“The question caregivers ask me most frequently is how they can cope while providing all the support their loved ones need,” says Linda Darrell, Clinical Social Worker for liver transplant patients. It seems impossible to manage when care for a patient is added to a busy family life.
At the September meeting of the Multi-Organ Patient Educational Seminar, Ms. Darrell supplied caregivers with strategies to reduce the stress of their newly acquired roles. Usual family roles are turned upside down and add to anxiety over health and financial concerns. She said honest communication between patient and caregivers is critical to successful coping. And, she noted, rethinking one’s approach, staying open to life lived within a new framework, is also key.
When a loved one is ill, the family needs to redefine what “normal” means. It is clear illness changes things in everyone’s life. Whether it is recognizing that some duties are now beyond the abilities of the patient, or that a caregiver must accept that he or she is responsible for additional tasks, the family norm must be readjusted.
Daily life also needs to be redefined. As an example Darrell noted that a night of sleeplessness can be turned into productive time by reading, doing laundry, studying—all things that usually are done during daytime. Now “normal” may mean doing those activities at night or at other times.
But even though the impact of a chronic illness upon household routines, and family members’ expectations can be overpowering, Ms. Darrell counsels the caregiver and the patient to review the way they communicate and prioritize family values and activities.
“Do not assume the patient is nonfunctional or disabled,” she said. “He or she can still communicate and ought to be treated with the same dignity and participation as before. What needs to become normal now is frequent and explicit communication between both.” The danger is both parties can become angry, resentful, and frustrated if each bottles up his or her emotions.
Typically there is a temptation on the part of the caregiver to do everything for the patient. At the same time the caretaker may also continue with former activities without acclimating to the new “normal.” Ms. Darrell says there are ways the caretaker can take care of him- or herself, so unaddressed frustration and anger do not worsen. Identifying pleasurable, relaxing activities and acting on them, is one way to take some time out from caregiver duties.
Ms. Darrell offered two key communication hints for every caregiver. First, to avoid burnout, caregivers must recognize their needs, state them and then act on them. Second, without guilt, caregivers ought to be able to say no firmly, even though the patient may not want to acknowledge that the caregiver has limits. Before reaching your limits as a caregiver, she said, you need to know what they are. And, you need to recognize that you are human and that you have limits.
On the other hand, the patient needs to own his own feelings, to express them. Sharing between patient and caregiver can lead to resolution. Learning to take time together, sharing a walk, watching TV, can lead to closeness in a trying time.
In reestablishing priorities, families often realize that old issues are not issues any more. Time becomes precious. “You find you can’t do it all, all the time, and everywhere. You can’t fix everything,” Ms. Darrell said.
Telling the truth about illness is important. Sometimes family members hide what the doctor said or express denial, but telling the truth can lead to new knowledge and positive actions toward better care.
After the diagnosis, everyone needs time to process the news, become educated, and ask more questions of medical professionals. The more information you have, the more control you can feel over the situation, she noted.
Adjusting to a life of uncertainty is also critical, according to Ms. Darrell. “You do not want to be rigid because the unexpected can and will happen,” she said. Staying locked in old roles and routines and then adding new problems can lead to depression on the part of both patient and caretaker. Adopting new roles requires new skills and patterns. Role reversal is likely between spouses. Although it may be temporary, role reversal still requires an adjustment.
Ms. Darrell said it is unfortunate she usually does not see caregivers until patients are very sick and the caregiver has not discussed the worsening family situation with anyone who can help. It is important to ask for help—to widen the caregiver support team—and to take care of yourself, she said, addressing caregivers. “The most valuable gift is the best you and you need to take care of you.” To patients, she offered hope. “Be the best you can be. You are in the middle of your illness; you are not stuck; you are moving through it,” she said.
Ms. Darrell plans to develop a Liver Caregiver Support Group this year. Last fall she and Rita Webb, Pre-Transplant Coordinator, mailed a questionnaire to caregivers of patients who were evaluated for a liver transplant between January and October.
The one-page inquiry asked if caregivers were interested in forming a Caregiver Support Group that would meet for six weeks for 1 to 2 hours. They were also asked about their caregiving experiences.
The group, in addition to providing support to caregivers, will focus on life care planning, daily care issues, stress management, and self-management. Following the six sessions, Ms.Darrell and Ms. Webb will evaluate comments and results. Additional groups may be formed if the first group finds the experience helpful.
Ms.Darrell wants to collect information on the sessions to formulate future groups and share the results within Hopkins and with researchers at other transplant centers.
