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For caregivers

Caregivers are an important part of a patient's experience with cancer and treatment. As a caregiver, you’ll take on additional responsibilities, but there is support available.

Keep in mind that caregiving duties can be shared with others, such as family members, friends, or hired care workers.

Illustration of caregiver planning appointments on laptop and phone.
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What can I do as a caregiver? Where can I find support as a caregiver?

What can I do as a caregiver?

A key role for caregivers is to watch out for side effects after the CAR T infusion, especially in between check-ins with the healthcare team. Some side effects may be hard for patients to recognize, and they will need a caregiver after their CAR T infusion. Your CAR T treatment team will give you detailed instructions on what to look for and what to do.

There are other possible caregiving duties, since CAR T patients often deal with fatigue. Patients should avoid driving for 2 weeks after their CAR T infusion, and some patients may require personal supportive care. Your CAR T treatment team will tell you more about what to expect and how you can help.

When preparing for CAR T, you can:

  • plan ahead to ensure that you or other caregivers are available at the times when the patient needs someone
  • ask or learn more about CAR T
  • help get a referral to a medical center that offers CAR T
  • organize travel, meals, and a place to stay near the CAR T medical center (if you and the patient don't live nearby)
  • coordinate with the CAR T treatment team to schedule appointments and tests
  • help gather information needed by the CAR T medical center
  • line up support for CAR T (such as financial support if needed)
  • make a plan to have someone support you if there is any help that you need
Illustration of person on phone to discuss planning for CAR T.

After the CAR T infusion, you can:

  • stay with the patient near a healthcare facility for at least 2 weeks
  • watch out for symptoms of CAR T side effects—some side effects may be hard for the patient themselves to notice, and patients will need to be accompanied for a period of time
  • continue helping the patient while their energy is low
  • help with day-to-day tasks as needed (e.g., grocery shopping, preparing meals, tidying up)
  • drive or arrange transportation—the patient should avoid driving for 2 weeks after their CAR T infusion
Illustration of caregiver supporting a patient after CAR T treatment.

Caregiver stories: My CAR T experience

“I would say the most important part of caregiving is listening and supporting the person that you’re taking care of.”

- Melissa, CAR T caregiver

Watch Read
[Tap to play] Thumbnail for a video titled: Caregiver stories: My CAR T experience.

Caregiver stories: My CAR T experience

Ed, CAR T caregiver
Susan, CAR T caregiver
Melissa, CAR T caregiver

Ed: I think being a caregiver, when you're confronted with something like this, it becomes extremely important. It's a role that I never wanted to take on. I don't think I ever envisioned having to take it on, but it's one that I accepted and I embraced. And I think if you love someone, you're going to care for them. I think that the definition or what you mean by caregiver, when somebody's dealing with an illness like this, drastically changes.

Susan: I remember sitting in a hospital, my family with me, and hearing the diagnosis for the first time. It was a lot to take in at the time and I felt I needed to be strong for everybody else.

Melissa: After my husband's diagnosis, I just sprung into action. I would say the most important part of caregiving is listening and supporting the person that you're taking care of. Make sure that they stay positive and look forward.

Susan: A caregiver does have to be strong and you do have to be selfless, right? The patient always comes first.

Ed: I wouldn't wish it on my worst enemy, to be put in this position, but I love my wife, so it was just something I was able to do. It's important to remain hopeful and appropriately optimistic.

Melissa: For me, it was just staying positive and just talking with friends, and constant communication between the two of us. We've been together for 33 years, and I can't imagine my life without him.

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What other common responsibilities are there?

You can also help with:

  • day-to-day household tasks (groceries, cooking, cleaning, paying bills)
  • personal care or hygiene if needed
  • medication management
  • asking questions and taking notes at appointments
  • speaking up and getting the best care for the patient
  • getting a second opinion
  • helping to communicate with the healthcare team during any part of the process
Where can I learn more about CAR T caregiving?

You can share caregiving responsibilities with others—you don’t have to do it by yourself.

What questions might I ask the CAR T treatment team?

  • What responsibilities would I have as a CAR T caregiver?
  • How might the caregiver role change throughout the CAR T treatment process?
  • How much time should I plan to be at or near the CAR T medical center, and when?
  • Can I take a break from caregiving while the patient is at the CAR T medical center?

Where can I find support as a caregiver?

Remember to take care of yourself, too. This may include taking time to rest and de-stress, doing things that make you happy, keeping up with your own health, and finding the support you need.

Caregiver stories: Taking care of yourself

“As a caregiver, probably one of the most challenging things to realize or be mindful of is that you have to take care of yourself.”

- Ed, CAR T caregiver

Watch Read
[Tap to play] Thumbnail for a video titled: Caregiver stories: Taking care of yourself.

Caregiver stories: Taking care of yourself

Ed, CAR T caregiver
Susan, CAR T caregiver
Melissa, CAR T caregiver

Ed: You know, as a caregiver, probably one of the most challenging things to realize or be mindful of is that you have to take care of yourself. Because if you're not taking care of yourself, and you're not healthy first, then you can't be healthy for others. For me, I was very intentional and very cognizant about trying to find ways to either recharge or just appropriately disconnect.

Susan: Being a caregiver is lonely, and so you have to get used to loneliness. You have to get used to doing roles that you don’t normally do. You have to be a nurse sometimes. You have to be a chef sometimes. It's a lot of different things, and so you have to make some time for yourself.

Melissa: If you don't take the time for yourself, you can't give the time to somebody else because you're not in the right frame of mind, so you need those breaks. I think the best thing that you can do for yourself, to take a break from being a caregiver, is doing some of the things that you enjoy. For me, it was working out, a little bit of meditating, hanging out with friends.

Ed: I was present for Ann, I was healthy for Ann. I was in the moment and I tried to identify ways to recognize when I needed some type of either distraction or an outlet. I joined one of those high-intensity type of classes. When you walk out of there, you're exhausted, you're sweating, you're burning a lot of calories. I just… I let it get out.

Susan: When I'm able to give myself a break, I read, I watch TV, I keep my mind busy. Sleep is not always readily available, because sometimes they wake up in the middle of the night and that's interrupted. But sleep, just so that you have all the patience you need to deal with your loved one, is really important.

Melissa: I think taking time for yourself makes you a better caregiver because you avoid that burnout, and it keeps your mind positive. So when we get together as a family, we like to play games, watch movies, do puzzles, and just sit around and talk, catch up. That time is everything for me.

There is support available for caregivers, such as:

Resources may include referrals to independent third-party nonprofit patient assistance programs. These programs are not operated or controlled by Kite and Kite does not endorse any program or third-party organization. Nonprofit patient assistance program eligibility requirements may vary and are established solely by each independent organization. Kite makes no guarantee with respect to reimbursement or copay assistance for any item or service.

Next steps

Illustration of patient and caregiver discussing CAR T with an oncologist.

Ask a healthcare provider to learn more about CAR T
Illustration of two people walking from a CAR T medical center.

Find a medical center
that offers CAR T
Illustration of patient and their support circle.

Find support
for CAR T