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.”
If you have a serious illness, the bills for doctors, drugs and hospital visits can pile up quickly. For many families, money worries are sadly a big part of being sick in America.
Palliative care can help.
By meeting your needs and helping you plan for the future, palliative care can help you stay out of the hospital. You will get the care that you want, and avoid expensive crisis care like emergency room visits. You can get palliative care at the same time as treatment for your disease, so that you can live as well as possible. It is a team approach to care that puts you back in control of your life.
If you’re concerned about health care costs, your palliative care team can provide support. They can help you find out what services are covered by your health plan, both now and in the future, or you can call your health plan directly. Always make sure you understand what co-pays or fees you will be asked to pay.
Having this extra layer of support doesn’t have to cost you more. Palliative care is covered under both public and private insurance plans.
Most private insurance plans, as well as Medicare and Medicaid, cover palliative care services in the hospital, in rehabilitation and in skilled nursing or hospice facilities. Medicare and Medicaid don’t use the word “palliative” but the services are the same.
If you have Medicare Part A coverage, you may be able to receive palliative care in your community. Services could include nursing, social work and spiritual care visits. If you have Medicare Part B coverage, it may cover some services and supplies to treat your disease. If you are covered by Medicaid, it may cover some palliative care treatments and medications, including visits from doctors. Many private insurance plans provide coverage for palliative care as part of their chronic care, long-term care, or hospice benefits. Ask your insurance representative.
Quality care is within your reach. Find a palliative care provider in your area here.
In this episode of our Quality Life series, we hear from Malcolm, a 51 year-old Philadelphia man whose life changed dramatically when he was diagnosed with Multiple Myeloma. Malcolm shares how palliative care helped manage his pain and improved his quality of life. His palliative care physician, Dr. Arthur Siegel, speaks to the way that pain affects a person not just physically, but emotionally in this honest take on what it’s like to live well with a serious illness.
Malcolm White loves the Philadelphia Eagles and socializing with his friends. But when the 51 year-old was diagnosed with Multiple Myeloma, he experienced so much pain that it became hard to focus on anything else.
“It started out gradually with, you know, pain and stiffness in the back, which gradually got worse where it became really hard to move around,” he explained. “It started early, at the beginning of this year and it got progressively worse to where I saw a doctor and had some X-rays and they ran some tests and that’s when I was diagnosed.”
As his disease worsened, Malcolm’s quality of life continued to deteriorate. Eventually, he could no longer visit with family and friends, and he ultimately had to leave his job as a bus driver. “It was really hard just getting dressed every day, getting out of bed, you know going to the bathroom,” he recalled. “All of that, it affects you, you know, your whole life.”
According to the Multiple Myeloma Research Foundation, more than 77,000 people are living with Multiple Myeloma, a form of blood cancer. The American Cancer Society estimates that more than 26,000 people will be diagnosed with Multiple Myeloma this year. For people like Malcolm who are living with Multiple Myeloma, the symptoms that accompany the disease, most notably the pain, can be overwhelming.
That’s where palliative care comes in. Palliative care is specialized medicine for people with serious illness. 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.
Dr. Arthur Siegel, a member of Malcolm’s palliative care team, recalled Malcolm’s state when he was first referred to palliative care. “When I saw him, he was curled up in a ball. He was very tight. He couldn’t move because of the pain, couldn’t really get out of bed without hurting.”
But pain is more than a physical sensation. For Malcolm, like many patients, the pain that accompanied his disease negatively affected other aspects of his life. “If the pain is so severe that you need to be in the hospital, it means that you’re not going to be sleeping all that well,” explained Dr. Siegel. “You’re not going to want to eat because it hurts just to move, even to get food. It sometimes hurts to breathe and you just feel like ignoring the rest of the world.”
Malcolm’s palliative care team included Dr. Siegel, a nurse practitioner and a social worker. They immediately sat down with Malcolm to begin managing his pain and improve his overall quality of life, including his emotional well-being.
“Those symptoms that go along with pain mirror symptoms that go along with depression, and so they can go hand in hand,” explained Dr. Siegel. “Patients with chronic pain frequently get depressed or have depression.”
That’s why the multi-disciplinary nature of palliative care is so important. Team members from various disciplines work together to treat all symptoms collectively and to support the whole person. “Everybody played their part as far as my progress, through the team of doctors, the nurse practitioners, the social workers,” Malcolm said. “Everybody had a role.”
Soon, Malcolm’s pain began to subside, which he credits to palliative care. He is now and able to get around and is regaining weight and his appetite. “Things have definitely gotten better compared to a few months ago,” he said.
And now? He is back to focusing on what matters most to him: spending time with loved ones.
“I did attend a family reunion recently and have gotten together with some people, so yeah. It’s easier for me to get with people than it had been,” Malcolm noted. “The palliative care definitely helped.”
For palliative care physicians like Dr. Siegel, that’s music to his ears.”That’s what being a doctor is all about, is helping people feel better and live their lives. And palliative care allows patients to do just that.”
In this episode, we hear from Shari McClendon, who has pulmonary hypertension. We also speak to her husband and devoted caretaker, Jim. Shari and Jim detail the critical role that palliative care has played in improving their quality of life. Shari and Jim speak to how palliative care has supported their entire family in a variety of ways. Mary Martin, a nurse on the McClendon’s palliative care team, shares how the palliative care team helped Shari and her entire family deal with the realities of this disease. At the core, this episode is about Shari and Jim, and how their 38 year marriage has endured.
Serious illness can dramatically change not just the life of patients, but the lives of their family members, as well. In 1993, Shari McClendon was diagnosed with pulmonary hypertension, which causes abnormally high blood pressure in her lungs. Once an active hiker and skier, Shari struggled as her physical symptoms worsened.
“We had a two-story house and I first started feeling very short of breath when I went up the stairs, and getting more tired, and not having as much energy as I had,” explained Shari.
Shari’s illness also continued to affect her life as it progressed over the next 20 years. “I just had to continually, nearly every year, just reevaluate my life and see how I’ve had to slow down. And so it went from, you know, not being active and that, but eventually we had to sell our home and get on a one-story, and then I had to quit my job.”
Over the course of her illness, Shari continued to suffer from physical symptoms and increasing anxiety and depression.
“She just kind of crashed about two years ago, just exhausted from living, I think, and it was getting worse,” recalled her husband of 38 years, Jim. “I was looking for someone to help Shari deal with her depression.” He was referred by friend and cardiologist Dr. William Burnett to palliative care.
Palliative care is specialized medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms, pain and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.
Shari’s palliative care team included a physician, two nurses and a nun, who all worked together to provide various kinds of support for the McClendon’s. “They’re just real good to visit with me,” Shari noted. “I express my concerns, my needs, and they either check with the doctor and find out, you know, things.”
After a particular meeting with Sister Julie, the nun on her palliative care team, Shari’s perspective began to shift. “One of the things I had jotted down is that Sister Julie said ‘Treasure the moment,’ and that really helped me because I think I was so focused on the future and what was going to happen in the future that I was missing some moments here. And then another thing that she had said was ‘Trying to accept’ – and they’ve worked and worked with me on this one – is ‘being, not doing.’”
Jim and Shari McClendon
But serious illness doesn’t just affect the patient; it also affects the caregiver and the family. Shari’s whole family received support from the palliative care team, as Jim notes. “They’ve done a lot for me, yeah,” he said. “We have three children…they’re all three adults. They got to meet the team, so the team kind of knows our kids, too, and how they’ve grown up in this.”
Palliative care also gave the entire McClendon family the ability to talk openly about what was happening and to center her quality of life in Shari’s care.
“She doesn’t have cancer, she doesn’t have emphysema,” explains Jim. “They’ve kind of helped us know how to explain things to our friends and family.”
While helping them deal with her serious illness, palliative care has also allowed Jim and Shari to enjoy the simple joys of being married – cooking together and spending time with their family, for instance. Palliative care has also enabled them to take stock of what matters most to them – their loving partnership and precious family.
“They tell us what good people and what a good marriage we have, to have the family we’ve got – you know, they just remind us that our lives aren’t all bad,” Jim said.
For Shari, palliative care isn’t just an aspect of her overall care: “They’re part of our family.”
In this episode, we hear from Dannell Shu, whose son was born with severe brain damage. Dannell discusses the role the pediatric palliative care played not just in improving Levi’s quality of life, but in supporting the entire family as it navigated the waters of his chronic condition. Jody Chrastek, a nurse on the Shu family’s palliative care team, details how pediatric palliative care brought joy into Levi’s life in this moving take on what it means to care for a child living with serious illness.