Helping Caregivers Care for Themselves

It can be helpful for caregivers to acknowledge the positive aspects of their role.

It can be helpful for caregivers to acknowledge the positive aspects of their role.

In the overwhelming whirlwind of appointments, tests, and decisions surrounding a loved one’s cancer diagnosis and treatment, caregivers can lose track of themselves and their own needs. “Caregivers can feel invisible,” says Memorial Sloan Kettering clinical social worker Annamma Abraham Kaba, co-coordinator of the Department of Social Work’s Caregiver Program. “And yet they’re increasingly the bedrock of the healthcare system.”

“Caregivers are valuable to our culture and to our institution,” says clinical social worker Linda Mathew, co-coordinator of the Caregiver Program. “As providers, we want to empower, support, and underscore to caregivers their value and recognize how important they are to patient care.”

Ms. Abraham Kaba and Ms. Mathew recommend the strategies below to help you cope with some of the pressures of caregiving.

Accept help.

VIDEO | 00:30
Social worker Chris Anrig shares ways to support a friend or loved one with cancer.
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 The stress that comes with caregiving is unavoidable. Recognizing you need a hand is a crucial first step — and so is giving yourself permission to take it. “Obviously, caregivers are busy helping their loved one,” says Ms. Abraham Kaba. “They’re really motivated and committed. However, they can experience roadblocks to their own self-care. Lack of time, resources, and sometimes guilt about relying on others can sideline caregivers’ ability to take time for themselves.”

It’s important to acknowledge that sense of guilt and to not feel judged about having needs.  “Accepting help is not a sign of personal failure,” she says. “If you have family members and neighbors saying they want to help and asking how to do it, take them up on their offer. Discuss with them ways they can support both you and the patient.”

Start by identifying what it is that overwhelms you the most.  “Do you just want to talk to someone, or are you burned out? Do you need someone to help you with the children?  It can encompass things from the very practical to the very emotional,” says Ms. Abraham Kaba.

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Create boundaries.

The sheer volume of information to absorb and choices to make can leave caregivers feeling as if everything is spinning out of control, especially if they have been caregiving for some time. It’s important to recognize your limits, whether by setting aside time to focus on your loved one or taking a break to understand why you’re feeling overwhelmed.  It could be as simple as scheduling appointments at times that fit into your work schedule, rather than accommodating whatever options you’re given.

“It’s about setting boundaries, which can be hard to do,” says Ms. Abraham Kaba. “It’s saying to yourself that you’re allowed to have limits.”  

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Seek support from fellow caregivers.

Talking with others who can relate to your situation can be a huge help. Attending in-person or virtual support groups gives caregivers a voice: “It’s a place where they can share what they need to share without feeling judged,” Ms. Mathew says.

At Memorial Sloan Kettering, participating in a caregiver support group couldn’t be simpler. “We have folks plugging in from their car on their lunch hour,” says Ms. Abraham Kaba. (To register for a virtual group, send an email to [email protected])

Topics discussed cover everything from the isolation and guilt of caregiving to the role reversals that can occur, like when a child is caring for a parent. Other caregivers understand that there are so many emotions wrapped up in caregiving — including good ones. These groups are also a good forum for difficult or complex discussions about things like financial struggles, existential issues, and finding meaning.  “Participants talk about the real stuff,” says Ms. Mathew. “When they’re able to talk about it with the other caregivers, it’s not as scary.”

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Have the difficult conversations.

Once you’ve gotten that support from other caregivers, try to have those serious talks with your loved one, if he or she is open to it. “Initiate the conversation about the patient’s ideas on quality of life, DNR orders, or how to communicate with your children about the progression of the disease,” says Ms. Mathews.

If your loved one is facing a metastatic diagnosis or is at an end-of-life stage of the illness — and is comfortable addressing it — discussing final wishes can help relieve anxiety for everyone. “It’s OK to have that conversation,” says Ms. Abraham Kaba. “You’re not causing your relative undue stress. He or she is already thinking about it, too.”

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Try to create moments of connection and pleasure.

“As important as those heavy discussions are, it’s also good to acknowledge the positive aspects of caregiving, such as the deepening of your relationship with the patient, the strength you gain through adversity, and your own personal growth,” says Ms. Mathew.

Finally, be aware of your thoughts, which can distract you from the present. “I call it chatter,” says Ms. Abraham Kaba. “Be mindful of the thousand thoughts that are running through your head, because they can rob you from the experience of right now.”

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it is very informative

Does Sloan Kettering have massage therapists in the facility that could go to a room and give my sister a massage? I am happy to pay for that. She is by the side of her beloved spouse day and night, and is exhausted. I think a chair massage in the room would do so much.

Dear Saphronia, thanks very much for your question. We do have massage therapists whose services are open to caregivers and the general public for a fee. And we’re looking into whether they could provide those services in-room. If you would like to make an appointment for your sister with a massage therapist at out Bendheim Integrative Medicine Center, located several blocks north of the hospital, the number there is 646-888-0800. They are closed today, but will be open tomorrow (Monday) morning.

Dear Saphronia, just to follow up with you regarding your question about in-room massages for caregivers. It’s a wonderful idea, but at this time our therapists are focused on meeting the needs of patients. Again, you are welcome to make an appointment for your sister at our Bendheim Integrative Medicine Center, or the staff there recommended some of these at-home relaxations tools she could listen to if she has a mobile device with her:…. Thank you again for reaching out.

My mom is being treated locally on Eastern Long Island. I live in Jersey City and would like to know if I can participate in the virtual support groups offered.

Dear Jeanette, unfortunately, our virtual support groups for caregivers are only open to those caring for loved ones being treated at MSK. However, we do have some good resource information for caregivers on our website that may be of interest:

We also have a clinical trial open looking at web-based support for caregivers of patients being treated at any hospital:

Finally, you may be interested in joining Connections, our online community for patients and caregivers, to share experiences and information with others who may be in similar situations. To learn more and register, go to…

We hope this is helpful and wish you mom our best as she continues with her treatment.

Going through rough time,taking care of two terminally ill,daughter 19.and my brother, as a Registered nurse Does not matter,people forget I am a mom first,I am a Sister, it's not easy ,nothing worse then a broken spirit,so think it's been through my faith and Gods grace that I have mananger,took care of my husband here at home died in 2015 LOU Gerigs Disease ,ALS,then daughter gets diagnosised with terminal cancer,no treatment,no cure,What I thought to myself ,I wrote st Jude,Sloan Kettering No research studies for her type of cancer,but I cry in silence for them I smile,the same way I do with my patients,I donot allow us myself to think negative,I stay away from negative people,I work in the Emergency room ,the ICU ,CCU and Cardiac Recovery,I have volenteered with Hospice since I was in College,but I realize now I am Tired,I get off work ,I don't want to go home,I go sit in the Park,sometimes I cry,but I wash my Face and go home with a Smile,I must be be strong for them,I but it's getting harder,I work where I see people dying,I go home people are dying,I know dying is a part of life,but I think I am getting overwhelmed,people at my church avoid me because they said they don't know what to say .not good I am starting to feel sad to much,I don't need medication sometimes I just want to talk,my mom lives with me now ,healthy as can be,a retired RN that Ran the AIDS unit at the Veterans hospital,but mom was diagnosed with Alzheimer's,she is strong spiritually,said she's going down fighting,takes no medication,just had her physical her labs,perfect not one red mark,she does 100 puzzles a day,walks 1mile each day with me,it hurts me to watch my mom whom was so independent ,forget Tell me thanks Robin before letting me live with you,it's okay I love my mom,but everyone I love I am losing them ,it's to much now,mom was adopted no big family ,no real support systems, but it's okay,my children are there but I put on the smiley face ,I try to be strong nut now I feel sad ,

Dear Robin, we’re very sorry to hear that you’re going through all of this. You clearly have a lot going on in your life, but it’s important that you take care of yourself as well as your loved ones and patients. We recommend that you find out whether the hospital where you work has an Employee Assistance Program or some other service that could help you get some counseling to deal with what you’re going through. You may also find it helpful to join MSK’s online support group, called Connections. You can learn more about it here:…

Thank you for taking the time to share your experiences, and best wishes to you and your family.