Skip to main content

Caring, and the Family Caregivers We Don’t See



Over lunch at a restaurant in Manhattan, my father and I talked about long-term care insurance and the emergence of senior centers and nursing homes across the U.S. that offer a variety of ethnic cuisines and cultural events, catering not only to a growing population of adults over 65, but also, to an increasingly diverse population of adults who call the U.S. their home. This conversation was different from many similar ones before it – we weren’t talking about my research; we were talking about our own lives.

My parents immigrated to the U.S. in the late ‘70s and early ‘80s, following their parents’ advice on professional opportunities that seemed unimaginable in India at the time. Although they considered moving back soon after to care for their aging parents and to raise children, they ultimately decided to stay in the U.S. As I chronicled earlier, my paternal grandparents lived with us until I completed middle school, at which point they returned to India and lived with my maternal grandparents who were nearly 20 years younger. The experiences I had observing my grandparents and providing assistance with activities ranging from injecting insulin to walking and reading the newspaper were formative to my current research interests in aging and caregiving. One day I asked my parents when they realized they would be caregivers for their parents. They said: “I wouldn’t say we were caregivers; we were just caring for them”. Eventually, they realized that the “activities” they supported fit the role of “caregiver”—but it wasn’t a role they identified with until I convinced them of it. It struck me then, that as a society we have underestimated the prevalence of family caregivers and thus have undermined the value – economically and socially – of the care provided to older adults by family members.

My parents always knew that they would be involved in providing care to their parents, but the logistics arose more arbitrarily. My paternal grandparents visited the U.S. quite frequently, and it so happened that their health declined during one of their regular visits. They stayed for an extended period of time until returning to India, where they wished to “age in place” to the extent possible. In fact, my maternal grandparents who were about 15 years younger became their “caregivers” as the quality of nursing homes and formal care was either notoriously poor or appallingly expensive at the time. In their own old age, my maternal grandparents decided to stay in India due to their support system; my grandfather still lives there. Being far from my grandparents, my parents didn’t watch their parents age; but they can both recall the moment when they realized their parents were growing old.

There are over 40 million family caregivers of older adults in the U.S. [1] but long-distance caregiving is an unquantified area. The prevalence of family members who provide concerted care to their older relatives, locally, cross-nationally, and internationally is likely exorbitant. The meaning of being a caregiver likely changes when we begin to consider these other types of support.

The distinction between caring and caregiving poses a conundrum when it comes to policies. When we pick up the phone to check in on our parent who fell yesterday in his/her home across the country, are we caregiving or are we “just” caring? When we fly to another country to help our older uncle recover from surgery, are we a caregiver or are we caring? The conundrum seems to become clear when our policies are framed such that a “caregiver” performs specific supportive activities that have been predefined; others who provide daily support in other ways do not receive a formal identity; and those who provide support long-distance are probably not considered at all. Individuals providing support to their older family members who do not recognize themselves as “caregivers”, much like my parents, may not read into the Family and Medical Leave Act or their workplace policies. My parents often reflect now on their being fortunate to have flexible employers who were respectful and considerate of their need to travel briefly for post-operative and end-of-life care; but it seems that this flexibility is rare. Policies may certainly be misused, which introduces the complexity of developing family caregiving policies; yet, we first need to identify how to improve policies that currently seem to neglect entire groups of stakeholders.

In my work, I urge families to start discussions about aging and caregiving early to minimize uncertainties that may emerge later about health care, medical decisions, financial, or other decisions. Over lunch, my dad asked for my advice, specifying “You convinced Mom and I to start planning”. In that moment I realized how difficult these conversations really are. My observations of the support my parents provided to their parents—and to me, simultaneously—had always made me think about giving back and doing the same. Switching roles again, my dad advised regarding difficulty of providing this type of care. Initially, I thought he meant the time, physical, and mental commitment and resources needed to be a caregiver. But as I reflected, I think he meant—from his own experience—that it is incredibly difficult to watch your loved one, who had at one time sprinted across the tennis court when you fell suddenly, ask you to slow down so they can catch up. My mom expressed recently upon the passing of her mother that she felt like she didn’t have a chance to grieve— the 14 hour flight to India was a passage of time that seemed to force her to delay grieving until an evening one year later when she described the first time her mother wore the bright pink sari I found, that had somehow maintained vigor in its color and in the nostalgia it generated, for decades.

Through this article, I hope to spark conversations about what being a caregiver means, and how as a society, we can support family caregivers—those we see as well as those we don’t see. Each person’s circumstances may be different; some may opt for formal caregiving for older relatives, and other family dynamics may shape these decisions and sentiments. Yet, the policies—at federal, state, and institutional levels—that we develop and improve must recognize and understand the nuances of caregiving, in order to ensure the wellbeing of caregivers as well as the relatives they may care for. 



by: Minakshi Raj

Minakshi Raj (@MinaRaj91), is a 5th year PhD candidate at the University of Michigan in the Department of Health Management and Policy.

Comments

Anonymous said…
May I recommend a recent book published about this very issue. THE UNEXPECTED JOURNEY OF CARING by Thomson and White. Excellent articulation of the role and its difficulties in this society. Indeed there must be policy change or this invisible work/care force will be forced to succumb to the corporate warehousing of our elders and medically fragile children and young adults. There are many that, given the support they need, are happy doing this caring.That support, however, is often dictated by the larger health care model (business).
Thanks for writing this.

Popular posts from this blog

The Dangers of Fleet Enemas

The dangers of oral sodium phosphate preparations are fairly well known in the medical community. In 2006 the FDA issued it’s first warning that patients taking oral sodium phosphate preparations are at risk for potential for acute kidney injury. Two years later, over-the-counter preparations of these drugs were voluntarily withdrawn by the manufacturers.  Those agents still available by prescription were given black box warnings mainly due to acute phosphate nephropathy that can result in renal failure, especially in older adults. Despite all this talk of oral preparations, little was mentioned about a sodium phosphate preparation that is still available over-the-counter – the Fleet enema.

Why Oral Sodium Phosphate Preparations Are Dangerous 

Before we go into the risks of Fleet enemas, lets spend just a couple sentences on why oral sodium phosphate preparations carry significant risks. First, oral sodium phosphate preparations can cause significant fluid shifts within the colon …

Length of Stay in Nursing Homes at the End of Life

One out of every four of us will die while residing in a nursing home. For most of us, that stay in a nursing home will be brief, although this may depend upon social and demographic variables like our gender, net worth, and marital status. These are the conclusions of an important new study published in JAGS by Kelly and colleagues (many of whom are geripal contributors, including Alex Smith and Ken Covinsky).

The study authors used data from the Health and Retirement Study (HRS) to describe the lengths of stay of older adults who resided in nursing homes at the end of life. What they found was that out of the 8,433 study participants who died between 1992 and 2006, 27.3% of resided in a nursing home prior to their death. Most of these patients (70%) actually died in the nursing home without being transferred to another setting like a hospital.

 The length of stay data were striking:

the median length of stay in a nursing home before death was 5 months the average length of stay was l…

Opening the Black Box of LTACs: Podcast with Anil Makam

What happens in Long Term Acute Care Hospitals, or LTACs (pronounced L-tacs)?  I've never been in one.  I've sent patients to them - usually patients with long ICU stays, chronically critically ill, with a gastric feeding tube and a trach for ventilator support.  For those patients, the goals (usually as articulated by the family) are based on a hope for recovery of function and a return home.

And yet we learn some surprising things from Anil Makam, Assistant Professor of Medicine at UCSF.  In his JAGS study of about 14,000 patients admitted to LTACHs, the average patient spent two thirds of his or her remaining life in an institutional settings (including hospitals, LTACs and skilled nursing facilities).  One third died in an LTAC, never returning home.

So you would think with this population of older people with serious illness and a shorter prognosis than many cancers, we would have robust geriatrics and palliative care in LTACs?  Right? Wrong.

3% were seen by a geriatrici…