by Mary E. King
Tell us about the Caregiver Conversations.
Caregiver Conversations is a support group for folks who are caring for our patients at home. They can be family members, friends, neighbors, or one-on-one care for our patients. This hour-long meeting is a platform of support, listening, and encouragement. It is where caregivers can air their concerns and difficulties in a non-judgmental atmosphere of hope and empathy.
What are the requirements for becoming an oncology caregiver?
That is a huge question. Our caregivers do so many things, and I have some caregiver talking points that I use to present to the nurses about caregivers.
How did Caregiver Conversations come to fruition, and how long has it been in existence?
Caregiver Conversations was the brainchild of the Patient and Family Advisory Council. One of our members, who had cared for his wife during her cancer journey, said, “what are you doing for us—the caregivers—we are the boots on the ground, we are on the front line, we feel completely left out. We are doing things we feel inadequately prepared for, and I am flying by the seat of my pants.” That quote resonated. We put together a steering committee, and with some trial and error over the ensuing months, the support meetings are now offered once a week and well attended. We have been doing this for about six years and have had over 1500 caregivers attend the meetings.
What is your role in the Caregiver Conversations?
My role before COVID was to go around with volunteers on the in-patient units and meet with all of the patients and caregivers. We spent a good amount of time informing families of support services and then bringing them to the meetings. We have also learned that if you bake it, they will come, and we provide food in a welcoming and relaxed area.
Are your meetings only for caregivers?
Yes
Who should attend your meetings?
Any person who is helping care for an oncology patient at home is welcome to attend our meetings. We also have some staff members attend occasionally, but the program was started to offer assistance, hope, and help to the caregiver.
What does it mean to be a patient advocate?
A patient advocate is a spokesperson for the patient. It is someone who asks the questions, who has the patient’s best interests at heart, and is a cheerleader between the patient and the health care team.
What are the responsibilities of a caregiver?
The responsibilities of a caregiver are: administering meds, changing dressings, clearing lines, advocating for the patient, triaging care, helping with toileting and bathing, providing meals, attending to the financial issues (which are huge in themselves with insurance and government payers that must be attended to), feeding, serving as a family spokesperson, housekeeping, getting to appointments, and the list goes on.
How often do you meet, and on what day (s)?
The meetings are once a week: Tuesdays from 2-3 pm.
Who facilitates the meetings?
Our excellent staff: counselors, psychologists, chaplains, and social workers facilitate the meetings.
What are the essential qualities of the right caregiver?
Oh, that is a very hard question: patience, compassion, time, love for the patient, respect for the patient, and a heartfelt commitment to see the patient through the cancer journey.
Should a caregiver possess specific skills? Are there classes available for training?
All too often, caregivers are thrust into this job with little or no training, and it is a daunting role. My biggest concern is that the health care team recognizes the huge role of a caregiver—that they are included in all aspects of the patient’s care. From the first patient meeting, the team should ask the patient, “who did you bring to the visit today; and will he/she be your primary caregiver?” If the patient is older, I often recommend that a mini evaluation of the caregiver be done to ensure that the caregiver is psychosocially and physically able to care for the patient at home. This caregiver is then included, with patient permission, in all aspects of this patient’s care—teaching, palliative care, financial issues, pharmacy education, end of life issues, patient spokesperson, and legally if they have health care power of attorney.
How important is it for the caregiver to care for their own physical and mental health, while caring for a patient?
This is huge. All too often, we see caregivers suffering from “caregiver fatigue.” They are exhausted, their health is declining, they may be anxious, be gaining or losing weight, they may feel socially isolated, overwhelmed, have sleeping issues, and the list goes on.
Often, we in the healthcare field will say, “go for a walk, go to the gym, meditate, meet a friend for lunch, go to the movies,” none of which may be doable if the patient is critically ill, there is no one else to assist with the patient’s care, and life is going downhill fast. This is a caregiver who is at risk and will not be able to provide good care for the patient.
How do these meetings support caregivers?
These meetings support caregivers by giving them a platform to grieve, vent, and gain recognition. Issues that heretofore caregivers would not have felt comfortable sharing with friends and family members; they now have an opportunity to unload. And for our caregivers who attend these meetings, this is very gratifying.
What else can you share, about Caregiver Conversations, to help our subscribers know what to expect if they were to attend a meeting?
When people attend Caregiver Conversations, they will feel loved and supported, cared for, and resources will be provided as the need arises. Most of all of our supportive services under the Comprehensive Cancer Support Program are available without charge to the caregivers.
Is there anything else you would like to share with us?
This program’s development has added so much to the excellent care provided at UNC Cancer Hospital. Caregiver recognition is increasingly evident in our care—it is an essential aspect of our care. Treatment is now being done on an outpatient basis, and the caregiver plays an integral role in our patients’ well-being. With the average time that a caregiver spends caring for an oncology patient undergoing chemo is 39 hours a week, caregiving is a full-time job.
Who can people contact for more information?
If your readers want more information about the program or want to participate in it, they can contact me at loretta_muss@med.unc.edu.