Caring for the Caregivers

St. John Neumann physician turns devastating diagnosis into a lay ministry

By Bill Brewer
Photography by Stephanie Richer

St. John Neumann Parish is embracing a unique ministry that its members hope will grow to other parishes in the Diocese of Knoxville. Given the rising need, the chance of that happening appears good.

The St. Joseph’s Caregiver Ministry is only a year old but already is having an impact in assisting those on the front line of caring for seriously ill or aging loved ones.

The ministry is the idea of Dr. Brenda Nicholson, who has a personal stake in the role caregivers play in providing quality of life.

As a medical oncologist, Dr. Nicholson has been trained in the most advanced ways to fight cancer. As part of her training and experience, she also has learned the most caring ways to deliver devastating news.

And she has seen firsthand the importance of a good support system — for the patient and for those caring for the patient.

As a wife, a mother of two boys, and a leader in medicine, Dr. Nicholson’s schedule was demanding. But with her Catholic faith increasingly more a part of her daily life, she felt she was achieving work-life balance.

She had been director of the breast cancer program at Vanderbilt University Medical Center and was a Vanderbilt professor. She and her family then moved to Knoxville, where she went into private practice in 2003 with other cancer specialists. She was in the prime of her medical practice.

It never occurred to Dr. Nicholson, however, that she would be on the receiving end of devastating news. When a series of hemiplegic migraines prompted her to seek medical attention, tests revealed the unthinkable.

In 2014, at the age of 49, Dr. Nicholson was diagnosed with early-onset Alzheimer’s disease.

While she had always been the one to inform patients and their families of difficult diagnoses, suddenly she and her husband were trying to come to terms with just such a finding.

Now 53, Dr. Nicholson has no family history of Alzheimer’s disease, so the diagnosis seems to be an outlier. She acknowledged there has been much grieving as she, her husband, Don, and her young adult sons come to terms with the disease.

“With me being a doctor, I know what goes into it. But God has given us so much grace. He prepares us for the trials we have in our lives,” she said. “When I was first diagnosed, it was devastating. But it isn’t anymore. I’m happier now than I was when I was working. I have tremendous peace. There’s a great deal of fortitude that you need, and I’ve learned to trust God totally.”

Living in the present

Dr. Nicholson believes God amply prepared her for what she and her husband are going through. One of the side effects of the Alzheimer’s diagnosis is that she and Don have grown closer.

“We live more in the present moment and we laugh more now than we ever did when I was working hard. It has brought our whole family closer together,” she observed.

Part of living in the present has been creating the St. Joseph’s Caregiver Ministry. The idea came to Dr. Nicholson in June 2016 following a trip to Rome during the Jubilee of Mercy and an encounter with the parable of the Good Samaritan. She was taken by the words at the bottom of a prayer card she received that said, “Go and do likewise.” Her thoughts then turned to spiritual and corporal works of mercy she could perform. She prayed for a personal apostolate. And in the Year of Mercy, the caregiver ministry came to her like a vision.

She spent the next year defining the details of this new lay ministry based on her professional knowledge and personal experience. She approached St. John Neumann’s pastor, Monsignor Patrick Garrity, with the idea and its details. He gave her his blessing.

On the feast of Our Lady of Mount Carmel, July 16, 2017, St. John Neumann’s St. Joseph’s Caregiver Ministry was launched.

“My faith is everything as I live with this disease,” Dr. Nicholson said. “So I wanted this to be done within the Church, and I asked Monsignor Garrity if we could do this through the Church. He was very supportive. I’m trying to do God’s work, so I want this to be done under the Church’s authority.”

Under Dr. Nicholson’s guidance, the ministry has four dedicated volunteers who provide assistance to caregivers who are caring for loved ones. Relief can be in the form of counseling, assistance in seeking and securing resources, a support group, and a speakers program to provide expert advice.

Dr. Nicholson said East Tennessee is fortunate to have health-care, government, business, and Church resources that caregivers can turn to in dealing with medical questions, legal matters, transportation concerns, financial advice, and other necessities-of-life issues such as food and housing, utilities, and veterans services.

But many caregivers are unfamiliar with the resources available to them. That is where the St. Joseph’s Caregiver Ministry comes into play.

Although her diagnosis forced her to leave the practice of medicine, she has remained involved in efforts to find a cure for Alzheimer’s, an irreversible, progressive brain disorder that typically starts slowly and worsens over time. It is listed as the cause of 60 percent to 70 percent of dementia cases. There is no treatment to stop or reverse its progression, and the life expectancy for those with Alzheimer’s is three to nine years.

According to the National Institutes of Health, 5.7 million people have the disease, which is an increase from 5 million in 2015. Alzheimer’s currently is ranked as the sixth-leading cause of death in the United States, and recent estimates indicate the disease may rank third, just behind heart disease and cancer, as a cause of death for older people.

Two years ago, Dr. Nicholson was invited to speak at the Alzheimer’s Tennessee research symposium, where she and another doctor who also received a diagnosis of early-stage Alzheimer’s participated in a panel discussion about the disease.

And in October, Dr. Nicholson took part in a U.S. Department of Health and Human Services research summit on care, services, and support for people with dementia and their caregivers. The summit was held at the National Institutes for Health campus in Bethesda, Md.

She is encouraged that organizations around the country, including in East Tennessee, are committed to not only finding a cure for Alzheimer’s but also to supporting caregivers, something that she said “is such a pro-life activity.”

Dr. Nicholson has been leading workshops at St. John Neumann for caregivers and potential caregivers as part of the ministry and its speakers program. A workshop she led June 3 was the third in a series focused on arming caregivers with the information they need to effectively care for Alzheimer’s patients.

Topics of discussion ranged from personal testimonies of caregivers and best practices to the spiritual needs of caregiving. More than 20 people attending were introduced to terms such as nurse navigators, dementia-care managers, and non-licensed care professionals.

Dr. Nicholson was upbeat in leading the June 3 meeting, telling those attending that change is happening now, and while there may not yet be a cure for the disease, improvements in care are helping patients and their caregivers maintain a quality of life and avoid being financially or emotionally crushed.

A ministry of love

She said one of the ministry’s top challenges is convincing caregivers to accept help. They tend to be resistant to assistance.

To combat that, the ministry wants to show through its volunteers that it understands firsthand what caregivers face.

“We’re a ministry of love. Our mission is to bear witness to God’s merciful love through spiritual and corporal works of mercy as we support caregivers in their efforts to provide for the needs of those entrusted to their care,” she noted.

Although she works with four full-time volunteers, over the past two years Dr. Nicholson says more than 20 people have helped her at various times with the ministry. Some of those volunteers are within St. John Neumann Parish or from other parishes, while others were not members of the Catholic Church. She also has received assistance from East Tennessee Personal Care, Compassion Coalition, Alzheimer’s Tennessee, and Concord United Methodist Church’s Concord Adult Day Enrichment Services (CADES) program.

All volunteers with the Caregiver ministry have received HIPPA and VIRTUS training. They also have received resource training by the Compassion Coalition and attended caregiving educational programs by Alzheimer’s Tennessee. They received listening skills from Stephen Ministries and education on elder abuse from the Community Action Committee. Facilitators for the ministry’s support group received training from Alzheimer’s Tennessee and CADES. Alzheimer’s Tennessee also provided training for the ministry’s resource center volunteers.

Volunteers are the backbone of the ministry and vital to its future.

“God has given me the vision for the work, but my limitations make it impossible for me to do the work, so He continues to provide generous, loving people to help me. It has been a remarkable experience for everyone involved,” Dr. Nicholson said.

One of the volunteers providing support on a regular basis is Megan Vanderhoofven, who is director of the ministry’s resource center. Mrs. Vanderhoofven believes divine providence brought the four aides and Dr. Nicholson together.

“We were all at a point where we could step up, and we were all people who had experience,” she said.

“My interest was born from my family’s own personal experience. All of us have some experience doing this. We facilitate people finding the right help they need.”

Deacon Mark Syler, who serves at St. John Neumann, said he recognized the need for a support system to assist caregivers after his mother died from Alzheimer’s. In addition to that desire to give back, Deacon Syler said  Dr. Nicholson’s faith has been an inspiration to him.

“For me, she brings spirituality to our group as a Secular Carmelite. We’re being Christ in every element of this,” Deacon Syler said.

Dr. Nicholson described how she converted to Catholicism while in medical school at Wright State University in Dayton, Ohio. In Nashville, she felt a deeper spiritual calling, so she joined an Emmaus group at St. Henry Church. She felt a second conversion after visiting St. Patrick Cathedral in New York and said her faith was further formed while involved in the Secular Order of Discalced Carmelites, in which she continues to serve.

According to Mrs. Vanderhoofven, Dr. Nicholson’s insights into her own personal journey are invaluable to the ministry and its volunteers. And Dr. Nicholson’s outlook and determination are infectious.

“The tenacity that has made her this wonderful doctor is the same tenacity she has in being on this walk as a patient,” Mrs. Vanderhoofven said.

Volunteer Darlene Cruz, a member of All Saints Parish in Knoxville, hopes to model her service in the ministry after Dr. Nicholson.

“I want to grow my spirituality and learn from people’s challenges. My parents are aging and I have an innate desire to help people,” Ms. Cruz said, offering a pragmatic view of the ministry in its infancy. “I expect this ministry will grow because there is such a need for caregivers.”

Volunteer Anthony Venafro agreed. “As my generation gets older, there is a real need for caregivers,” he said, speaking from experience. Mr. Venafro has been a caregiver for his wife for about five years.

The volunteers’ personal experiences validate Dr. Nicholson’s vision for the ministry, and Deacon Syler said Monsignor Garrity grasped that vision right away.

Mrs. Vanderhoofven emphasized that the St. Joseph’s Caregiver Ministry assists caregivers; it does not provide them. She is hopeful that as the ministry grows, more volunteers will join.

“We give [caregivers] the resources, but they have to do the work. However, we follow up with them,” she said.

Dr. Nicholson echoed Mrs. Vanderhoofven’s point: “We journey with them so that they are not alone. We also want to create continuity in the relationship.”

She sees her illness as something she offers up to God. That redemptive suffering gives her peace and sustains her in her ministry, allowing her to “see my illness as what I do for the Church.”

And as she offers up, she also has been giving up. She and her husband went from a 5,400-square-foot house to a 1,300-square-foot apartment. They gave most of their furniture and belongings to charity.

“My husband wanted to move into the apartment,” she said. “I had to give up my work. I have given all that up as a detachment. It is grace through simplicity of life.”

From doctor to patient

It hasn’t been easy … or fair … for them. Prior to her rare diagnosis, doctors across the country were unable to pinpoint her illness. That prompted some physicians to suggest she was malingering just to secure disability status.

Then came the news no one expected.

And following the diagnosis of Alzheimer’s, she almost immediately went from having her opinions valued and sought after to being considered incompetent. Close friends and acquaintances exited the couple’s life. Those recent experiences have steeled her resolve to aid Alzheimer’s patients and those who care for them, especially since the doctor is now the patient.

“The doctor-patient relationship is such an important relationship. And hope is powerful in people’s lives. You need to be very realistic and trustworthy and offer truth with compassion. But you can touch a person in such a loving way, sincerely, generously caring for them in a Christ-like way. [Caregivers] can communicate God’s love,” she observed.

She also places great importance on the husband-wife relationship and the impact her disease is having on Don, who has become a caregiver.

Dr. Nicholson says she is “totally dependent” on Don, referring to him as “such a good partner.”

“He looks after me so I can look after everyone else. He’s been doing that a long time,” she said as they gazed at each other. “Where I stop, you pick up, and where you stop, I pick up.” Don, a financial professional who refers to himself as the silent partner, said it is vital to continue their partnership as she carries out the ministry’s vision.

“There is a real need. This is an underserved area, and I think it is just going to get worse considering the demographics. Anything we can do now to help the situation is good,” he said, noting that his wife gains strength and confidence from her ministry work.

Dr. Nicholson pointed out that the ministry is helping her cognitive function as she handles its administration.

“The doctors say use it or lose it. We don’t want anything to limit her,” said Don, who enjoys watching her administer the St. Joseph’s Caregiver Ministry but acknowledges the hardship of his wife’s illness.

“The diagnosis process was long and difficult, and it’s a really difficult diagnosis. There are no survivors of Alzheimer’s. It took a long time to get over the shock and for it to sink in,” he added. “She came to terms with it before I did through her spirituality and Carmelite association. Also, her familiarity in dealing with patients made a difference.”

Dr. Nicholson has modeled the ministry after her medical practice and her approach to dealing with disease. She would bring in specialists who dealt with different parts of the body affected by cancer. The same is true for caregivers, and that is where the ministry fits in.

Approaching medicine from a faith-based perspective has given Dr. Nicholson a fresh perspective. Practicing medicine and her diagnosis have opened her to even greater compassion for those with illnesses … and the ones caring for them.

“Now I’m living in that world. It really doesn’t seem surreal. It seems providential. The program is growing as I’m getting worse. And I’m going to continue to decline. That’s why I need volunteers to step in,” she said. “We are trying to protect life to the natural end. We need to embrace the caregivers who are on the frontlines of this. If you are a caregiver, please consider allowing us to support you in your efforts.”

Caregivers or anyone with a caregiver question who would like information on the ministry are urged to contact the St. Joseph’s Caregiver Ministry at st.josephsministry@gmail.com.