The Experience of Caring for Someone With Cancer

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Your Changing Responsibilities

Caregivers often have to take on unfamiliar tasks and absorb new knowledge. Among the experiences you may encounter:

Medical

  • Navigating the health care system: appointments, transportation, and who to call with questions.
  • Carrying out practical medical tasks with little experience or training.
    Read the booklet Taking an Active Role

Life Balance

Financial

  • Managing the additional expenses of caregiving like costs for meals, parking, child care, paying medical and hospital bills.
  • Knowing who to call with financial questions.
    See websites that offer practical advice

Your Relationship May Change

In every relationship, familiar roles and responsibilities change over time. But when illness strikes, the change may be sudden. The situation may be temporary and last only for the duration of the illness. But when caring is extended, there can be a shift in the relationship between caregiver and patient.

  • New responsibilities can cause tension and strain.
  • It's hard to always remain calm and have patience.
  • The patient who is used to being independent may struggle with needing to rely on the caregiver.

Communication May Change

Many people take for granted their ability to communicate with loved ones. At times of critical junctures in care, it's hard to talk openly with the patient and with family members about topics such as treatment decisions, transitions in care, next steps, end-of-life care, and planning for survivors after death.

It can also be challenging to know how best to communicate with the patient's medical team. Some caregivers are afraid of asking what they most need to know. Some caregivers and patients have differing needs for information. This may be hard to negotiate.

Many caregivers have said they've found it difficult to talk openly about their concerns, especially when they never had to speak in these ways before.

Read the booklet Taking an Active Role

My husband didn't ask a lot of questions. He followed what his doctor said. I'm the opposite (I ask a lot of questions) and I felt that put me in an adversarial position with my husband. We negotiated a bit, but in the end I told myself that he's the patient.
— Ilene, caregiver to husband with lymphoma