Providing Spiritual Care According to Disease Process: ALS

Providing Spiritual Care According to Disease Process: ALS Brief Synopsis of the Disease A person with ALS usually has problems in dexterity or gait resulting from muscle weakness, or with difficulty speaking or swallowing. According to Drs. Gordon R. Kelley and Stanley J. Swierzewski, III, “sphincter control, sensory function, intellectual ability, and skin integrity are preserved. Patients become paralyzed and often require ventilation and surgery to provide a new opening in the stomach (gastrostomy). Loss of respiratory function is ultimately the cause of death for people who have ALS.” (http://www.healthcommunities.com/als/overview-of-als.shtml) The ALS Association indicates that “most commonly, ALS strikes people between the ages of 40 and 70, and as many as 30,000 Americans have the disease at any given time. ALS has cut short the lives of other such notable and courageous individuals as Hall of Fame pitcher Jim "Catfish" Hunter, Senator Jacob Javits, actors Michael Zaslow and David Niven, creator of Sesame Street Jon Stone, television producer Scott Brazil, boxing champion Ezzard Charles, NBA Hall of Fame basketball player George Yardley, pro football player Glenn Montgomery, golfer Jeff Julian, golf caddie Bruce Edwards, British soccer player Jimmy Johnstone, musician Lead Belly (Huddie Ledbetter), photographer Eddie Adams, entertainer Dennis Day, jazz musician Charles Mingus, former vice president of the United States Henry A. Wallace and U.S. Army General Maxwell Taylor.”( http://www.alsa.org/about-als/) The person we are most concerned about in this article is the patient you are providing spiritual care for. The Nature of this Disease Demands Knowledge and Expertise ALS is a complex disease as you can tell. It has been a challenge for me to stick to the very basics when characterizing ALS. The Hospice Chaplain will have to do much in depth reading and study to gain an understanding of what the patient is experiencing and, also, what the caregiver(s) are experiencing. I am not stating categorically that a novice Chaplain will fail in providing ministry to the patient because our first priority is to provide an environment of loving support. It is assumed a Chaplain of any level of experience can do that. However, the Chaplain must be prepared for discussions about suicide, the character of God, theodicy, and reconciliation with others to name a few. In providing spiritual support for the spouse/caregiver, inter-active listening skills must be at their best as she will have the need to vent her frustration, her fatigue, her anger, her bewilderment at how this could have happened to her husband … and to her. Perhaps three pastoral encounters will illustrate the challenges the Chaplain will face. In Pastoral Encounter 1: The patient was a male; in his 60’s; a leader in law enforcement and politics. He was accustomed to being in control of other people and his circumstances. His wife was demure and supportive. As I came to know him more, it became clear that he struggled to accept his physical limitations. His mind was unaffected by the disease, but everything else was severely diminished. He would often talk of his four attempts at suicide. Soon after he received the diagnosis of ALS, he attempted to shoot himself, but his wife interrupted him and he failed. This suicide scenario played itself out three other times. Each time, his wife or family friend interrupted him. He bore great resentment toward his wife and friend. His treatment of his wife was tinged with meanness and acrimony. Yet, she faithfully met his needs and did everything possible to prevent him from getting bed sores and other skin breakdowns. However, in my pastoral encounters with her, she was filled with hurt and tears. A watershed event occurred one day as she left the home to retrieve the mail. As was her practice, she turned her husband’s wheelchair toward the picture window so he could watch her walk down the driveway to the mailbox. This time, she tripped and fell on her right side and broke her hip. Because of the time of day, neighbors were not home to hear her cries for help. She lay in the driveway for two and a half hours before a repairman discovered her. All the while, her husband watched in tortured emotional agony. He wept and screamed and prayed. From that event forward his treatment of her changed to a loving and appreciative manner. Toward the end of his life, he desired to forgive a number of people and also desired to seek forgiveness from his family. We talked about forgiveness on a couple of occasions. He was able to seek forgiveness from one of his daughters. The other children were not accepting of his offer. He died because of respiratory complications. Pastoral Encounter 2 involved a married woman in her 60’s. She felt betrayed by her body and by God. She wanted healing so badly. She could not understand why when she was the happiest in life this disease had to strike. Her religious background left her guilt-ridden because she had not been to church in years. She did not feel worthy to pray. Her current marriage was her 3rd. The church rejected her for this and would not provide the sacraments or ministerial support. There were family dynamics: The spouse would leave the home whenever a hospice staff member would come by. The bond of marriage appeared weak. She was alienated from her son and daughter. There came a time during her last year of life when she reconciled with her son. He became very close to her until her death. The daughter lived out of state. She came for a week’s visit. During that time she and her mother reviewed and attempted to resolve past issues. After the daughter left, she was not heard of again. The patient died of respiratory complications. Pastoral Encounter 3 involved a young adult male who lived with his mother in a mobile home park. There were multiple dynamics that made this case complicated: he was very angry at God because he was going into the ministry when he was diagnosed with ALS. How could God ask him to serve and then strike him with this disease? At first, his mother did not permit me to see her son as she was afraid of what he would say. She had her own issues to deal with … close to retirement age, confused spiritually as she tried to accept this disease and her son’s impending death, trying to deal with the remnants of a broken marriage, and trying to simply live out what she believed was her faith journey. I spent many hours listening to her pour out the pain within her heart. Unfortunately, by the time I was able to gain access to the patient, his ability to speak was gone. He attempted to use a computer to communicate, but that did not work. I sat with him in silence … which he accepted and acknowledged as something he liked. The patient died of respiratory complications. These pastoral encounters demanded my best in pastoral care skills. There were times when I felt inadequate for the task; confused with my own understanding of theodicy; and, very aware of how fragile relationships can be. I wish for you the best as you provide skilled pastoral care to patients suffering with ALS and their families who journey with them. Take encouragement from a sentence from a really good article in The Gerontologist, Vol 42, Special Issue Ill, 24-33, “A Biopsychosocial-Spiritual Model for the Care of Patients at the End of Life by Daniel P. Sulmasy, OFM, MD, PhD1: “At the end of life, the only healing possible may be spiritual.” And, that has to be enough.