By Carol Zernial
WellMed Charitable Foundation Executive Director

Caregivers sometimes have to make tough decisions – literally decisions of life and death. It doesn’t matter if we knew this moment was coming. It doesn’t lessen the intensity of the decision if the person is very old or in poor health. The question will be asked: What do you want to do now? But that’s not really the question, is it?

When we are making decisions about surgery, ventilators, feeding tubes, Do Not Resuscitate (DNR) orders, or even a decision to go for the full code – to try everything humanly possible – it’s not really a question of what we want to do. The real question is what does the person wants to do who is facing delicate surgery, life-prolonging interventions, or even death.

Hopefully, we have had the opportunity to have these discussions with the person for whom we are caring. Knowing clearly what the person would want if they can’t communicate for themselves is a lifesaver for us. Any discomfort we may have in starting the conversation about death with a loved one – of any age really – will become a great source of strength and comfort in a dark hour when we know what they would say.

It’s important to repeat this conversation as our loved one gets older, gets sicker, is in greater pain or, in the most likely outcome, is deteriorating. A person might make a different choice if the pain becomes too great or the effort to stay alive doesn’t equal the quality of life.

The question is not what we want. The question is do we know what our loved one would want at this time and in this situation. We have to step back from ourselves and be their voice – no matter how difficult and no matter how much we might want to disagree.

We might have to stand up for a decision we know our loved one would want against the loud voices of other family members. We might have to summon all of our strength to say, “Please just make them comfortable” knowing that comfortable means allowing our loved one to slip away.

The matriarch of our family, my 97-year-old great-aunt, recently passed away. In addition to her many other interests, she had formed a death and dying “club” where she and her older friends talked about what they wanted at the end of life. We all knew exactly what she wanted even when she could no longer say the words. When her time came, her friends and family came to her apartment in a steady stream for three days – holding her hand, brushing her forehead, whispering words of love and friendship. It was an amazing ritual.

We are not all going to be so “lucky” as my aunt, but she created this possibility. Embracing difficult conversations about life and death, and respecting these final wishes mean that we can all live life, up to the last moment, on our own terms.

WellMed Charitable Foundation Executive Director Carol Zernial is a noted gerontologist, radio show host, and emeritus 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. Find out more at www.CaregiverSOS.org or toll-free at 1-866-390-6491.

By Carol Zernial
WellMed Charitable Foundation Executive Director

How many family caregivers have sacrificed their financial futures through the act of caregiving? That was the question that ran through my mind as I listened to Elizabeth White, author of “Fifty-Five Unemployed and Faking Normal.” She eloquently described how a well-educated, middle income, professional woman fell into poverty. She was also middle-aged, meaning that she was unprepared to fight the sinking economy of the last recession and ageist forces that permeate American culture.

She wasn’t a caregiver, but she embodies the plight many family caregivers, particularly women, will face. When a woman quits her job to care for a loved one, she reduces her income over a lifetime by over $300,000 in lost wages and retirement earnings. She was already paid less than her male counterparts. She was already less likely be promoted, because she was a woman who might get married, might have children and might need to take time off to care for a family member.

The chilling truth is that most baby boomers, male and female, live either in debt, or paycheck to paycheck. Elizabeth quoted a statistic that most of us can’t raise more than $400 in an emergency. Of course, caregivers never find themselves in emergency situations.

Her most haunting comment was that Americans didn’t really want to hear about her slide into debt. People don’t have much sympathy for others who don’t manage their money. I wonder when two-thirds of an entire generation are financially failing in their old age if we will assume they did something wrong. Or, as she stated, will blame them for drinking too much Starbucks.

Elizabeth talked about the people she became aware of — while she was pretending to be okay — who were faking normal too. Caregivers do that all the time. We’ve got everything under control. We don’t need any help. As reticent as we are to admit we’re physically and emotionally exhausted and are hanging on by a thread, caregivers are probably even more
hesitant to admit they can’t make ends meet as well.

I thought of family members and friends who are just like Elizabeth. They’re single without retirement income other than Social Security and perhaps a little savings. Some have grown children. And many are caregivers.

What if we do everything right and still fail? We return the love of our family members with the care they need. We sacrifice our time and talents that were paid for with years of education or opportunities we turned down to be closer to home. Will others not care that we were the ones who did care?

Elizabeth talked about the importance of getting off of our thrones and admitting that we need help. This might be a true financial restructuring. But it could also be admitting to our siblings that we can’t go it alone. It could mean planning now for life post-caregiving to try to improve our odds in retirement. For me, it means seeing through the mask of faking normal in the faces of the people around me. And raising my hand to support those of us who really are caring.

WellMed Charitable Foundation Executive Director Carol Zernial is a noted gerontologist, radio show host, and immediate past 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. Find out more at CaregiverSOS.org or toll-free at 1-866-390-6491.

By Dr. Jamie Huysman, PsyD, LCSW

A heartfelt CONGRATULATIONS to all cancer survivors! We are fortunate that we have access to so many unique stories of personal triumph. From the Norman Cousins classic, “Laughter is the Best Medicine” to Joan Lunden’s courageous “Had I Known,” each of these inspirational stories give hope and help to those who follow in their footsteps.

While the “official” survival celebration took place on June 3, every day marks a personal anniversary and victory over this too common perilous life journey. It’s hard to imagine that there is anyone in America that has more than a couple of degrees of separation from its effect on the one battling it or their friends and family.

Cancer is a very personal disease. I have spoken to many who have battled it and many whose job it was to care for the wounded. They all say the same thing; they all say, “It changes you.”

And so the walks, the 5K and 10K runs and relays, the dinners, and the pledge drives continue because we have to do something. We fight the good fight for all of those who lost their battles as well as those who have not yet seen combat.

The exact origin of cancer is not known, but there is evidence of cancer in the bones of a dinosaur found from 150 million years ago (American Cancer Society). Regrettably, it did not die out with them.

According to a 2014 article in Discover Magazine, an ancient Egyptian medical text, called the Edwin Smyth Papyrus that dates back to 1600 B.C., is widely believed to contain the earliest known reference to a cancerous tumor and a description of what is now accepted to be breast cancer.

There’s evidence of cancer in roughly 200 individuals in the human fossil record. In 2013 British researchers recently uncovered the oldest example of human cancer in a 3,200-year-old male skeleton found at an archeological site in northern Sudan.This is widely known as the oldest complete skeleton of a human displaying metastatic cancer.

Literally, billions of dollars are spent each year on cancer-fighting drugs with horrific side effects. The cost of new drugs approved to treat cancer is itself life-threatening for many Americans. Not to mention the myriad of drugs prescribed to combat the side effects. Is it any wonder that the word “cancer” can send shockwaves of palpable fear through a room?

Current environmental concerns and considerations aside, cancer has been part of our evolutionary journey throughout the Ages. It had its place in the primordial ooze and has now become a deciding factor in the human gene pool; it is part of our human DNA.

It is DNA research that holds the best hope for, if not finding a cure, at least abating the progression of the seemingly endless ‘kinds’ of cancer that have been identified and diagnosed. There is research pointing to the role of infectious diseases as precursors to cancer.

What is lost many times in the treatment of this 21st Century plague is the human element. While clinicians need to avoid the stress of having to deliver a dreaded diagnosis, patients need to know that they will have access to all available resources of support, the least of which is their own attitude toward being sick in the first place.

Celebrating cancer survivors forges hope; for without hope, all is for naught.

Dr. Jamie is a popular keynote speaker, media expert, and author. He co-authored the acclaimed “Take Your Oxygen First: Protecting Your Health & Happiness While Caring for a Loved One with Memory Loss.” Dr. Huysman writes for Caregiver SOS, Connections, JoanLunden.com, Huddol.com, and blogs on PsychologyToday.com.

Lost in today’s healthcare headlines about social determinants of health, such as housing, transportation and food insecurity, is greater attention to the original social context of most of our health habits—family. Insurers and health systems are turning toward engaging patients’ family caregivers as another means of decreasing healthcare costs.

It has been a slow turn, to be sure. Despite decades of family systems thinking and clinical approaches, healthcare remains predominantly patient-centric in its policies, practices and research. But the need to reduce hospital readmissions and institutionalization rates are beginning to prod large systems to create more robust family caregiver support programs, especially in geriatric, home medicine, dementia, hospice and palliative care. The logic behind these moves would seem indisputable, given America’s aging population and higher incidence of chronic and serious illnesses and functional deficits. By bolstering the know-how and resilience of family caregivers, insurers and health systems are hoping older adults’ illnesses and disabilities will be better managed at home and therefore require less intensive and expensive services.

Many of these efforts seem to incorporate principles derived from evidence-based dementia caregiver support programs, such as REACH-II and the New York University Caregiver Intervention, during the past 30 years:

A patient- and family-centered care philosophy: There is recognition that spouses and other family members play key roles in communicating with healthcare professionals, picking up medications, buying and cooking healthy foods, and overseeing treatment plans as they are implemented in the real lives of patients in their home settings.

Formal and structured family caregiver support programs: Much of what passes for family intervention in healthcare is still informal and reactive: Physicians or nurses express concern about a troubled or difficult family member and then social workers scramble to make brief interventions. In contrast, the new family caregiver support programs strive to explicitly engage the patients’ family members early on as a normal part of comprehensive care. They use family caregiver navigators—distinct from patient care coordinators—who focus solely on caregiver needs for guidance, support, education and, in some instances, emotional counseling.

Formal and timely caregiver assessment: Like with traditional healthcare, these new programs ask about who’s in the family and solicit questions about the patients’ medical conditions and treatments. But they go beyond that, evaluating family members’ knowledge, abilities and willingness to participate in care, in addition to their degree of emotional distress with instruments such as the Zarit Caregiver Burden Scale, the Benjamin Rose Institute Caregiver Strain Instrument, and the American Medical Association Caregiver Self-Assessment Questionnaire.

Linkage to community-based organizations: To address all social determinants of health, healthcare and social services agencies need to more closely coordinate their helping efforts. For a more family-engaged healthcare, that means hospitals and outpatient clinics make earlier referrals with close follow-up to local Area Agencies on Aging and local chapters of disease-specific organizations such as the Alzheimer’s Association.

So who are the national players in this emerging trend?

» Twenty-six states now have contracted with managed care companies (e.g., United Healthcare and AmeriHealth Caritas) to manage the healthcare services for their Medicaid recipients. That includes so-called “dual eligibles” (older and disabled patients with Medicare and Medicaid) who are receiving Medicaid Long-Term Services and Supports (home- and community-based services and nursing facilities). To hold down costs, some of these managed care insurers have been experimenting with various means of better supporting family caregivers in order to forestall or prevent patients’ hospitalizations and placements in institutions. A November 2017 AARP Public Policy Institute report (see link below) describes some of these innovations, including increased caregiver engagement, assessment, respite and instruction.

» Dementia–unrelenting and without current medical cure—is the costliest of all American diseases despite the fact that over 70% of dementia patients are primarily cared for by unpaid family members. If these family members falter because of the rigors of dementia caregiving, then patients quickly wind up in emergency rooms, hospitals and skilled nursing facilities. It’s no surprise then that dementia caregivers are the target for many enhanced family engagement endeavors. Baylor Scott & White in Texas ran a pilot study that created individual care plans with caregiver supports, including a $750 month stipend for home care services. The results were improved overall functioning and decreased ER and hospital use for both the dementia patients and their family caregivers. Similarly, Alzheimer’s Greater Los Angeles helped create the Dementia Cal MediConnect program for dual eligibles which aims for better detection of patients with dementia, better working relationships between health systems and family caregivers, and better partnerships with dementia-specific community-based organizations.

» Geriatric/palliative medicine and family caregiving go hand in hand. WellMed, a large network of ambulatory facilities in Texas and Florida for Medicare subscribers, has caregiver specialists that reach out to family members at the time patients are admitted to its palliative care program. It offers them home visits, a telephonic support and education group, and an 8-session stress management program that has been found to lower caregiver burden and depression.

» At Dignity Health Central Coast in California, the family caregiver navigator makes an initial home visit to bring a caregiver gift basket and conduct a caregiver assessment before offering a range of services, including care coordination, a stress management program, and referrals to community agencies. She collaborates with promotores or community health workers to provide the caregivers with increased logistical and emotional support. The results: Decreased caregiver depression and reduced patient ER and hospital utilization.

These fledgling programs are noteworthy but rare. Other health systems have yet to follow suit. While Medicare ACOs have proliferated in recent years, few have implemented enhanced family engagement. And even with the existing programs mentioned above, few are employing providers with family systems training, such as medical family therapists.

But as long as America continues aging and value-based care spreads, family caregivers will inevitably play a larger role. It will be no longer adequate for clinicians to marginalize families or take their efforts for granted. The standard of care will require more of everything–education, support, guidance and, most of all, a spirit of partnership.

Barry J. Jacobs, Psy.D. is the author of The Emotional Survival Guide for Caregivers (Guilford, 2006), co-author of AARP Meditations for Caregivers (Da Capo, 2016), and the Director of Behavioral Sciences for the Crozer-Keystone Family Medicine Residency Program in Springfield, PA. In August, he will leave family medicine after nearly 24 years to become a healthcare consultant for Health Management Associates.

Resources
» AARP Public Policy Institute, “Emerging Innovations In Managed Long-Term Services and Supports for Family Caregivers”
» Cherry, D et al (2017). Dementia Cal MediConnect: Creating Partnerships Between Health Plans and Alzheimer’s Organizations in Improve Care in the Dual Eligibles Pilot. Public Policy and Aging Report, 27(S1): S12-17
» Stevens, AB & Thorud, JL (2016). The Symbiosis of Population Health and Family Caregiving Drives Effective Programs that Support Patients and Families, Generations, 39(4): 34-38

By Carol Zernial
WellMed Charitable Foundation Executive Director

The hospital. On the scale of caregiver heavy lifting, a hospital visit of any kind requires all hands on deck. Two weeks ago, I was meeting with hospitals who are trying to create robust programs helping family caregivers. This past week, I had two hospital visits among my family members for some first-hand experience. It’s probably not a surprise to find out these experiences went from very good to very not so great.

I came away from my meeting with the hospitals — who were working on identifying caregivers and ensuring they were empowered as part of the care team — feeling overwhelmingly positive. I was impressed to learn that some family caregivers were given official badges, employee discounts in the cafeteria, included in the care team meetings, and trained to get fresh blankets and water for their loved ones. It is indeed heartening to know that some hospitals are taking the Caregiver Advise, Record, Enable (CARE) Act seriously. They are identifying the caregivers involved and ensuring they have the information they need before the loved one is discharged. Family caregivers can help make the hospital stay, and transition to home or rehabilitation facility more successful when they understand what needs to happen, as well as accept their role.

Within a week of returning home, I got to put hospitals to the test on my own. When the first of my family members went to the hospital, it was a scheduled procedure. While I received only cursory attention from the physicians providing care, one of them did come back to the waiting room when he missed me to ensure I got a first-hand report, an extra effort I appreciated. The receptionist in the waiting room was lovely – getting up from her desk when things slowed down to check in with each family sitting in the chairs. She provided coffee, directions and comfort. The nurse in recovery was very helpful and happy to include me in the recovery process. Score one for the hospitals.

The second hospital involved one of my older family members in another state. This was not a positive experience at all. In fact, no one called to tell us, his closest relatives, that he was even in the hospital. He lay there completely alone for five days of tests and was returned back to the nursing home when they couldn’t find anything – too weak now to even get out of bed. He told us that he wanted to call us, but he couldn’t reach the phone from his bed. Heartbreaking. He may have been too frail or confused to ask, so why didn’t anyone ask him about his family. Just because he lives in a nursing home doesn’t mean that family members are not involved.

No score for this hospital and take extra points away from the nursing home who never called either.

I guess the final tally for the relationship between family caregivers and hospitals is somewhere between trying to get better and couldn’t get much worse. It certainly seems like one family member got better care because I was there, and the other left to decline because no one was there as his advocate.

My take away is that good care is a deliberate process for both family members and medical staff. I’m less concerned if the rationale to improve is monetary, regulatory, customer service oriented, or common sense. I applaud all efforts to support family caregivers in hospitals and across the health care system.

WellMed Charitable Foundation Executive Director Carol Zernial is a noted gerontologist, radio show host, and immediate past 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. Find out more at CaregiverSOS.org or toll-free at 1-866-390-6491.