Caring for a child, an aging relative, or a sick pet can be emotionally and physically demanding.

Because caregivers often overlook their own care while supporting and providing for others, self-care by the caregiver becomes crucial. To better understand the challenges that caregivers face, BeWell spoke with Phyllis Stewart Pires, director of WorkLife Strategy at Stanford.

Who is considered a caregiver?

A caregiver is anyone who is providing care and support to someone who is unable to care fully for themselves. Sometimes people assume they only qualify as a caregiver if the person for whom they are providing care lives with them full time. However, many people are providing care and support to people living at a great distance and sometimes the caregiving is more intermittent or comes in an intense short period. There are impacts to the caregiver no matter what the form or duration of the situation.

According to the U.S. Bureau of Labor Statistics, individuals who are between 45-64 years of age are most likely to provide caregiving, followed by those age 65 and over. We know that more than 60% of the Stanford workforce falls into these ages. But we also know that life circumstances often put people into the caregiving role no matter what their age. What’s interesting is that we are finding that even people who are clearly devoting large amounts of their time to the care of someone else often do not define themselves as a caregiver. Compounding this is the stigma often attached to caregiving, which frequently causes people to play down or even hide their responsibilities. This can mean that the appropriate level of “self-care” is not being put into place. The caregiver may struggle to maintain the often long-term, sustained commitment that is necessary.

How has being a caregiver impacted your life?

I have had both the privilege and the challenge of being a caregiver to my parents as they have aged and been faced with illness — while also raising three children of my own. And this has been along with the two challenging careers my husband and I maintain. I think one of the challenges I had early on was the realization that this journey was potentially going to stretch over many years and was going to require stamina and resilience. I had periods when I was literally trying to give 150% of myself and all that was left was a depleted and weary shell with very little patience. I also sometimes forgot that my various caregiving roles had impacts on one another. For example, the way I talked about my caregiving role for my own parents impacted how my children were able to form their own relationships with their grandparents. I also often found myself swept up into the “doing” and “fixing” of these situations and was not leaving time or energy to nurture the mutual relationships that were still important to me. And sometimes I just couldn’t resist putting on my “superhero cape” and convincing myself I didn’t need any help or support.

I am grateful for my own ability to recognize when I’m not showing up as my “best, most present self” and for family and friends who were very willing to share their concern for my own well-being. This guidance led me to identify and cultivate some important mind-set shifts, small incremental behavior changes, and time allocation practices that have helped me move through the most challenging of moments.

Why is self-care for caregivers typically overlooked?

Caregiving by its very nature is often described by society and honestly by us as needing to be completely “selfless.” I always think about that great analogy with the air masks on airplanes. They tell you to put your own mask on first for a reason! If you don’t ensure your own safety first, you won’t be much good to the people that will be counting on you for their very survival. And this act isn’t being “selfish” — it’s just being smart. I wish we could apply the same theory to caregiving more broadly.

What should caregivers be asking themselves?

Sometimes caregiving roles are thrust upon us in the heat of an emergency and sometimes we have months (or years) to prepare. But either way, the first steps are often very practical assessments of what exactly needs to be handled and then instituting a plan to execute. It is very unlikely that the issue of self-care will rise to the surface during this initial period of problem solving, but hopefully there is an opportunity for a pause during which the question of how one will maintain his/her own resilience can be addressed. When this pause happens, there are some questions that can help frame a self-care plan:

• Do I have a plan for developing the kind of relationship I want with this person/people even while serving in this caregiving role (e.g., while I care for my sibling who is battling cancer, how can I also nurture the brother/sister relationship)?
• What types of self-care “breaks” will I need to be present, patient, and caring for the long-term — and how do I actively schedule those in?
• From whom can I receive support throughout my caregiving journey?
• Have I identified coping mechanisms that work well for me? And do I know the signs which should prompt me to ask for assistance if my own coping mechanisms are not working?
• Have I considered the financial, emotional, career impacts of my caregiving relationship during a rational, calm moment and started to develop some plans? Have I identified one small step I should be taking to shore up these important anchors in my life?

What are the common concerns that are shared by caregivers within the Stanford community?

We hear some common themes from the many caregivers with whom we have contact across the Stanford community. People often experience feelings of powerlessness and uncertainty throughout various points in their caregiving journey. And this is true even if the caregiving is generally a joyful event — because even those times represent an upheaval to one’s routine and result in patterns that can throw us off balance. We also hear people describe worry and overwhelm as being almost a constant “buzz” as they attempt to go about their day. In these cases, I recommend that people try and develop the discipline of setting aside some “worry time” during which they allow themselves to focus on their concerns, but also give themselves permission to “store away” that worry and focus on other aspects of their lives for a period.

We also often hear people projecting forward and making assumptions of even greater worries and problems. This can contribute greatly to the creeping in of powerlessness. Maintaining focus on the immediate issue that needs to be addressed rather than weaving a story based on unknowns can help bring us back into balance.

It is often true that certain caregiving situations will require adjustments in how we are handling work and life responsibilities. We hear lots of worry about the “what ifs.” Before assuming that some giant change (e.g., quitting one’s job) will be the only logical outcome, it is important to break down the true degree of “need” on the part of you as the caregiver. Do you need time to go and check in on someone periodically? Do you need an hour a week to make phone calls to line up services that will prevent a later catastrophe? Once you’ve identified the need, creating a plan for an open and honest discussion with your manager can often be a key to recognizing the true limitations or opportunities that will be available to someone dealing with a caregiving situation. In any proposal that you make that asks for additional flexibility, address how you will continue to meet the primary demands of your role, how you will stay available to your team (or what boundaries you will need), and welcome periodic check-ins on any flexible arrangement that is agreed upon.

Finally, we hear many caregivers express a great degree of isolation. And, of course, this is ironic — as often caregiving involves you being “with” someone a great deal. But people don’t feel that they have others with whom they can share their honest frustrations — often worrying they will be seen as ungrateful or downright selfish. Our caregiving seminars and support groups often enable people to find “kindred spirits” who are willing to listen without judgment. If you don’t have a place or person to find this support, it’s worth the investment of time.

How can employers’ best support employees with caregiving responsibilities?

In my experience, employers are often very good at responding to short-term, emergency caregiving situations with flexibility and support. Where things can get more challenging is if the caregiving role is seen as stretching beyond these short-term situations. And if these are not addressed with open and compassionate conversation, the frustrations can build on both sides of the relationship — and all too often a knee-jerk reaction can result.

I encourage managers to spend the time to create relationships with your employees that will enable someone to feel comfortable sharing caregiving situations that are impacting them. This can be done without being intrusive and should never feel like one is “digging” for information. Create the opening and then be a good listener when they show up. Be attentive to how other managers you respect have handled difficult caregiving situations and ask them questions about how they specifically came to the particular arrangements you’ve observed. Inquire about the specific pros and cons and then try and consider how those would play out in your own work environment. Be willing to think creatively with your employees when they face difficult caregiving situations. Often, we unnecessarily assume that a big adjustment will be needed or requested, when even small and sometimes temporary arrangements can go a long way in helping to bridge an employee over a tough time.

What strategies have you found helpful as a caregiver?

I encourage anyone with caregiving responsibilities to think through what they will need. In my own life, I have tried to build myself a toolbox of strategies that are specific to my situation:

• Become informed: Educate yourself on the specific needs of your loved one and their situation. Don’t be afraid to ask questions of any professionals with whom they are engaged.
• Simplify: Simplification can help you conserve your energy, which can be limited as a caregiver. Prioritize and delegate as needed.
• Actively seek out support: Maintain social connections with friends and family.
• Build good memories: You’ll need some good ones to recall when the going gets tough.
• Get rest: Give yourself time to relax and recoup.
• Be kind to yourself:  You won’t meet everyone’s needs all the time!

Final thoughts?

Even with the best support systems in place, caregiving can be challenging to navigate. Stanford’s WorkLife Office is interested in exploring ways to better support the needs of caregivers across Stanford.

The WorkLife Office is seeking participants for opportunities that focus on caregiver self-care and addressing the needs of caregivers throughout their caregiving journey. Caregivers interested in participating in such opportunities are encouraged to complete this short survey.

Phyllis Stewart Pires designs and manages programs and services that support the Stanford community. The WorkLife Office helps faculty, staff, postdocs, students and retirees navigate the competing demands of work, study, personal, and family lives.