Caregivers Chronicles: Embracing the person we love now

Published 8:01 pm Thursday, August 1, 2013

Not all dementia is Alzheimer’s disease.  But the course of dementia is usually progressive. Today, as we attempt to differentiate between the normality of lost keys when we age, and the pathology of dementia, an MD will often diagnose “Mild Cognitive Impairment” or MCI as a beginning stage of decline.   This was the answer from psychological testing with Sam in 2010. He had become anxious about his forgetfulness and sought help. At that time he was teaching a reduced schedule at a university. He was a much admired professor known for his wit and wisdom. But within the year, his devoted students were concerned that he was repeating lectures, not recording grades, and missing appointments. When they confided this concern to Sharon, his wife of 19 years, she began to review his lecture notes and to check grades, etc.  Soon her help was not enough, and with great sadness, Sam resigned in 2011. To be with him, Sharon also resigned from her home health supervision job. With a confirmed diagnosis of “frontotemporal dementia,” Sam’s personality and functioning rapidly changed.

At first Sam was sad and resistant to the changes that had come over him, but after six months he began to accept his limits, and now the changes are VERY rapid.  In two years Sam has become totally dependent on Sharon for food preparation, dressing, bathing, toileting and changing him when accidents happen.  Their love story, her nursing skills, and her memory of the good years of their marriage sustain Sharon through the enormous amount of care she provides him, as well as her total responsibility for their lives.

Sharon and Sam met in 1992 as divorced single parents invited to a “tall singles” pot luck. They were immediately drawn to each other. Their quick witty minds, their marital heartbreaks, and mutual interests overcame their distinct differences: he is an “over the top” extrovert while she is a quiet introvert. One romantic evening on Emerald Isle, amid phosphorescent sea foam, Sam proposed.  Their “happily ever after” meant they sold both their homes and moved into a setting neutral to their four mostly grown children. For almost 20 years they pursued their careers, were very active, and drawn into community life.  That is over now.  Sam moves very slowly, is restless and prone to wander.  He wears diapers and a sheriff’s “wander guard,” a life saver since they have had to activate a silver alert three times so far. The Beaufort County Sheriff’s Office (252- 946-7111) has a similar device called “CareTrac.”

When you ask Sharon how she manages the incredible demands on her life, she acknowledges she treasures Adult Day Care and needs help from respite caregivers who allow her to spend some time with friends every week. But she has learned to accept that Sam cannot even answer her but only echoes what he has heard. She clearly and profoundly states that her ongoing love for Sam allows her to embrace the man she lives with now.