own insurance. When he was diagnosed, there was no employer to deal with or major insurance concerns. Our daughters were grown, building their own careers, and were able to help with the caregiving. There were no other dependents vying for my time and attention. My only focus was Stewart. Since he was a medical writer and researcher, specializing in pain and pain management, whatever questions we had regarding anything medical – treatments, medications, complementary therapies – were investigated and explored long before we reached the doctor’s office.

Perhaps because of our particular situation, I was rarely asked by any medical professional if I required assistance with my caregiving duties. It was assumed that I knew how to manage medications, recognize side effects, know what to do when an emergency happened, what constituted an emergency and, on one occasion, inject antibiotics through a PIC line after one brief demonstration by a home health care nurse.

How do other caregivers manage their caregiving responsibilities with outside careers, children still at home and without the availability of someone with the knowledge and expertise to research their medical questions immediately for them? How do you fit everything into a 24-hour day without worrying about the regularity of your paycheck and the health insurance that is paying for most of those doctors, prescriptions and medical treatments? Where do you find help? There are friends and family but they have lives, too. Many of them are caregivers.

Who are these women and men who spend each day struggling to balance work and other commitments with caregiving? What does a caregiver look like?

Then, one day, I read an article in the business section of the Chicago Tribune. Jill Schlesinger wrote about the financial and emotional costs of being a caregiver. At the article’s center was the Transamerica Institute’s inaugural study of caregivers, “The Many Faces of Caregivers: A Close-Up Look at Caregiving and Its Impact”. It is a demographic portrait of caregivers, 299 pages long, with colorful charts, graphs and easy to understand summaries and key highlights. The survey of 3,074 caregivers was conducted by Harris Poll between March 13 and April 21, 2017. The caregivers met the following criteria:

  • U.S. residents, age 18 or older
  • Nonprofessional / unpaid caregivers
  • Provided care for a relative or friend at any time in the past 12 months.

Here are the key findings.

Portrait of Caregivers

  • 53% are women and 47% are men
  • 34% are Millennials (born 1979-2000); 22% are Generation X (born 1965-1978); 37% are Baby Boomers (born 1946-1964); 7% are Matures (born before 1946)
  • 39% are employed full-time; 13% are employed part-time; 8% are self-employed; 40% are not employed
  • 18% had a household income (HHI) of less than $25K in 2016; 17% had an HHI between $25K – $49K; 30% had an HHI between $50K-$99K; 28% had an HHI of $100K +; 7% declined to answer
  • 91% are insured through employers, unions or trade associations; 4% have private insurance through a spouse or parent; 8% have their own private insurance; 20% are on Medicare; 9% are on Medicaid; 2% are insured through the military or VA; <1% are insured through a college or university; 3% receive insurance through the public health exchange; 9% do not have insurance

Daily Lives and Duties

  • 74% providing care for 1+ years
  • 36% spend 100+ hours per month providing care
  • 54% providing medical/nursing-related tasks learned from hospital or doctors’ office personnel

Precarious Employment

  • 52% are employed full-time (39%) or part-time (13%)
  • 28% experienced adverse actions taken by employers due to caregiving responsibilities

Financial Implications

  • 75% receive no form of payment and spend $150 (median) out-of-pocket per month on expenses for care recipient ($1800 per year)
  • Estimated median retirement savings is $68,000
  • 18% have taken a loan, hardship withdrawal and/or early withdrawal from retirement accounts   

Health Implications

  • 17% of caregivers indicated that their general health has gotten worse or declined since becoming a caregiver
  • 55% say their caregiving duties leave them physically or emotional exhausted

All of these key findings were then broken down by each demographic:

  • Employment status
  • Gender
  • Generation
  • Household income
  • Ethnicity
  • Primary caregiver/or not
  • Volunteered to be caregiver/or not

The study concluded that “A large portion of the population is entering the age range where the need for them to become caregivers becomes more likely. At the same time, many find themselves financially unprepared for retirement and need to stay in the workforce longer. Those factors, coupled with a healthcare system that is often difficult to navigate, result in an environment that is challenging for all concerned. … Unpaid caregivers face a host of financial and health-related challenges – both for themselves and those they care for.”

The findings and summaries are fascinating and portray a very clear picture of who caregivers are and the challenges they face through their caregiving. It also indicates that very little continues to be done to provide support, education and relief for caregivers. But the fact that the survey was even conducted is a step in the right direction. Is it self-serving coming from a huge insurance company? Perhaps. But helpful none the less. It is critical to educate the public, businesses, government at all levels and the health care community about the vital role caregivers have in our society.

The more I explored these sites and looked back on my experiences with caregiving it became clear that there are basic principles that should provide guidance for the support of caregivers and their families.

A “Statement of Principles” was developed in 2003 and presented at the First National Town Hall Meeting on Family Caregiving in February, 2004 on Capitol Hill, Washington, D.C. It stated: 

  • Family caregivers are a critical part of healthcare.
  • Caregivers need support against the financial, physical and emotional consequences of caregiving.
  • Caregivers require access to respite care.
  • Caregivers must have a supportive workplace.
  • Education and training is needed by caregivers so they can be successful at caregiving.
  • Caregivers need support services that are coordinated across all care settings.
  • Caregivers need a well-qualified healthcare workforce (including medical staff and social services) across all care settings.
  • It is important for caregivers to receive ongoing assessments of what assistance and support is needed.

Caregiving now can last for years due to advances in medicine that allow patients to live longer; is often done long-distance since family members no longer live in close proximity to one another; women still are the primary caregivers, but more men are assuming a primary caregiver role; those caregivers in the workforce must constantly find a balance between caregiving and work responsibilities; and caregivers are inadequately prepared and trained for their caregiving roles. With a shortage of home healthcare workers, caregivers now shoulder more responsibility as both healthcare and social-service providers.

Caregiving can be isolating but it does not exist in a vacuum.

And as Rosalynn Carter, former First Lady of United States, wrote in her book on caregiving, “There are four kinds of people in this world – those who are caregivers, those who have been caregivers, those who will be caregivers, and those who will need caregivers.”