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How to Support Loved Ones Dealing With Long-Term Illness and End-of-Life Care
BY Laurie Ghigliotti
Terminal illness, disability, traumatic injuries and aging are realities that challenge not only those suffering, but their families and communities as well.
When those suffering and those who care for them remember their faith, great things can happen.
Kim Shankman, dean of Benedictine College in Atchison, Kan., is a mother whose teenage son was badly injured in an automobile accident this past spring.
Her son John, 18, is currently receiving intensive therapeutic care for a brain injury.
In the early days after the accident, his condition was touch-and-go, but Shankman and her husband held fast to their faith and reached out to their community, asking everyone to pray for their son and for the grace to accept whatever might happen.
Shankman uses social media to keep everyone informed on John’s condition and particular prayer needs.
Visitors to the hospital and the rehabilitation facility helped the family cope, and the community reached out as well, assisting the family in various ways and even organizing fundraisers to help with expenses not covered by their insurance.
A recent post alluded to a difficult day for the Shankmans: "Today, although like always, it’s hard to see him suffer, I still had this real peace that he is doing what he needs to be doing, and God is watching out for him, so it’s not my responsibility to figure out how to fix the storming [in our lives]. I just need to be with him, helping him as I can … but trusting in Another, who loves him even more than I do. When I can do that, everything is simple and good."
In reflecting on the ordeal, she also noted: "I also feel that our experience during John’s trials has given me a much deeper and more concrete understanding of God’s fatherly care for us."
Embrace Suffering in Christ
Father Michael Duesterhaus of Our Lady of Angels Catholic Church in Woodbridge, Va., has been a priest for 22 years and has also served as a Navy chaplain. He believes that, unlike the Shankmans, some Catholics have forgotten the purpose of life and, as a result, don’t understand the role of life events such as sickness and death.
"We have to see illness is something that was brought into existence by Original Sin — it was not in the Lord’s design," he said. "Thus, God permits sickness and death. See that he embraced death and ultimately conquered death. Thus, for us, his children, all things are possible if we stay on his path."
Elmer Fangman, a counselor in Atchison, recalled when his youngest daughter was born with Down syndrome, and he and his wife were taken aback momentarily. But they quickly accepted the situation. With every trial he has encountered in life, that has been his response. Now in her 30s, his daughter has a job where she is supported and encouraged and is a valued member of the family.
"My parents taught me to live the life God puts in front of you," Fangman said. "You do the best you can with it."
Fangman’s outlook is similar to that of Father Duesterhaus. "Accept the diagnosis and then just live life," the priest advises.
Father Shane Tharp of Holy Name of Jesus parish in Chickasha, Okla., believes that people have difficulty facing their own and others’ sufferings for several reasons. "First, I would guess that it’s too real, and it’s too ugly," Father Tharp said. "Second, I suspect not a lack of faith, but a disconnect from their faith. It’s as though they relegate Jesus to Sunday, but when they need Jesus the most, they forget he’s there."
But relying on Christ is exactly what is needed.
In addition to a positive and accepting outlook on the trials of life, Father Duesterhaus and Father Tharp agree that the support of the parish community is essential.
Father Duesterhaus said, "If we really accept that we are part of the family of God, then we should fulfill the corporal works of mercy and visit the sick. No major production, just time spent, conversations about family histories and the children bringing some flowers and cards. Visit a shut-in for an hour twice a month and call on the other weeks, and hearts will be changed."
And one’s Catholic sacramental life is vital. (See Catechism of the Catholic Church starting at 1499.)
One problem for the faithful, according to Father Duesterhaus, is that some family members making decisions might not adhere to or even understand or know the dying member’s wishes for a Catholic funeral.
Added Father Tharp: "For many people who are dealing with terminal illness and other difficulties — family, the ill and the medical personnel — it’s almost a taboo subject to talk about the fear of death and the sadness of losing loved ones."
‘Face of Christ’
With Catholic hospitals declining in number, Catholic health-care workers are in a unique position to bring the gaze of Christ to the ill, disabled and dying.
Curatio Apostolate of Catholic Healthcare Professionals formed to provide support for Catholic health-care professionals in response to Blessed John Paul II’s invitation to the New Evangelization.
The apostolate’s mission director, Dianne Johnson, explained the spirituality of Curatio’s members. "As Catholic health-care workers, we see in each patient the face of Christ, and we try to be the face of Christ to both patient and fellow worker," Johnson said. "If we enter our work from his heart and in a proper sacramental relationship, we have at our disposal graces and resources unavailable to others. These resources, these graces, make it possible to do our work in the fullest way without fear of burning out in the face of exceptional burdens inherent to our work. We see this apostolate as part of the New Evangelization, bringing Christ into every corner of existence."
Curatio member Teresa Peyton Tawil, a geriatric nurse practitioner, feels a close connection to the body of Christ in her work. "I keep cards of the Chaplet of Divine Mercy in my lab coat," Peyton Tawil said. "A few times per week, I work with a soul who is open to finding healing in Christ. Protestants will also embrace it, since the prayers center on obtaining graces from Our Lord. The image of Our Lord, as described by St. Faustina, draws all who see it eagerly toward him, inspiring us to spend time in prayer and trusting him with our worries. It is a wonderful evangelization tool. We have a golden opportunity to introduce patients to the light of Christ and his mercy when we are working so intimately with them."
Dominic Pio Gundrum’s story reaches across not just parish lines, but state and regional lines, too.
Dominic was born in Wisconsin with a rare condition in which part of the brain forms outside the head, and the two halves of his head and face failed to come together in utero.
Dominic’s parents, Mark and Mary, were able to arrange for surgery soon after he was born, but the surgery was done at a hospital in Boston, far from their Wisconsin home.
With seven older children’s needs to consider, the Gundrums faced a dilemma trying to keep the family together during this trying time.
In the end, the family was able to stay together in Boston for Dominic’s surgery thanks to another Catholic family who lived in the area, who gave up their home to the Gundrums during their stay in Boston. Others also came to their aid, bringing groceries and even Christmas presents for the Gundrum children.
Leslie O’Brien got the ball rolling for this cooperative effort. "My husband, Kevin, and I used to live in Northborough, Mass., and our parish was St. Bernadette," O’Brien said. "I called Mark and asked if I could call my old parish because I knew they would want to help. Mark agreed and sounded a little relieved to get some needed supplies."
"As Catholics, we are called to serve others, and this was a perfect opportunity to do just that. Everyone just wanted to help. Dominic brought so many people together for a common good," she added, noting that her friend at the Massachusetts parish, Jen Shields, helped spearhead the project.
Shields plunged in to help without hesitation. "Helping others in need is one of the basic obligations of our Catholic faith," she said, noting that "the parish continued to pray for Dominic’s healing and the family’s strength."
"It was amazing to see how people heard Dominic’s story and pretty much dropped what they were doing to help," Shields said. "How could we, as Catholics, let a family living in a foreign city go through this alone? Their story was inspiring — their need to stay together as a family moved everyone, and their courage to bring Dominic to Boston for a complicated surgery was truly brave. Talk about a leap of faith! We were awestruck by them!"
"You simply act when you know you’re doing God’s work," she added. "Simply put, it is living the Gospel. It wasn’t one person; it was a community, a parish who answered the call. That made it even easier. We loved knowing we lightened the load for the Gundrums."
Today’s medical technology can assist people with serious illness, a disability or devastating injuries, but it can also create ethical dilemmas.
"The first decision belongs to the person who is ill," Father Tharp said. "They need to be fully versed on what the procedure, prognosis and treatment regime will entail. This includes a benefit analysis of the treatment, expense and availability of the treatment."
"In addition, Catholics need to have a person delegated as their medical representative in case they are incapacitated and cannot express their consent to treatment," he added. "Living wills or other advance directives do not conform to Catholic medical ethics, but granting someone the durable power of attorney is."
"Generally, I as a priest would rather be told sooner rather than later [about someone’s illness]. There is still a sense, especially among poorly catechized Catholics, that you don’t call the priest unless the person is about to actually expire," Father Tharp added. "Don’t do that. Don’t, don’t, don’t do that. You deny your loved one the chance to receive not just the anointing of the sick, but also confession and viaticum. If there is a danger of death or very serious illness, call the priest."
And never lose hope.
Teresa Kramer of Dumfries, Va., is the mother of eight children, the oldest of whom is 13. They are parishioners at Father Duesterhaus’ parish. She tells her children that suffering and death are hopeful parts of life: "I think that it’s important for them to see all of life, not just the happy, fun side. When it comes to suffering and death, we always keep God and heaven and hope in the picture."
Laurie Ghigliotti writes from Atchison, Kansas.