Caring for the Caregivers
Taking care of a loved one with a chronic illness can be downright overwhelming, especially when it’s for a long stretch of time.
Trina Zahller, a social worker with the Palliative Care Service at UNM Hospital, says caregiver burnout is common. And if you’re a caregiver, you’re not alone.
Palliative care is a specialty that helps patients, their families and their caregivers during the hard times that come with a long-term illness. Zahller helps them to understand their treatment options for disease or injury by weighing the pros and cons and prioritizing what’s most important in their lives. Discussions with patients and caregivers can cover topics like self-worth, relationship, quality of life and emotional and spiritual well-being.
“I think an illness or injury is extremely isolating when you can’t do what you used to do,” Zahller says. “We help people give a voice to that. We help them find ways to connect to life and people outside of the hospital.”
Making a Difference
Whether it’s life-shortening or life-altering, the palliative care team helps an array of patients and their families.
“We get to see people heal and return to their lives,” Zahller says. “Sometimes that requires adjusting to a new baseline. Some people make the decision to go on to hospice. Sometimes we’re helping a family while a loved one passes in the hospital. It’s a full spectrum of patient care.”
Patients who have been diagnosed with a range of illnesses can benefit from palliative care, Zahller says. They might range from someone who has struggled with chronic obstructive pulmonary disease for 20 years, to someone living with cancer for five years, to someone who suffered trauma in a car wreck or suffered a gunshot wound.
The family, including caregivers, needs extra support and aid in decision-making. “The thing we hear most often is that they appreciate having a place to come where someone’s really listening,” Zahller says.
The most important message Zahller tries to convey to caregivers is that they have to continue to care for all aspects of themselves – body, well-being, spirit and heart. She counsels them on how to ask for help.
“Caregivers often think they’re being a burden by having their own needs,” Zahller says. “They can’t identify how someone can possibly help them.”
Zahller encourages caregivers to be open to receiving care and support from others, that they “don’t have to take it all on themselves.”
How can you help the caregivers?
- Well-meaning as it is, it’s hard for caregivers to hear “Let me know if there’s anything I can do” because the caregiver then must figure out what they need and ask for help.
Zahller recommends being really specific and saying something like, “I’m going to Costco. What can I pick up for you?”
- Consider bringing your neighbor or friend some easy-to-prepare meals and healthy snacks.
- Sometimes people can insist on helping in a particular way that might not be helpful to the family, especially if they already have that aspect covered. “Help by being flexible and understand that what that person needs might be different than what we expect,” Zahller says.
- Think before you text. Don’t send a text message asking how’s it going or how he’s doing. It could be that every day is a hard day. Instead, let them know you’re thinking of them by sharing stories or a picture. It’s good to let them know they haven’t been forgotten.
- Before dropping by, ask, “Is now a good time to visit? How much time is OK?” Don’t expect them to play host to you. Be aware of your loved one’s energy level. And, it’s OK for caregivers or the patient to limit how long visitors stay. For example, one cancer patient wanted visits but could only visit for 20 minutes before she wanted to lay down and rest. The Palliative Clinic helped her practice saying, “I really need to lie down. Do you want to sit with me as I nap or should we say good-bye now?
In addition to the everyday stresses of taking care of a loved one with a long-term illness, the holidays can be particularly taxing, says Sharon Lewis, PhD, professor emeritus in the UNM College of Nursing. She’s also the founder of theStress-Busting Program for Family Caregivers, a series of classes designed to guide caregivers on how to carve out stress-relieving moments for themselves.
The classes cover:
- The effects of stress on the mind, body and spirit
- How to create a relaxing environment
- Tips on coping with stress
- Fostering positive thinking and more
Just in time to de-stress, Lewis says sessions begin in January 2019 at four locations in Albuquerque. Call 830-377-1484 for more information.
Lewis refers caregivers in her program to Share Your Care Adult Day Services, which has five locations in Albuquerque, one in Rio Rancho and one in Gallup. Share Your Care provides day-long care of clients with long-term illnesses so that caregivers can do something for themselves. For more information, call 505-298-1700, ext. 21.