Caregiving: navigating the shifting sands 

“In sickness and in health,” we promise.

Reflecting on the countless family members who support and care for their loved ones with serious illnesses like Parkinson’s disease,  I sometimes wonder if we have the order backward. Perhaps it should be “in health and in sickness,” because marriage vows are often made in “health” and sickness may visit in later life.

As part of my research, I have spoken with and learned from caregivers from across the country, particularly spouses and family members caring for a person living with Parkinson’s disease and related disorders. Because Parkinson’s often develops later in life, many caregivers are older adults managing their own health while taking on increasingly complex responsibilities. The challenge is not just the multiple complex and interconnected aspects of caregiving. Underlying all the tasks and activities are the endless uncertainties and worries: what the day will bring, whether you are doing enough, and where to turn as the ground beneath keeps shifting.

A patient may see a neurologist every six months. A spouse sees what happens every day and witnesses a million small changes in the patient, in their relationship and in how they must navigate a world when the path is unclear.

One caregiver described the experience simply: “We caregivers are under-noticed,” and added with a sigh, “If only we are recognized as someone more than just the chauffeur who brings the patient to their medical appointments.”

Caregivers are so much more than just that. They manage medications, monitor symptoms, schedule appointments, communicate with physicians, navigate patient portals, prepare meals, help with personal care, make financial decisions, and provide emotional support- all of this and more with little reserve left for themselves. Clinical care is understandably centered on the person with the diagnosis. We ask the patient how they are sleeping, eating, and functioning. We discuss symptoms and medications. But as one caregiver said, “Wouldn’t it be nice if everyone noticed us and asked How are YOU doing?”

Caregiving is more than burden

Research and clinical approaches have understandably focused on “caregiver burden,” encompassing the physical, emotional, social, and financial strain of caregiving.

But burden does not capture the whole experience, and more importantly, most caregivers do not see their loved ones as a “burden.” In one of our recent studies of people with Parkinson’s, family caregivers and paid caregivers, participants emphasized discussing caregiving roles early, the cumulative stress of everyday tasks, and the difficulty both patients and caregivers have asking for and receiving help.

They also talked about love, tenderness, gratitude, and closeness. Some described caregiving as an expression of their marriage vows. Another said it gave her the opportunity to grow as she witnessed her partner more completely as a human being.

Stress and love, exhaustion and strength, sadness and joy may seem like opposites, but they coexist in everyday life. The 13th-century poet and mystic Rumi described these experiences as part of simply “being human.” Nonetheless, in the midst of stress and suffering, it is hard to see the other side of the coin.

For caregivers, stress can surface from surprisingly ordinary places. What will I cook today? Did my spouse take the medication? Who will call the insurance company? Can I leave for an hour?

When two people have shared decisions and household chores for decades and suddenly one person must make nearly all of them, the small things become pebbles in the shoe.

This is why simply telling caregivers to practice “self-care,” though well-intentioned, can feel inadequate.

In another recent study, former Parkinson’s caregivers helped us map nine dimensions of caregiving, including disease management, care coordination, emotional and spiritual needs, physical care, and what we originally called “self-care.”

Caregivers in our research study helped us find a better term: preserving self.

A caregiver remains a person apart from caregiving. They still need friendship, sleep, meaning, hobbies, quiet, laughter and an identity that does not disappear because someone they love is sick. Self-care can feel abstract when deep in the trenches of illness. Preserving self, however, points to the small acts that touch and connect with ourselves.

One caregiver I spoke with protected a very simple part of her morning: her coffee. Unless there was an emergency, those few minutes were hers to collect herself and begin the day.

The days can feel long and packed with “to-do” lists and caregivers often feel no one else knows their loved one better than them.

But knowing someone best does not mean doing everything alone.

We need to make help easier to give and receive

Asking for help sounds simple until someone needs to do it.

Caregivers may worry that asking means they cannot manage, while patients may resist help because independence matters deeply to them.

Health care professionals can make this easier by asking caregivers directly what has become difficult and revisiting that conversation as needs change. What worked two years ago may not work today.

But clinics cannot provide everything families need.

We face real shortages of nurses, home health aides, mental health professionals and other services. Many families cannot afford paid assistance. Those problems require policy solutions, but they also make stronger informal social networks increasingly important.

“Compassionate Communities” is a model gaining traction in some parts of the world. Ordinary people learn to support neighbors through serious illness, caregiving, end-of-life, and bereavement. Religious congregations have long done versions of this through meals, visits, and practical assistance. Neighborhoods, civic groups, extended families and circles of friends can do the same.

Professional care is only one part of what people need. Belongingness and sense of community are enhanced when communities provide that light during the dark days of illness. As our population grows older, we need to become better at seeing caregivers. This may require a whole community gathering to hold a lamp in the darkness, and asking the illuminating yet simple question:

How are YOU doing?

Sandhya Seshadri, Ph.D., M.A., M.S., is an Assistant Professor of Neurology and Assistant Director of Neuropalliative Care Research in the Neuropalliative Care Division of the Department of Neurology at the University of Rochester Medicine whose work focuses on caregiving and the lives of people and families living with Parkinson’s disease and related disorders.

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