Going through her mail, Kendra slices open an envelope from her preferred airline. Inside she finds a hefty gray card with her name etched on it. The 36-year old reads the enclosed letter informing her of her “achievement.” She has reached Platinum status as a frequent flyer. But, her newfound “status” is not because she is a regular business traveler, but because she is a caregiver.

Kendra is among a growing number of Millennials caring for ailing parents. A 2018 Associated Press-NORC reports that one-third of Americans under 40 consider themselves a caregiver. Two years ago Kendra’s 71 year-old mother began having difficulty managing her diabetes. Divorced many years ago, her mother lives alone. Simply telephoning every evening was not enough to allay Kendra’s stress about her mother’s wellbeing. Now, nearly every other week, the rising public relations executive flies from Philadelphia to Sacramento to help her mother with maintaining the house, checking in on her diet, and managing medications.

Caregiving is a fact of life that presents several paradoxes. Here is the first paradox: even when needed, it is never wanted. Kendra now finds the end of each visit punctuated by an argument with her mother. Her mother tells Kendra that traveling to Sacramento is too expensive and takes too much time from her work and social life. In short, Kendra’s mother argues she does not need her daughter’s help.

Are you a caregiver?

You might be without even knowing it.

In 2018, 40 million Americans were unpaid caregivers, according to AARP. Many of them are working full-time jobs or raising children while caregiving.

You may hear “caregiver” and think of lifting a loved one out of bed in the morning, pushing them in a wheelchair in the afternoon, and bathing them at night. You may think of adult diapers, medication bottles, and compression socks. But not everything caregivers do is health related or complex – a phone call to say hello, scheduling an appliance repair, or dropping off groceries is an act of caregiving.

The wide range of caregiving tasks and acts of love lead to a second caregiving paradox: People who aid their parents, spouses, partners, siblings, and other loved ones, do not see themselves as caregivers—they see themselves as just being helpful, being a good family member or friend. But they are caregivers, even if they don’t give themselves the label.

Dorothy, 85-years old, lives alone and does most things on her own. Dorothy’s Gen X, 49 year-old daughter, Karen, stops by after work a few days a week to visit. On weekends Karen takes her mom grocery shopping and once a month helps her pay bills. When told that she was a caregiver, Karen looks blankly away, and robotically replies, “I am just trying to be a good daughter, never thought I was a caregiver.”

For others, caregiving is a full-time responsibility that presents a third caregiving paradox: Caregiving is universal, a natural part of living in an era of longer lifespans, but rarely discussed, let alone planned.

Sean and Pat have been married for 55 years. Pat had a minor stroke and fell three years ago. She never gained back her full mobility. Unable to exercise, she has put on weight, and is increasingly dependent upon Sean for nearly everything. Sean celebrates his 80th birthday this year and is managing his own physical limitations making lifting and moving his wife more difficult each day. Neither Sean, nor Pat, ever thought they would move from their family home, but Sean wonders how long he can care for his wife. Although he is not sure what assisted living options might be available, Pat ends the conversation of moving before Sean can even explore any alternatives with her. Sean remarks, “We planned for retirement, but we never planned for this.”

One result of these three paradoxes is that caregiving is a phenomenon—who does it, how we do it, its impacts, its details, how to plan for it —is remarkably under-explored at the profoundly human level. While we are awash in statistics, as to its scope, the essential, unpaid, and under-appreciated work of caregivers remains largely unseen in the shadows.

The Massachusetts Institute of Technology AgeLab which, in full disclosure, I lead, is building an international research panel of caregivers called CareHive. To learn more, visit the MIT AgeLab CareHive website or view our video. CareHive will bring to light what it means to be a caregiver, the many ways that caregivers provide help, and how caregiving affects the lives of those receiving help and the caregivers themselves. If you are a caregiver, please consider joining thousands of others from around the world by signing up for the AgeLab’s CareHive, which engages caregivers in research.

We need to hear from you.

Here is how to help. First, sign up on the MIT AgeLab CareHive site and answer a few questions. Second, you will be asked periodically to participate in follow-up surveys, perhaps interviews, and, for some, experiments, all at your convenience. Your personal information will be confidential, but the insights we develop from caregivers like you, will inform research to improve the lives of older people and those that care for them.

Often caregivers lament, no one “asks about what I do, or how I am.”  So now, we are asking in the belief that CareHive will help us to understand how technology might help caregivers; the many other ways that caregivers need help to provide care to others and to care for themselves; and how to plan for this universally experienced fact of life.