by Brother Clement P. Shea Jr. HUNTSVILLE — In the last issue we emphasized the value of home-based long-term care of older and ill people who want to remain in their homes and whose families want their relatives to be there. Of itself, this is not enough. Without a caring and effective long-term care program, many problems – some very serious can arise. The following case study is based on fact and illustrates skill, knowledge of available resources, and compassion required to make a long-term care program work. Mr. Smith (not his real name) was a retired postal worker and widower for 13 years. He had a fairly large, close-knit family of two sons and two daughters. He was somewhat overweight and diagnosed as having incipient bone cancer. After a while he also began experiencing difficulty walking and could no longer get about by himself. His adult children became concerned and debated putting him into as assisted living facility or even a nursing home. Mr. Smith wished to remain in his home and was quite adamant on this point. Wanting to keep with their father’s wishes, the family procured the services of an experienced care-giver who would live with Mr. Smith and help manage his affairs. At this juncture, the care-giver’s duties involved meal preparation, seeing that Mr. Smith stayed on his medication regimen, and providing transportation to doctors’ offices, etc. Over time, Mr. Smith’s condition slowly deteriorated and he required chemotherapy and related treatments. This called for the development of a more intense care plan – which was worked out with the primary physician, related medical professionals, the patient himself, all family members, and the care-giver. Mr. Smith still wanted to stay at home and his family agreed. They wanted him to maintain his independence as long as possible. It must be noted that during this entire period, Mr. Smith was visited and helped by many volunteer friends. Retired postal workers in the area, fellow Knights of Columbus, parishioners from his church, and neighbors were frequent visitors. They volunteered often so as to allow the care-giver as much respite time as he requested. All such volunteers were trained carefully in order to meet the needs of the patient. Procedures, cheek lists, telephone numbers, etc., were all available. Mr. Smith enjoyed pastoral care from his local church. For two years, things went smoothly. Mr. Smith requested that the care-giver arrange a family picnic gathering which took place. Toward the end of this event, Mr. Smith experienced discomfort and collapsed. The paramedics were called and the patient was taken to the hospital. After two weeks, the doctors and medical professionals called for a family conference and informed them they had done all they could. Mr. Smith and his family opted for home care and hospice service was called for and set in operation – a wise choice and use of an effective agency. The hospice personnel planned things carefully with the care-giver and the family. A hospital bed and related equipment were installed in the home. Biweekly visits by a hospice registered nurse (R.N.) was scheduled. She instructed the primary care-giver and all volunteers on all levels of care needed by the patient and how they could help him – or quickly obtain assistance. Since oxygen assistance was required, an oxygen generator was brought in. The care-giver was instructed on the use of this equipment and procedures to mix distilled water and oxygen in order to avoid any bleeding of nose membranes. The care-giver and volunteers were instructed on how to drain the catheter bag utilizing sterile procedures in order to prevent infections to the patient. During this period a licensed practical nurse (LPN) came to bathe the patient several times a week The care-giver and volunteers were given careful instructions on how to do this for the rest of the time. They were also trained in how to change bed clothes in a manner that would least disturb the patient. The hospice provided an air mattress to help avoid bed sores. With guidance from hospice, the care-giver administered food and nutrition requirements to the patient. It was specified that while efforts to feed the patient be made, no force should be used in this regard. As Mr. Smith declined, arrangements were made for 24-hour coverage. The care-giver was trained in the administration of morphine and anti-anxiety narcotics. After two weeks with this high level of care, Mr. Smith died. His family was present. Conclusion It might be said that Mr. Smith was extremely fortunate in having such a loving family, outstanding medical care, a dedicated care-giver, and many friends who allowed the two and one-half year home care program to work. But no long-term care program just "works." It must be carefully developed, resources marshalled, all participants – from the care-giver to family and volunteers trained. The willingness of many people to assist the patient – with compassion and skill, is the glue that holds everything together. That is why such a new approach to long-term care in the home can and should be encouraged. Brother Clement is a former monk at Our Lady of the Holy Trinity Abbey, Huntsville.
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