Founder of Memorial Sloan Kettering’s Caregiver Clinic Shares Helpful Ways Caregivers Can Take Control of their Wellbeing

If you’re a family caregiver or have been in the past, at some point someone likened your experience to the public service announcement on airplanes about putting on your oxygen mask. And if you’re like me and many of my patients, in that moment, being told to do so may have felt invalidating! For most caregivers, it is nearly impossible to put on that proverbial oxygen mask when you are in a crisis or navigating a heaping pile of caregiving responsibilities that demand your immediate attention. Even when a crisis has passed and you have more time and space, you may still feel like you have little to no control over the life you are currently living. You may feel like the goals you set for yourself a year (or two or three or four) ago got pushed to the wayside when you became a caregiver, and that your own goals or desires simply don’t matter as much now. You likely feel anger, frustration, and jealousy when you scroll through social media and see your friends and acquaintances living life freely while you feel like your own life and goals have been put on hold. And when you do get to take a breather, you might even find it overwhelming to begin to think about how to take care of yourself, after so much of your life and energy has orbited around caring for someone else. 

The caregiving role is one of incredible limitations and losses. I have yet to meet a caregiver – myself very much included – who has not sacrificed significant parts of themselves in service of the care of another. For many caregivers, planning for the next day or week, let alone month or year, can feel impossible given the uncertainty of a care partner’s illness or treatment. Not knowing whether a medical treatment will work leads to uncertainty. Not knowing when your care partner is going to get sick from side effects of treatment leads to uncertainty. Not knowing if anything related to your care partner’s care and well-being will impact your ability to accomplish your daily and lifelong to-do lists leads to uncertainty.  

Despite these challenges, despite this profound uncertainty, there are ways in which you can take control of your caregiving-shaped life. The following tips will help you to do just that. While none of these will compensate for the profound ways in which your life has been challenged by caregiving, they can help you to feel more in control and more empowered as a caregiver and mitigate some of the distress you are likely experiencing. 

EIGHT TIPS TO HELP CAREGIVERS TAKE CARE OF THEMSELVES

1.     Breathe. The simplest and most powerful stress management technique for caregivers is diaphragmatic breathing. When the stress of caregiving becomes intense, take a deep breath in through you nose, hold for a few seconds, and then exhale slowly through your mouth. Just one minute of diaphragmatic breathing can lower your stress hormone cortisol and help you to cope with whatever caregiving-related challenges are in front of you.

2.     Set SMART self-care goals. When you think about setting self-care goals, set SMART goals, that is, goals that are Specific, Measurable, Attainable, Realistic, and Timebound. While it is likely unrealistic that you will be able to get to the gym five days a week while you’re in the thick of caregiving, setting a goal to go to the gym for one hour weekly might be more feasible and leave you with a feeling of accomplishment, instead of shame. 

3.     Protect your energy. Self-care for caregivers means doing anything that preserves your energy, including your emotional energy. This means that your greatest act of self-care may include cutting ties with or creating space from individuals who drain your energy. Remember, there’s only so much of you to go around!

4.     Make friends with guilt.  Caregivers frequently feel guilty for taking time for themselves, for stepping away – even momentarily – from caregiving responsibilities. This feeling is often accompanied by thoughts that start with “I would/should/could” and adds further burden to caregivers’ emotion-filled plates. When caregivers feel guilt, they often feel like they are letting someone else down, but the reality is a little different: Guilt is a sign that the person they are most likely letting down is themselves. The next time you feel guilt, take a moment and think about what need of yours has been falling by the wayside, instead of everyone else’s. Guilt is an important messenger, and you should allow it to be your powerful motivator for improved self-care. 

5.     Ask for help... Asking for help can feel uncomfortable, and that is because it’s not something that we’re often taught to do. You might worry that reaching out for support will make you seem incapable of juggling the many responsibilities on your plate, or that asking for help is a sign of weakness or an admission of failure. But when it comes to caregiving, it is essential to reframe asking for help as an incredibly courageous act – which it is! Truly, it is one of the most important things you can do to get your needs met while you’re a caregiver—this is how you find your voice and take control when your responsibilities become overwhelming! 

6.     …and delegate. When offers of support from family, friends, colleagues, or acquaintances come your way, I not only want you to say yes immediately but I want you to specify what they can assist with, such as setting up a meal train or managing home repairs. Crossing one or two of these tasks off your list can make a significant difference for you in terms of your energy and bandwidth for assisting with more hands-on caregiving. It can be helpful to make a list of tasks that you need or want to hand-off at some point so that you are ready when the question comes. 

7.     Have the tough conversations. Discussing your care partner’s goals of care – what matters to them in terms of the care they receive now and in the future – can be really scary. While opening these discussions can be overwhelming, once you do, you will take an exhale. As a caregiver, you are increasingly relied on to manage a range of demanding responsibilities in decision-making, and having had these conversations, you will feel more confident to carry out your care partner’s goals of care in the future. Although challenging, these conversations are important opportunities to connect more deeply with your care partner and when engaged with courage and vulnerability, can allow you to feel more in control of your caregiving journey.

8.     Reconnect to what makes you, You. Being pulled in a million directions and not having time for yourself can leave you feeling like you have lost touch with your old self or have been replaced by a new person. Many caregivers feel like they don’t recognize themselves and who they have become because of caregiving. If this sounds familiar, take a moment and consider what makes you authentically yourself. Has caregiving changed that authentic sense of self in any way? If there are certain valued activities or roles you have given up because of caregiving, think flexibly about how you might reconnect to them, even in a small way. For example, perhaps you can no longer take week-long or even weekend getaways to go hiking, but you can take a few hours and walk through the local park to connect to nature. Remaining connected to your authentic sense of self—even if you maintain those connections in ways that are a little new or different—is one of the most important things you can do to honor and preserve yourself while taking care of someone else. 

Allison Applebaum, PhD, is the author of the forthcoming book from Simon Element, an imprint of Simon & Schuster, Stand By Me: A Guide to Navigating Modern, Meaningful Caregiving and director of the Caregivers Clinic at Memorial Sloan Kettering Cancer Center.