How extending a hand to employee caregivers helps them and the firm, and some lessons from an eldercare journey
Caregiving, especially of close relatives like parents, can be a significant inflection point in one’s mental health. These moments warrant special attention from employers, family, friends, and ourselves.
We may be raising children with developmental needs, caring for sick or disabled relatives and friends, or looking after elderly parents. Sometimes we do many of these at once, putting our work lives, marriages, relationships, and families under enormous pressure.
Caregiving can be physically, psychologically, financially, and socially hard — often all at once. It requires being patient, attentive, compassionate, and dependable even if those we care for are difficult, or when unresolved conflicts bubble up and roles get reversed. This affects our sense of self. In caregiving, as in parenting, we often become known for our function, not our identity: we are “Richard’s daughter” or “Mrs. Herrera’s husband.”
Toggling between emotional and professional identities can be particularly hard for working caregivers. Their lives are unpredictable and emotional, different from the rational theater of work.
Last year my father and stepmother passed away. I helped care for them until the end, as I did for my mother and stepfather about a decade ago. It was a privilege but also a tremendous strain. In some ways being a single child reduces coordination costs and potential conflict with siblings; in other ways it is singularly lonely, and when your parents pass away, so to the keepers of memories.
Caregivers who are well-supported by their employer, as I was, and who prepare and keep perspective, can emerge from the experience with gratitude, pride, and a deeper sense of self — as well as a greater commitment to the firm and its staff.
Below I share what employers, supervisors, and colleagues can do to improve the caregiving process and lessons from my experiences.
Who are the caregivers, and how are they impacted?
In 2022, about 20% of U.S. adults, or nearly 50 million Americans, are caregivers; on average, they are in their mid-40s, often a peak professional and income-generating time. At least 40% are men, the fastest-growing category of caregivers in the US. The average commitment is 4.5 years.
They perform physical tasks (bathing, dressing, feeding, changing diapers, keeping house, and safekeeping) and medical care (dispensing medication, performing light medical functions such as dressing wounds, keeping ports and catheters clean, injecting drugs, and managing a feeding tube or oxygen). Caregivers are also patient advocates.
Often there is a logistics and financial component, which can be very challenging when elders, in particular, can become combative, be counter-productive (e.g., canceling appointments), and seem ungrateful. Some of the hardest moments might come from managing someone who insists they have no problems (and act to prove otherwise immediately). A feeling of helplessness and intense frustration can come from witnessing an elder’s misguided and self-damaging efforts to remain independent.
The stress of balancing caregiving responsibilities with workplace demands forces most caregivers to seek adjustments to their working hours, take a leave from their jobs, or even face discipline from their employers (8% receive a warning about performance and attendance). Only about half disclose their caregiving role to their supervisors.
About 60% are or have recently been employed — 56% work full time, averaging 34.7 hours weekly. They will often cut their hours (15% go from full-time to part-time) or end their careers earlier (5% retire early). Self-employed caregivers report a more significant impact on their careers. Within their extended families, they may also often be ‘chosen’ for or volunteer to provide care because they have better control of their work.
Life as a secondary patient
While beneficial to our loved ones and society, caregiving can endanger our psychic and mental health. About 40% of caregivers consider their situation emotionally stressful. Over half feel they don't have a choice but to do the work of caregiving, which worsens everything.
Unpredictability is a further source of pressure. A disastrous day might follow a good one. There is the perpetual stress of pending logistics issues or outright catastrophes — every text or phone call triggers cortisol.
Even more emotionally taxed are those caring for individuals with a mental health issue, a neurodegenerative disorder such as Alzheimer’s or dementia, or a long-term health problem.
Part of the process is often slow, quiet grief that results from losing touch with our identity and community as caregiving crowds out the rest. Friends may visit at first but then stay away. No one likes being reminded of what lies ahead. Our specific vulnerability to decline and grief, our inability to fix or master it, terrifies us. If we ignore it, we might get some small, false comfort that we can control it.
As a result, caregivers can become “secondary patients” to healthcare teams — more likely to engage in high-risk behaviors such as smoking and drinking, and more likely to have poor basic health indicators such as high BMI, blood pressure, and cholesterol, and to suffer from more fatigue and sleep disturbances. These, in turn, can lead to poor care and even elder abuse. Caregivers report that they are under-prepared and need help managing their stress. Some report higher levels of depression. Caregivers who experienced caregiving strain have a lower life expectancy.
The process can also be arduous on the children of caregivers. In my daughter’s words when we brought my mom out of a nursing home:
“So [my grandma] came here, to us, to our home, for the rest of her life. [….] I felt so powerless, useless, shocked. I didn’t cry once about any of this for 3 years. I couldn’t. It made it too real. I was only 11 and a half. I didn’t know how to deal with it. So I didn’t. For an entire six months I convinced myself that she was just visiting, nothing more.”
My mother lived with us for another five years. ”Then came the wheelchair, and she couldn't walk anymore,” my daughter wrote a few months into the experience. “I was horrified at the time, at myself, at life, at all of it.”
How can employers support active caregivers?
Caregivers spend nearly 24 hours a week on their “side job.” The burden has gotten worse in the pandemic with fewer resources and more turnover among professional caregivers. The situation is challenging for employers, too. “Caregivers are more likely to need to take time off, come in late, leave early, and take calls or check in on someone at home in the middle of the day,” an expert notes. “Caregivers are either turned down for promotions or feel unable to apply for promotions because they have to juggle other responsibilities at home.”
So how can companies attract and retain talent with caregiving responsibilities?
When possible, provide flexibility over working hours and location. Half of the caregivers who remain employed had flexible work hours and paid sick days. Many elders have disrupted sleep so chances are that your caregiving employee is up during the night on duty. Avoid scheduling early morning meetings with them, for example. If working from home is not an option, there might be a way to job share. About 39% of caregivers report that their employers provide paid caregiver leave, flexible work hours (56%), and paid sick days (58%).
Provide benefits and resources that help caregivers make better choices, which can include backup care assistance, consultations, and resources. A small 2021 survey by caregiving coordination technology platform Homethrive suggested that nearly 80% of caregivers did not have access to caregiver support benefits at their workplaces. Nearly two-thirds of employees believe their employer should offer caregiving coordination benefits; 85% would use it if they did. More than half of employees would change jobs to have access to such benefits, especially various options. It is also helpful to connect caregivers to resources and to think of the entire family as the caregiving unit — the set of individuals who need help. Offering counseling for the spouse of a dementia patient can help reduce depression, for example.
Expand support for leaves and other approaches to lessen the financial burden. In the US, the Family and Medical Leave Act “entitles eligible employees of covered employers to take unpaid, job-protected leave for specified family and medical reasons with continuation of group health insurance coverage under the same terms and conditions as if the employee had not taken leave.” Some employers might offer to cover 8 of the 12 weeks so the employee sustains income. Others might expand the notion of family and make more inclusive definitions— some of us care for nieces, nephews, patch family members, or partners, etc. Some also provide cover funeral expenses ($7,000 to $10,000 in the US).
Support financial literacy because taking care of finances for someone else is time-consuming and, for elders, often fraught with complexity. Costs escalate rapidly. The average cost for a nursing home is $228 per day in the US and double that in high-cost living areas; the average 24/7 home care is about $400 daily. A good Employee Assistance Program (EAP) can provide information and coordination resources, but most smaller firms don’t have one. Remind employees of the resources — more than 90% of employers (with more than 5000 employees) offer an EAP, but only half of their employees know about it. The AARP also has great information.
Create a space for the caregiving community to exchange ideas, discuss the rewards and challenges of caring for others, and support each other. At Harvard Business School, we started to gather as caregivers to exchange best practices and make policy suggestions to our employer; the group still meets. When we open up, we free others to open up about their struggles, and just feeling accepted, supported, and heard can help caregivers start to feel better. In the military, units that understand how to grieve together build unparalleled unity; the “band of brothers” stereotype rides on the back of tragedy — shared and digested as a team.
Understand what causes stress to your caregiving workers. Many employers offer one-size-fits-all benefits. Yet caregivers from different communities face specific challenges. One perennial wish is a supportive manager, yet companies under-invest in managers and need to train them in human affairs. The adage is that people don’t leave companies; they leave managers. And for two-thirds of us, the boss is the primary source of stress. But people will leave companies that do not enable even good managers to address the main areas of stress.
Support caregivers in activities that bring them joy. Vouchers or gift cards to be used for anything from dog walking services to home-delivered meal kits can make caregivers’ lives easier. Massages or painting classes can support self-cultivation and self-care.
How can employers support grieving caregivers?
Companies have a moral and practical obligation to find healthy and productive ways to manage their employees’ grief. Unresolved grief accounts for 15% of mental health disorders.
Expand bereavement time. Recovery from caregiving can be long and complex. The typical time offered by employers for bereavement in the US is three days. More generous employers offer up to seven days. However, bereaved caregivers often suffer on many fronts — they are usually exhausted; they have to deal with the paperwork and surprises no matter how well-prepared everything is; and they need to redefine who they are in and to the world after the loss of their loved one.
In The Gift, Auschwitz survivor Dr. Edith Eger argues that we cannot heal what we cannot feel. Yet many of us resort to extreme busyness and distraction, which reduce our ability to emote. When we are always on, we make it impossible to feel secure enough to embrace change.
At work, creating this space might mean providing more bereavement time and allowing people to take it in chunks because grief does not follow a schedule, and broadening the definition of those receiving care beyond parents, such as a godchild or trusted mentor.
Do not make assumptions about how the bereaved is feeling. Grief takes many forms, too, and we grieve differently at different times. When my mother passed away, I missed her physically. She had lost the ability to speak to Lewy Bodies Dementia, but we communicated non-verbally. For years, at night, I would write with one hand or read drafts aloud to her, which made them so much better. In contrast, my father and stepmother remained cognitively present until the end, and I miss their geopolitical and historical perspectives. I miss her touch and her smell; I miss their intellect and voices.
Resist the temptation of trying to fix. Stephen Covey’s book The 7 Habits of Highly Effective People explains that to be a good communicator, one has to be a great listener. We tend to listen to reply instead of listening to understand. He advocates the use of empathetic listening, which encourages you to repeat what you heard and what emotions you might have felt. Then it evolves resisting the urge to evaluate, scold, fix, and be nosy. My mother’s disease was long and complex; she came in and out of hospice twice. She used a wheelchair for the last three years, unable to feed herself and scratch her nose. Some colleagues and friends suggested, “it was a relief when she passed away.” That “dementia had already robbed me of my mother.” That “those who can no longer choose are better off dead.” Resist this temptation and tamper down on gossip. An empathetic answer might be, “thank you for letting me know. I am very sorry to hear this. Please let me know how the team and I can support you and your loved ones at this moment.”
Build ahead of the need and design support for the next generations coming into the workplace. They are reporting more mental health issues than their predecessors. This might make them less able to deal with caregiving stress. The Millenial caregiver has a different profile than a GenXer. Already before the pandemic, a survey by EAP provider Morneau Shepell showed that Millennials reported 20% more depression than GenXers and Baby Boomers did.
Managers should understand that the caregiving process is a profound “hope challenge.” Caregiving threatens attachments, continuously forces the provider to revisit and revise options, demands an ever-increasing supply of mastery resources, and may invoke a spiritual crisis.
Psychologist Anthony Scioli, who devoted his career to the study of hope, notes that attachment, survival, mastery, and spirituality are the four non-negotiable needs underlying the emotion of hoping and the virtue of fundamental hopefulness. With this in mind, managers who wish to be “hope providers” need to:
assist employed caregivers to sustain their primary attachments (while modeling trustworthiness and openness);
help them explore options (while modeling creative problem-solving);
validate and inspire their efforts by acknowledging the value of committed and mindful caregiving (while modeling steadfast adherence to transcendent values); and,
honor the spiritual gifts and painful lessons that come with tending to vulnerable loved ones (while modeling gratitude and respect).
How can you prepare yourself?
Much as employers and managers can support the process, so can individuals help themselves and others by preparing.
My daughter played a central role in that realization for me as paralysis set into my mother’s body and mind. As my then-young teen shared in a school essay:
When my grandmother would ask my mother twelve times what was for lunch and she would get annoyed at Moune (my grandmother’s nickname), I would never speak up, but one day I did, “You loved me before I made sense, why can’t you love your mother now that she doesn’t anymore?” And it’s true, why shouldn’t you love someone who loved you when you were little and spoke gibberish, when they’ve reverted back to the same thing?
Our experiences and individuality determine our thresholds for being caregivers and processing loss and suffering. Our coping mechanisms are imprinted over time as we learn from our parents, mentors, surrogates, and experiences.
Once I accepted that life might already have given me some of the skills that I would need, I could focus on doing my best under my particular circumstances. Here is what helped.
Remember that billions of others have done this before, probably in worse circumstances. Harness the power of realizing that you are not extraordinary. We are often reassured about our potential or told we can have it all. That if we think positively, good things will happen. This is not always good preparation for a resilient life or caregiving. Enter the caregiving role with humility and a sense of your limitations. This does not mean accepting these limitations — it means developing mechanisms to manage and overcome them. This might mean seeking out complementary life and professional partners.
A key connection is the medical one at a time when many representatives of the medical professional are overwhelmed. Despite it all, one of the doctors immediately gave me her cell phone and offered to come by any time to visit my ill elder. Knowing that I was not alone made all the difference in the world. Another kept on observing me and asking about my well-being — reminding me that I was at risk as a secondary patient and that I, too, mattered, not just as Erhard’s child.
Approach the situation like a professional. Treating others with respect and compassion in the process is key to its success.
- Do your research before you engage in difficult conversations, and come to family meetings with solutions and not just admonitions.
- Do not take things away, such as driving, without trying to propose alternatives, much as you would in a pitch at work.
- Consider who needs to be at the table for particular conversations, perhaps a friend or care manager.
- Try to really listen, validate and reflect and avoid “you” statements — “you need to eat more.” Instead reframe to an “I” statement — “I would love to get you your favorite meal tonight.”
Accept that it will be an emotional rollercoaster. Given the odds that caregiving will have an emotional impact on you and others at home and at work, read up on the risks. Think of your equivalent of the “twisties” — the feeling gymnasts have to be suddenly lost in the air mid-movement — and what to do when you feel lost or unmoored. Learn what emotions are and how and when you might be triggered. Emotions are data and should be seen as such — suppressing them can create other problems. Finally, such experiences are rare in our lifetimes and like rollercoasters can take courage, bring thrills, and provide new experiences.
Talk about it if you feel comfortable. If you are a manager, you may be tempted to hide your challenges or grief; you feel you need “to keep it together.” Given the data, the odds are that someone in your workgroup has experience with caregiving. If you have, share it with colleagues and managers. If the topic is discussable, others will come forward, hopefully to their supervisor, too, so they can come up with a plan to keep the caregiver productive and engaged. This could prevent departures or medical and mental health leaves for overwhelmed staff. And the stability, structure, and purpose of work can support caregiver mental health.
Resolve your conflict with your parents and loved ones before things get bad. My mother’s caregiver shared that the most conflicted familial caregivers were the most affected post-mortem. Try if you can to be complete with elders, in particular. Make sure that you have told them what you have to tell them, ask them what you want to know, and perhaps forgive them. Revisit assumptions about your childhood. And ask questions — I did but I have hundreds more now.
Focus on your primary relationship and ideally discuss these issues with your partner before they come up. If you intend to bring an elder parent home to live with you eventually, this is good to discuss with a potential life partner. When you select your home, will you have an in-law suite? Eschew stairs for barrier-free architecture?
Think of number one. In conversations with hospice and social workers or employers think about what YOU need, too, in addition to what your cared-for person needs. The emergency airplane oxygen mask analogy holds here. You can only be a supportive, centered caregiver if you are well physically, emotionally, and psychologically. Going for a walk with a friend is not abandoning your elder. It is investing in both of your well-being. Putting someone in an elderly home is not a betrayal if home care is not an option. For some of us, daycare was better than keeping a baby at home. It is the best you can do under the circumstances–and as yourself. Try to show self-compassion. And take care of yourself. You can defer maintenance, but if you do, you will need to get towed sooner or later.
Have a number two…and three. Some of us are lucky enough at work to have a boss, colleague, or report who comments on how we seem. Make sure to assign at least a non-family “number two” with the license to be honest with you, too. Have a person you can call to cry, vent, and share dark thoughts. Or to tell and hear a bad joke.
Understand what grief might feel like. The Kübler-Ross model describes some stages we might traverse when dealing with loss. But we might first experience anger, which we try to alleviate by lashing out at external forces: God, fate, the doctor who missed a diagnosis, the inlaws, and friends who gave “bad” advice. Then we wonder what we could have done differently. After this bargaining stage can come sadness and loneliness. We might experience signs of depression, such as sleep issues, substance use, or changes in eating habits. We struggle with the changes in family dynamics and identity attributes. Acceptance closes the cycle, allowing us to move forward. The sadness may linger, but it should no longer paralyze us. We should emerge transformed from the process, even if grief continues to circle, around and around.
Most of us do not experience all these phases; we come in and out of grief. Individuals who “oscillate” between distancing and immersing themselves in the loss do better than those who engage in prolonged periods of deep focus or try to avoid the pain completely.
Reflecting on the experience
Once the caregiving tour of duty is over, consider how to make it a constructive moment of renewal, which comes from a deep and honest process of self-reflection. You might ask:
What did I do well and why?
Who are all the extraordinary individuals, doctors, professional caregivers, and friends who helped me along the way?
What did I learn from them? Whom can I now support?
Who was I in that experience and did I gain and lose? How do I feel about it?
Do I still mourn this loss? And if so, how do I give voice to sorrow, for the grief that does not speak breaks us?
For my daughter and for me, the gift was immense:
I love having her live with us so much. I have learned a very valuable lesson when it comes to love. It is extremely, extremely powerful. Dada JP Vaswani, an indian guru, once said, “Greater than atomic power is the power of love.” My grandmother gets more awake, and more present when you hug or cuddle her. I once asked my grandmother if she knew who my mother was, and she said, “No, I don’t know who this woman is, or what her name is, but I know she’s the woman who loves me.”
Love is love, no matter what, and I now know, it can survive anything.
Please reach out to talk about experiences, past, present, and future. (https://www.linkedin.com/in/carinknoop/)
Unless otherwise indicated, most of the data comes from “Caregiving in the U.S. 2020,” AARP Public Policy Institute and the National Alliance for Caregiving, May 2020. This March 10, 2022 piece on supporting employees with caregiving responsibilities in SHRM is also very helpful.