Advice for in-home caregivers

A geriatrician's message to the families of the patients she sends home.

I love my job, but I hate “the talk” that often comes with it.

I’m a geriatrician, a doctor who specializes in caring for older adults and those coping with disabilities. I feel honored to be able to help my patients, and it’s immensely satisfying to address their medical needs, which are often complex and demanding.

So what’s the problem? “The talk.” That’s when I tell a family that their loved one is ready to go home — and then gently let them know that they’ll pay for it with difficult days, sleepless nights and unexpected expenses they may not be able to afford.

Because the fact is, their loved one will almost certainly need more care after the hospital, and those family members will have to provide most of it. It doesn’t matter that every adult in the family may already be working fulltime; Medicare doesn’t cover caregiving, and neither does commercial medical insurance. Most people don’t have long-term care insurance, because it’s expensive and hard to find. I usually don’t even bother to mention the shortage of professional caregivers, such as home health aides, which is expected to worsen over the coming years.

In short, I’m telling the family that they’ve just landed in the middle of our national caregiving crisis. Every day for the next 12 years, 10,000 baby boomers will turn 65, but we’re woefully unprepared to deal with the needs of an aging population. Some of this is the downside of medical success. People are living longer than ever before, but many of them have chronic conditions like diabetes and heart disease, or they are too frail to take care of themselves. In addition, when people are hospitalized these days, they’re sent home “quicker and sicker” than in decades past, leaving family members to pick up the slack.

All of this makes a tough job even tougher. Everyone has heard that informal caregiving is associated with a host of problems, including anxiety, depression, worry, social isolation and even increased mortality risk, and I’ve seen the strain on the faces of my patients’ family members to prove it. And yet my perspective, as a geriatrician and as a one-time family caregiver myself, is hopeful.

Recent reappraisals of the research suggest that when caregivers have adequate internal and external resources, the experience can offer health benefits and be intensely meaningful. That too fits with my experience of adult caregivers who tell me about creating a different kind of relationship with aging parents or who are glad that their own children are witnessing what it means to give back.

So how can we provide the support needed to make caregiving feasible and even rewarding? Solutions are bubbling up, and we have to look for them, build on them and demand more of them.

We must:

Plan

The caregiving conundrum is complex, and many factors can help determine whether the experience is ultimately a positive or negative one. That means there are numerous ways to make a difference. Important approaches include workplace policies for employees with ailing parents, discharge planning that recognizes the abilities and limitations of family members, respite options to lighten the emotional weight of caregiving and the allocation of resources that can lessen the financial burden of providing for a loved one. Under the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act, which took effect earlier this year, the Secretary of Health and Human Services (HHS) will help create an initial national strategy to help prioritize resources. Everyone who may someday provide or need caregiving should pay attention and weigh in as this blueprint is developed. (Employers, this means you, too. Studies show that nearly 20 percent of your employees juggle the work they do for you with a second shift as a caregiver at home.)

Educate

Whether caregiving obligations creep up slowly or descend suddenly after a medical crisis, family members often feel adrift. We should support organizations like AARP and Family Caregiver Alliance, which do a great service by providing easy-to-follow guides and checklists. In addition, every hospital should have a caregiver resource center, where patients and families can learn how to perform their roles and advocate for their needs. Employers and community-based organizations can also provide an important resource by making social workers accessible: These professionals can help family members recognize that they are in fact caregivers (an important first step!) and identify benefits and other resources that may be available.

Engage

Family caregivers in New York State should be aware of the Caregiver Advise, Record and Enable (CARE) Act, passed in 2016. It requires providers to loop in caregivers at critical junctures so treatment plans reflect and support their capabilities. Surprisingly, this is not done often enough. If you’re a caregiver, make sure you’re included in these conversations, and speak up if a plan isn’t realistic.

Report

In medicine and in policy, metrics matter. The only way family caregiving will get more resources is to show that it has an impact on the clinical outcomes of patients — extending lives, easing suffering and reducing health care costs. We must support research on caregiving’s short- and long-term impacts on health outcomes.

America is aging — by 2030, nearly a fifth of the US population will be 65 or older. We can all be grateful for the medical progress that continues to add years to our lives. But it will take a PEER approach — planning, educating, engaging and reporting — to strengthen the support system that we need for our families. That way, whether we are tending to a loved one or being tended to ourselves, we will be able to experience the rewards and life-affirming satisfactions of caregiving.

This op-ed appeared in Psychology Today.

Northwell supports patients and their loved ones as they progress through chronic illnesses.