Coping as a Caregiver

Reviewed by: HU Medical Review Board | Last review date: September 2017.

Caregivers are typically friends or family members who help a bladder cancer patient through treatment and beyond in a range of different ways.1-4

Roles of a caregiver

The role of the caregiver can shift over time, as the patient transitions from treatment and then into life as a bladder cancer survivor. When the patient is going through treatment, the caregiver may have wide range of roles, such as:

  • Helping the patient to understand the diagnosis and treatment options
  • Assisting the patient in making treatment decisions
  • Liaising with the patient’s cancer care team
  • Accompanying the patient at appointments
  • Helping with scheduling and maintaining the patient’s treatment plan
  • Dealing with transportation and accommodation issues for the patient during treatment
  • Helping the patient deal with day-to-day activities such as bathing, shopping, cooking, etc.
  • Communicating on behalf of the patient with other friends and family
  • Helping the patient to deal with side effects of cancer and its treatment
  • Providing emotional support to the patient

After the patient has completed treatment, the caregiver may be much less involved in day-to-day issues. However, the patient will now be adjusting to life as a bladder cancer survivor, which comes with its own set of physical and emotional challenges. The caregiver can still provide important practical, physical, and emotional support as the patient learns to navigate survivorship and find a “new normal.” Caregivers can provide helpful support to survivors, for example, in maintaining follow-up care after treatment. They can also help patients to manage the longer-term side effects of treatment as well as helping to monitor the patients for new symptoms or changes in the patient’s physical and emotional health.

Importance of self-care as a caregiver

Being a caregiver can be very rewarding, but it can also be very challenging.4 Many caregivers tend to neglect their own physical and emotional needs to focus exclusively on caring for the patient’s needs. Caregiving can be very stressful and emotionally difficult at times, which can have negative effects on the caregiver’s physical and emotional health. It is important for caregivers to take care of their own wellbeing by maintaining a healthy, balanced diet, keeping up to date with their own medical needs, getting enough sleep, and maintaining a physical exercise routine.

Many caregivers tend to take too much responsibility upon themselves, rather than asking for help. In many cases, friends and family may be willing to help out in a variety of ways, but they do not know how or are just waiting to be asked. To help reduce the burden, caregivers should consider reaching out to others for help with daily household tasks, errands, or other types of practical support.

It is important for caregivers to take time for themselves and to practice self-care, especially after the patient’s treatment period has ended. Caregivers should find ways to spend time taking part in activities they enjoy and connecting with friends and family, who can offer emotional support to the caregiver. Caregivers go through an adjustment period after a patient completes treatment, which can take a long time. Some caregivers experience feelings of stress, depression, and anxiety during this transition. Healthcare providers can provide resources for caregivers to find support. For example, there are online and in-person support groups where caregivers can connect with and support each other. Others may find it helpful to talk with a counselor individually to help cope with the transition.

Worries about the patient’s cancer returning

After a patient’s treatment has ended, it is common and quite natural for caregivers to be worried about the possibility that the patient’s cancer will recur.2 Recurrence means that the cancer starts growing again after the initial treatment is completed. These concerns usually tend to lessen a bit as time passes, but it is important for caregivers to find ways to cope with their fears in the meantime. Some caregivers find it helpful to speak with healthcare providers to learn more about the patient’s cancer and the possibility that it will recur. To feel more in control of the situation, some caregivers focus their energy on finding ways for themselves and the patient to stay as healthy and happy as possible. Others find it helpful to be open and honest about their emotions by talking about their fears with friends, family, support groups, or counselors.

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