End of the Caregiver Role

During cancer treatment, you played an important role in supporting your loved one. You may have provided physical, emotional, and practical care on a daily basis for a long period of time. At some point, the need for the type of care you gave will come to an end.

• If your loved one may successfully completes treatment, you may find it difficult to stop being a caregiver to the patient. You will both be transitioning back into your normal roles.
• If your loved one has advanced cancer and chooses not to continue treatment, you will need to consider hospice or end-of-life care.
• If your loved one passes away, you will need time to mourn. 

Transitioning out of the caregiver role and into survivorship 

Once treatment is completed, your loved one may still need your help for some time as he or she recovers from treatment. Transitioning out of the caregiver role can be a gradual process. Talk to your loved one about what he or she needs and how you can help. If your loved one is able to take on a more independent role, be supportive and allow him or her to do so. Keep the lines of communication open.

Many people refer to the time after cancer treatment as the “new normal.” For patients and caregivers, it may not be possible for life to return to exactly the way it was before cancer. Be careful to manage your expectations. It may not be possible, for practical reasons, to resume the schedule or lifestyle you lived before your loved one was diagnosed with cancer

After cancer treatment ends, you most likely will not be providing the same level of care, but there are still things you can do to support your loved one during survivorship. For example, you can 

• Learn about the possible late side effects that may follow the patient’s treatment. Keep an eye out for them.
• Go with your loved one to follow-up appointments and scans.
• Help your loved one to collect medical records as he or she transitions back to a primary care doctor instead of an oncology healthcare team.
• Be there for your loved one to offer emotional support.
• Work with members of the healthcare team and your loved one to create a survivorship care plan. The plan includes
  • A summary of diagnosis and treatment
  • The responsibilities of all members of the healthcare team
  • A plan for follow-up care, a screening/testing schedule, and side-effect management.

Survivorship can be a difficult time, too. Treatment offers a clear goal and an end date. Without some sort of structure like this, you and your loved one may feel lost. As you transition out of the caregiver role and your loved one transitions to survivorship, take things one day at a time.

End-of-life care and hospice care

Choosing to stop treatment

At some point during the cancer journey, you and your loved one may need to consider stopping treatment. This can be a difficult choice to make. Further, a decision to stop treatment is likely to bring up strong feelings for everyone involved. Ultimately, your loved one’s decision is a personal one. Deciding to stop treatment is not “giving up.”  As the caregiver, at a time like this, you may need to remind other family members and friends who may disagree with the decision that their loved one’s wishes must be respected.

Hospice

Hospice delivers compassionate care to people who are approaching the end of their lives and provides emotional and physical support to them and their loved ones. Most hospice programs enable the patient to stay at home. However, some are freestanding centers that are affiliated with hospitals or nursing homes. The hospice team is usually comprised of hospice doctors; nurses; social workers; home health aides; volunteers; and chaplains and other pastoral counselors.

If your loved one receives in-home hospice care, as the caregiver, you will still be providing care for your loved one, but alongside and with the members of the hospice team. A healthcare professional will not be present at all times, but a nurse will visit on a regular schedule. The hospice team will teach you how to

• Administer medications
• Care for an intravenous (IV), central line, percutaneously inserted central venous catheter (PICC) or port
• Use any necessary medical devices or equipment
• Provide nutrition
• Make your loved one comfortable.
• Assist with bathing and skin and mouth care.

You may also want to discuss hospice with the healthcare team if your loved one is making many trips to the emergency room but would be prefer to be at home, or if you, as the caregiver, can no longer meet the demands of your loved one’s daily, ongoing medical or care needs.

During the end of life, your loved one should not be left alone. Work with family, friends and the hospice team to coordinate round-the-clock care.

Bereavement

Everyone expresses grief in his or her own way. Although grief is not bound by time, the intensity of normal grief does heal over time as the bereaved person adjusts to the loss of his or her loved one. Grief can affect people emotionally, physically, cognitively and behaviorally.

• Emotional effects include feelings of sadness, anger, guilt, self-reproach, anxiety, loneliness, fatigue, helplessness, shock, yearning, emancipation, relief, numbness
• Physical effects include the sensations of hollowness of the stomach, tightness of the chest, tightness of the throat, oversensitivity to noise, sense of depersonalization, breathlessness and shortness of breath, weakness of the muscles, lack of energy, dry mouth
• Cognitive effects encompass disbelief, confusion, preoccupation, a sense of presence, hallucinations, lack of focus
• Behavioral effects manifest as sleep disturbances, appetite disturbances, absent-mindedness, social withdrawal, dreams about deceased loved ones, searching and calling out, sighing, restlessness, crying, visiting places or carrying objects, treasuring objects.

Many people express grief in a outward way; for example, crying, a lack of energy or trouble sleeping. Others, on the surface, may not seem to be grieving. Instead, these people process grief internally. Their grief may go unrecognized and unacknowledged. Be aware that grief is personal and specific to the person. Try not to make judgments about how you (or others) process the loss of your loved one. The manner and 
timing of your approach to your loss and how you work through your grief depends on you as an individual.