Living Well as a Caregiver: Mary’s Palliative Care Story
Mary Tibbats knows firsthand what it’s like to care for an aging parent. She is the primary caregiver of Mary Nolan, her 88 year-old mother who has diabetes, but enjoyed an active lifestyle.
“Mom was 88 years old, totally and completely independent, except she didn’t drive any longer but she lived on her own,” Mary said. “She paid her own bills, ordered her own medication, sorted her medication every week, cooked her own food, went out and played Bingo, crocheted, did everything, totally independent, got up and around.”
On Thanksgiving, Mary’s mother was peeling 26 pounds of apples to make applesauce. Less than a week later, she went into congestive heart failure after a rehab visit at the hospital to improve her blood flow. Her quality of life quickly deteriorated.
“She’s Russian. She’s very strong. To see her down like this was really, really hard,” recalled Mary.
Mary’s mother was in out and of the hospital and rehab facilities, but her quality of life continued to deterioriate. She was still incredibly weak and of the nearly 20 doctors that Mary’s mother saw, none thought that she would ever be ambulatory again. Desperate to improve her mother’s quality of life, Mary turned to palliative care.
Palliative care is specialized medical care for people with serious illnesses. It focuses on providing relief from the symptoms, pain and stress of a serious illness. The goal is to improve the quality of life for both the patient and the family.
“In palliative care, we try very hard to help the patient themselves understand with clarity what decision would be the right decision for them based on their own quality of life,” explained Dr. Leanne Yanni, the physician on Mary Nolan’s palliative care team. “With Mary having been in and out of hospitals and in rehab and now again back in an acute care setting, she was, I think, often not talked to directly to because she looked weak, she was weak, and she was bed-bound really at that point.”
The palliative care team sat down with Mary Tibbats and her mother Mary Nolan to discuss their goals for her care and what quality of life meant to them.
“Once we understood that, we could help navigate the interventions that were being suggested or the course of care that we should take to support that view of her quality of life,” Dr. Yanni noted.
Mary’s mother’s health and quality of life both began to improve. But that is only part of the story. Palliative care treats seriously ill patients, but it also treats their families. Mary, struggling with caregiver burnout, needed support, too.
And she isn’t alone. According to a Pew Research Center poll, nearly 40 percent of American adults care for someone with serious health issues. As the baby boomer generation ages, the number of Americans 65 and over is expected to jump from 12.4 percent to 19 percent. This means that even more American adults will become caregivers to elderly adults like Mary’s mother.
That’s why access to palliative care for caregivers and families is critical. For Mary and her family, Dr. Yanni and the palliative care team made a significant impact on their quality of life as they cared for Mary’s mother.
“Palliative care brought a sense of comfort to her daughter, who was in a stage of very significant caregiver burnout, a very common scenario for children taking care of their parents or parents taking care of their children, depending on the situation,” recalled Dr. Yanni.
Through the support of the multidisciplinary team, including spiritual support and psychosocial support, Mary was able to express her feelings and develop goals for her own care, in addition to her mother’s. Mary felt comforted by the whole-person approach that the palliative care team brought to her and her family.
“They were doing what was necessary to help my mother and to help me and my brother, and my husband and my kids,” explained Mary. “They helped. They had that piece of compassion. Dr. Yanni was probably one of the most compassionate people that I dealt with, and I think that that was a big help and big piece of it that made it much better experience. The palliative piece kept me going as much as don’t give up.”
Today, Mary and her mother are doing well, a reality Mary attributes to palliative care.
“Having her in palliative care and the fact that they were continuing to do things to help mom, played a part in the fact that my mother is still here with us today. Because of that palliative piece, I believe my mother is now walking around, playing Bingo, and back in her apartment, living on her own again.”