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How to say goodbye when a loved one says it’s time.
Herb Grey lived with prostate cancer for 19 years. It was treated with cryosurgery, intermittent secondary hormone therapy and chemotherapy, but the disease progressed and, in 2008, he and his doctor decided to end treatment. He died two months later.
“It was a tough haul,” says Shirley Grey, of Northbrook, Ill., who served as her husband’s caregiver throughout his cancer experience. She says quality of life in the last few months was hard for her husband, but she didn’t try to change his mind. “It was his journey to make. But, for me, it was emotionally difficult.”
The decision to stop active cancer treatment can be grueling for both the patient and the caregiver—especially when the patient’s effort to survive has been long and arduous. According to counselors and other experts, it is common for family caregivers to experience a range of emotions from the time the decision is made until the patient dies. They emphasize, however, that there are effective steps caregivers can take to help themselves cope.
“Feelings of guilt, anger, fear and sadness are all very common among caregivers as they try to care for their loved ones,” says Margaret Bevans, PhD, RN, a clinical nurse scientist at the National Institutes of Health (NIH) Clinical Center in Bethesda, Md. “They also often use the word worry: They are worried or uncertain about things to come. And that can create additional emotional responses, such as anxiety and even depression.”
Bevans says “there is a gradual evolution of emotions for caregivers when a loved one is on the trajectory of a cancer illness because there are so many different forks in the road.
“If the patient has a terminal form of cancer and is making decisions about the end of life, the emotions the caregiver felt earlier may be intensified,” she adds. “There may also be some new emotions, and other things they start worrying about because there is no expectation for hope.”
Yet hope can change over time, says Tani Bahti, a registered nurse who is certified in thanatology, the study of death and dying, and in hospice and palliative care nursing. “It transforms from hope for a cure or remission to hope for a comfortable death and healing closure.”
[Read "What is a Good Death?"]
If the patient has a terminal form of cancer and is making decisions about the end of life, the emotions the caregiver felt earlier may be intensified.
Caregivers can come to terms with a loved one’s decision to stop active treatment by participating in that decision, Bevans advises.
“It’s really important that family members be a part of those discussions from the very beginning, so they have time to understand their emotions,” she says. “Being a family-centered process and not a patient-centered process is really essential.”
Dying is a natural part of the life cycle and should be talked about so that it can be prepared for with the same respectful attention, knowledge and caring as other rites of passage, says Bahti, who serves as executive director of Passages, a Tuscon-based organization that offers guidance in end-of-life issues. Although talking about death can be difficult, not talking about it can be worse, she adds.
[Read "Myths About the Dying Process"]
When Grey’s husband announced his decision to stop treatment, she suggested he create a bucket list, and they set out to do as much as they could with the time he had left. “The thought in my mind was that this was his journey; I was there to facilitate his choices,” Grey explains. “I felt if I could do that for him, then that was my job.”
Reaching out to others can also help caregivers come to terms with their loved one’s terminal illness. Many caregivers benefit from professional counseling or advice from a spiritual leader if they feel they need it.
“This is an individual decision, but if a faith community brings them support in their daily life, then absolutely this is a time when they should reach out for that support,” Bevans says. “People need to reflect on what works best for them.”
It’s common for caregivers to put their own health and well-being on hold as they strive to make their loved ones’ final days comfortable. However, this attitude does a disservice to everyone involved. A recent study published in the Journal of Clinical Oncology found that patients with cancer experienced a decrease in symptoms and an improvement in physical and mental health when caregivers took time to take care of themselves.
The NIH Clinical Center recommends a caregiver approach called REST, which stands for:
Relax. Caregivers should take time to separate themselves from the chaos around them so they can become rejuvenated inside and out.
Eat healthy and stay active. “Caregivers work so hard to help their patients ingest appropriate foods that they sometimes forget to cook for themselves and start eating unhealthy foods,” Bevans says.
Sleep. Caregivers should develop a routine that permits restful sleep, and try not to get up and down any more than they have to.
Take good care of oneself. Caregivers should remember to take their medications, go to their own medical appointments and reach out for respite with family and friends so they can have a little time to themselves.
Caregivers often find solace in giving their loved ones permission to die. “I encourage families who I see holding on to find their own way of releasing and to know that each person has their own timing to letting go,” Bahti says. “It’s never a good time for someone you love to die, so it may never be possible for some family members to say, ‘It’s OK for you to go now.’”
She recommends caregivers tell favorite stories about the patient as a way of acknowledging the patient’s role in the caregiver’s life.
“It also helps patients to know how they will be remembered,” Bahti adds. “This is a gentle form of ‘letting go.’”
“Letting go can have a therapeutic effect,” Bevans says. “It is essential that the caregiver engage in a conversation with their loved ones about their decision to stop treatment.”
This is something that can be introduced through advance care planning. “When the decision is made at the end of life to take that last leap, it shouldn’t be a surprise,” Bevans says. “And the caregiver will be in a better place.”