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Caregivers Need Care, Too
Patricia P. Normile
Source: St. Anthony Messenger magazine
Published: Saturday, May 22, 2010
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PICK UP A NEWSPAPER or view the news on TV or the Internet, and mention of health care is bound to surface. Health-care issues are real: How do I stay healthy, find proper care, pay the bills? While pragmatic concerns must be addressed, another essential element for health and wholeness is often overlooked or underemphasized. That element is the spiritual well-being of those who care for the sick, the aged or the dying.

The "spirit" aspect of the patients' and caregivers' health may take a backseat to medical challenges. Yet when spiritual caregiving is ignored, patients and caregivers may lose the blessings of spiritual strength and renewal.

Individuals become caregivers in a variety of ways. Some choose roles as medical professionals. Caregiving can be an accidental role, occasioned by an urgent need involving friends or family members.

Spiritual issues vary from caregivers who provide care for years in exhausting, frustrating situations to those called to give short-term care. As diverse as situations may be, similar spiritual questions confront all caregivers: "Who is my God?" and "Where is God in the midst of this suffering?"

We Christians follow the example of Jesus the storyteller. In that spirit I'd like to share some stories with you, stories gathered from my conversations with other chaplains around the country and from my work with Abbey Press in St. Meinrad, Indiana. I'm convinced that these stories reflect fundamental human and spiritual needs. After all, the heart of spiritual health is our belief that God's love accompanies both caregiver and patient. These stories help us to see that. They are used here with permission.

Ceese Belisle's father lives in Massachusetts, hundreds of miles from her in Milford, Ohio. She says, "God is love in any form I perceive. God is my sounding board. I tell God my concerns, seek direction, thank Jesus and the Holy Spirit for positive insights I receive. God's love surrounds me. God gets me to Dad when I'm not up to it. The warmth in my heart when I hold Dad's hand, though he doesn't know I'm there, reflects God's love."

She goes on: "God gets my crying, my fears and complaining, my guilt at not moving back to care for Dad directly, my wondering what happens after this life, my loneliness and turmoil. My faith feels weak and strained at times. I'm thankful that I see God in my work and in the people around me."

Although Ceese cannot care for her dad on a daily basis, she shares God's love with others. A nurse trained in Healing Touch therapy, she leads a Church-approved Healing Touch program, providing spiritual and physical care for parishioners. Ceese relies on the Holy Trinity for wisdom, strength and a peaceful spirit. She knows this is her spiritual journey.

Prayer strengthens caregivers for tasks they may not feel capable of performing. As a resident home chaplain, Barb Luebbers of Amelia, Ohio, understands the spiritual needs of sick people and their caregivers.

When her husband had serious cancer surgery, Barb needed to cleanse his surgical wounds. That task almost caused her to faint. "My source of strength comes from the Holy Spirit and God's angels. I pray that they are with me as I bandage the holes cancer made in my husband's face and ear. I feel lightness, a supportive, loving presence that helps me do what I must.

"Like children, we play a game called Gratitude, naming things we are grateful for. We are uplifted by acknowledging God's blessings. Nature is important in our lives—feeding birds, watching deer try to get birdseed from the feeders. God the Creator is present in the created things we love.

"Journaling helps. I pour out my heart to God. It's my avenue of letting go and accepting what is. I pray to Jesus, who knows the emotional and physical aspects of suffering. I ask Mary to assist me in accepting my loved one's suffering. Mary knew acceptance; she watched Jesus carry his cross and die an unspeakable death. Praying for our sisters and brothers everywhere who are suffering or dying and for their caregivers lessens our own concerns and is healing."

Self-care is not selfish; it's essential in caregiving. Marcy Schutte of Milford, Ohio, is both a professional and family caregiver, a dual role that often exhausts her. She restores body, mind and spirit in several ways.

"My spiritual activities," she explains, "are walking, soaking in nature through senses of taste, smell, sight, feeling the temperature, hearing the quiet, the wind and rain. God is in nature. Thanksgiving comes quickly where nature abounds.

"My nightly bathtub time is a restoring ritual. I slip into the warm tub, close my eyes, talk to myself and to God. I may be mad and cursing, happy and singing or crying from frustration, overwhelmed by things I can't control, but it helps to talk out loud. I thank God for being blessed with water and a tub! Where my tub is, there my God is!

"As a caregiver, I feel an intimate closeness to God. God is my best friend! I don't see a face during prayer, just sense a presence that's always available. I pray to the Holy Spirit when I must do something I'm afraid to do or lack courage to do. My loved one seems comforted by mention of God or Mary, which reinforces the fact that we are from God. Everything is connected to God."

Marcy expresses what many caregivers share. "My 'church' is my parish community. Our caregivers' support group is facilitated by parishioners experienced in caregiving. Prayer concerns are shared via phone and e-mail. Volunteers visit nursing homes to provide spiritual care—praying the Rosary, bringing the Holy Eucharist, conducting prayer services. They are the hands of God."

Habits of a lifetime sustain caregivers when difficulties arise. Mercy Sister Fran Repka's father cared for his wife for two years after her diagnosis of cancer. "Watching your dad take care of your mom is like watching an angel," someone told Fran, who lives in Cincinnati.

"Dad was the ultimate caregiver," says Fran. "I know of no other 92-year-old man who would care for his loving 89-year-old wife as he did: changing her colostomy bag, monitoring her medications, accompanying her to the bathroom, assisting with bathing, organizing visitors, offering hospitality, tending to her personal and spiritual requests. When Mom could no longer attend Mass, Dad put on the TV Mass. They said the Rosary every night.

"When we children insisted that Dad needed help with Mom's care, he made it clear that he and Mom had talked about what she needed and Dad wanted to do it. 'It's my call. Please respect that,' he said. We took homemade meals to Mom and Dad daily, washed their laundry, did their housecleaning. It was a privilege.

"But Dad was Mom's personal caregiver. They were like two lovebirds. Wear and tear on Dad became evident. We worried. But if you asked Dad how he felt, he said, 'I'm fit as a fiddle!' It was a spiritual experience for him.

"For spiritual solitude, he tended his huge garden. Dad loved nature and enjoyed his garden, bringing in fruits to show Mom. She died at home as she wished—with Dad holding her hand as promised.

"Two weeks later, Dad, who had not had health problems, required emergency bowel surgery. Afterward, for nine wonderful days, I had the privilege of being one of his caregivers.

"Dad's passing was beautiful. He called his children to his bedside in ICU, requesting that we take him home. He was in charge and completed unfinished business. He sang songs in Czech with my aunts, reminiscing about good times. He spent time with his seven children, 26 grandchildren and 35 great-grandchildren. He requested that we say the Rosary with him each evening, 'for Mom.' One night he stopped the Rosary, asking if we had contemplated the second half of the Hail Mary: 'pray for us sinners, now and at the hour of our death.' 'It won't be long now,' he added.

"Dad's bed was near a picture window where he could see the green trees of summer. He gave instructions how to harvest his garden. Around his bed Dad's pastor shared a moving eucharistic liturgy. We thanked Dad for being a wonderful father.

"Caring for him those nine days was a spiritual novena. It was pure gift. His caring for Mom seemed to shorten his life, but being with her on a deep spiritual journey meant more to him than anything else in the world. Now I understand."

Guilt and resentment raise their nagging heads when caregivers fret that they are not doing all they might do or when they feel that they are not being appreciated. In Kentucky, Andrea Conroy felt she had a bad attitude about caregiving for her mother. "My siblings were unable to help," Andrea says. "Mother was angry that I wasn't doing enough. 'The Lord loves a cheerful giver' was a big deal for me and I felt anything but cheerful," Andrea explains.

"I went to the Sacrament of Reconciliation to talk about my difficulties. The priest listened and then gave me my penance. I was to go into the church, walk the Stations of the Cross, then come back and tell him how many people looked like they were having a good time. There were none. He said the Christian walk is a walk of service. That is what I had signed up to do, both in the situation with my mother and as a Christian. That resonated with me.

"Since Mother's death, I have forgotten the difficult times. I celebrated the anniversary of her death with my siblings by listing 10 wonderful things about Mother and what I thought she had passed on to me. We ended well. I don't lose a moment's sleep now, thinking I should have or could have done more. After the Reconciliation, I looked on caregiving as Christian service rather than the duty of a frequently unappreciated daughter. That made all the difference."

The sacraments of the Catholic Church sustain caregivers who feel stretched beyond their abilities. Gloria Jarrett's caregiving hangs especially on the Holy Eucharist. She states, "Jesus said, 'This is my body' and 'This is my blood.' Do we think he was kidding? Jesus said, 'Do this in memory of me.' What part of 'Do this' don't we understand? I always believed that I was born into a Catholic family because that's where God wanted me. It's who I am and where I was meant to be. I ask, 'What can I do for you, Lord?'"

Answers come. Gloria, who lives in Miamiville, Ohio, became a kidney donor for her brother. She serves in a nursing home and in her parish's bereavement ministry. Then came her husband's diagnosis of a rare, serious blood disorder, and doctors gave him a month to live. The family gathered. A do-not-resuscitate order was advised. Hospice was notified; equipment was ordered for his care at home.

Gloria remembers, "We came to the conclusion that the doctor had his say; now we would see what God wanted. I believe when we put things in God's hands, we surrender them to his will. Whether God answers yes or no, we accept whatever happens—no whining or getting mad if God wants something different from what we want. I attribute my strength of spirit and body to a supernatural gift from God.

"During those months when my husband was very ill, I reached for God on my knees and sought the Communion of Saints to pray with me. I found comfort in novenas and praying Rosaries. I visited the church, lit candles, prayed and found someone to give me Holy Communion.

"A year beyond diagnosis, my husband enjoys a good quality of life. There are no easy answers about how long this will continue. Each day is precious. Our marriage and love have never been stronger. In the midst of illness and adversity, you experience great blessings."

Caregivers often share with patients the wisdom of Scripture and God's mercy. A hospice visitor, Deacon Amado Lim of Blue Ash, Ohio, knew Richard well. World War II veteran, great storyteller, man with a fine sense of humor, Richard (name has been changed) was a joy to visit. Then one evening Deacon Lim noted that he looked unusually sad. "I asked him why," says the deacon. "He said he was afraid."

Richard continued, "I've shared many stories, but there's one story I've not told you or anyone." When Richard's unit attacked a Nazi hiding place in Belgium, they met heavy fire and his best friend was mortally wounded.

"I became livid," Richard said. "I entered the building with my gun blazing. I saw two Nazi soldiers fall. I rushed toward them. They sprawled on the floor, covered with blood. I saw their faces. They were barely 12 years old—children! They didn't say anything, just looked at me. Their faces were pleading, begging for mercy. My adrenaline pumped furiously. I shot them both. The faces of those boys have haunted me ever since. I cannot erase their images from my mind. Now I'm dying. I'm afraid to stand before God. He'll never forgive me for what I did to those boys."

Deacon Lim invited Richard to describe God. To Richard, God was a just God who rewards good and punishes evil. Voice trembling, Richard said that he couldn't imagine God forgiving anyone who hurts children.

Deacon Lim asked Richard to read aloud Bible stories describing God's mercy. When the repentant criminal crucified on Calvary begged, "Jesus, remember me when you come into your kingdom," Jesus replied, "Amen, I say to you, today you will be with me in Paradise" (Luke 23:42-43). Richard wept.

When Deacon Lim returned later, Richard smiled. "I'm no longer afraid. Jesus forgave the criminal. He forgives me because he knows how sorry I am." Richard died two days later.

As believers in a merciful, loving God, in Jesus who sustains us with his body and blood in the Eucharist and offers forgiveness through the Sacrament of Reconciliation and who shares in the Holy Spirit's comforting presence, caregivers possess a spiritual wealth that sustains them and those for whom they care.

Patients and caregivers gain the blessings of spiritual strength and renewal if spiritual caregiving is recognized and nurtured. Caregivers are truly sacraments of God's love.

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