Case study: Care of the caregiver–family member with a chronic illness / Analysis / Commentary
O’Connor, Linda J
Case Study: Care of the Caregiver-Family Member with a Chronic Illness Linda J. O’Connor MS RN, C
Linda J. O’Connor, MS, RN, C, is a Staff Nurse, Mt. Sinai Medical Center, New York.
Tom is a 79-year-old athletic, active widower. He has held many jobs and always has been very active in his church and local community. The last job Tom held was as social worker and cook at his community senior center where he met Diana, a 79-year-old divorcee with two daughters, who was a professional ice dancer before retiring. Tom stated “We have been friends for 14 years and together as a couple for 8.”
When they first met, they worked out at the gym, swam, and took art classes together. Tom’s first wife had been an artist, but he did not have an interest in art until he met Diana. Neither one was looking for a new relationship. Tom proposed to Diana several times. From the beginning, Diana’s eldest daughter, who has her power of attorney, was suspicious of Tom’s intentions. This was one of the reasons why Diana said “no” to Tom’s proposals, which cre ated tension in Tom’s relationship with Diana’s children.
In 1994, Tom noticed a change in Diana’s paintings and in her memory. In 1995, Tom and Diana came to the gerontological psychiatric clinic for a memory loss workup. Diana was diagnosed with Alzheimer’s disease. As the disease progressed, Diana was unable to continue painting, her mobility decreased, and her memory continued to deteriorate. She began to require 24hour care. To provide this care, Tom gave up the activities they used to do together and, as time went on, he gave up all outside activities, including the church. Tom said he prays at home and respects what the priest is doing but that his “church is now Diana; my concern and life is hers.”
At one point, Diana’s daughter had concerns about her mother’s care. Diana seemed to have some bruises on her arms and the daughter was concerned that Tom was abusing her. At the next visit, the nurse discussed this with Tom. He said he has arthritis in his hands and at times Diana would grab them too hard. In response, and in pain, Tom would grab her so that she would let go. After several family meetings and Tom’s attendance at a caregiver support group, he expressed a better understanding of the disease but still felt overwhelmed. Tom needed to provide almost all the 24-hour care.
The disease affected all aspects of Tom and Diana’s relationship. Tom stated, “Before the disease, we slept together like spaghetti. Now, sometimes we cuddle but we sleep in separate beds. She used to be a great talker, but now she hardly speaks. Diana is unable to paint and is less mobile. She is a shell of the woman she once was.” He said that sometimes he noticed she was “expressionless and still,” while other times she appeared to know him and “her eyes brightened up.” Tom said that he was saddened but, “I still love her and I am happy to be with her from beginning to end.” Diana now has end-stage Alzheimer’s disease.
Based on these data, what diagnosis would you make? Turn to page 152 for a discussion.
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