Caregiver support
Caregiver support

Successful caregiving calls for more than just helping the person you’re caring for get to their doctor’s appointments or take their medication on time. Providing emotional support can be one of the most important responsibilities of a caregiver. During treatment, people with MCL or CLL may feel sad, angry, scared, anxious, or depressed. These feelings may stem from side effects of cancer or its treatment, fear of being alone, loss of independence, or thoughts of their own mortality, which is to be expected for people coping with a serious illness. Talking openly about these feelings with the person you care for may be difficult, and they may direct some of their feelings toward you. While it may feel upsetting or frustrating, keep in mind that this too is to be expected.

The tips below may help you provide emotional support.

  • Maintain daily routines whenever possible, which can help daily life feel as normal as possible.
  • Plan fun activities that both you and the person you care for enjoy doing together. Activities don’t need to be elaborate to be fun — staying home and listening to music, watching TV, or going shopping could all be an enjoyable change of pace.
  • Encourage the person you care for to open up about how they’re feeling by asking “what” they’re feeling (instead of “how” they’re feeling). Listen to them, remind them that what they’re feeling is okay, but you don’t have to make everything better. If they don’t want to talk about treatment or having cancer, that’s perfectly okay too.
  • Be open about your feelings too and don’t be afraid of doing so. Talk about your concerns, and keep in mind that you’re a team that’s in this together. You might find it helpful to have a specific person to talk to about how you are coping and managing. Caring for a carer is important as you are a vital member of the team. You might even find a support organisation, and find comfort in talking to people in a similar situation.
  • Respect your loved one’s right to make decisions about their own life, including if they decide not to discuss all parts of their condition with you. Sometimes your loved one may not want to talk about having cancer, and it’s important to recognise and respect that.

Caring for someone with MCL or CLL takes a number of people, all of whom are part of a treatment team. A treatment team may include:

  • Haematologists (doctors who treat blood cancers and blood disorders)
  • General Practitioner
  • Nurses
  • Pharmacist
  • Other specialists who can help keep things running smoothly
  • You (of course).

While you may not be the one treating the person you’re caring for, your role as a caregiver is essential to successful treatment and living with MCL or CLL. Beyond offering emotional support, the below tips can help you make the most of every doctor’s appointment.

  • Aim to go to all doctor’s appointments with the person you’re caring for. In addition to staying informed about treatment, you can help reach out to doctors if questions or concerns arise, and keep a record of what’s discussed during appointments
  • Make a list of questions for the doctor with the person you’re caring for before each appointment. This can help you get the most out of your visit
  • Let the doctor know you have questions at the beginning of the appointment. This can help the doctor set aside time to answer questions. Try to ask your most important questions first
  • Take notes, especially when the doctor answers your questions. If the doctor says something you or the person you’re caring for doesn’t understand, don’t hesitate to ask them to explain
  • Don’t hesitate to speak to the doctor if you have questions, concerns, or still don’t understand something after an appointment. They’ll be glad to help

RESOURCES

CALQUENCE® Caregiver Booklet for CLL Patients