Memorable Loss
In our country, we now live longer and bear a greater array of problems associated with older age. One that prevails in our neck of the woods more than any other is dementia. For instance, Hinds County ranks 5th in the nation for number of dementia patients, which also means that we rank 5th in the nation for the number of caregivers. Dementia cuts both ways in our families, and we often feel unprepared to bear the burden. In my conversations with others, I often find dementia seems as a fate worse than death, being stigmatized with phrases like “loosing our minds” or “less of a person.” Those who are called to be caregivers battle the nonstop cycle of anger, guilt, shame, and repeat. Where do we go from here? How do we learn to live with dementia and to care for dementia? In this instance, Karen Martin provides an invaluable service to the Church.
Memorable Loss begins as a narrative account of two friends - Kathleen and Karen. Karen details her personal experiences with caring for Kathleen (several decades her senior) from pre-diagnosis to death. Along the way, she peppers her narrative with the most current medical research in order to provide readers with helpful insights into what is actually happening in those they love. Instead of detailing these entirety of their story, let me provide three truths which I have found helpful.
One, Karen does a fantastic job of destigmatizing dementia. The addition of the disease does not mean the loss of the person. Repeatedly, Karen emphasizes that we are more than our memories. Yes, Kathleen lost more and more of her memory as her condition progressed, but Kathleen never lost her emotive life. In one instance, Kathleen loses a life-long friend, so she writes of her passing in her planner. Every day, Kathleen would see the note and forget that she herself wrote it the day prior. Though her memory of the event was gone, the grief was real and tangible. In other instances, Kathleen may forget the names of nephews, but she knew of their care and concern for her. Down to the last days of her life, she retained her wit and humor. Kathleen may have forgotten her past and lost the ability to plan for the future, but she remained Kathleen in every present moment.
Two, Karen provides keen insight into Kathleen’s emotional life. When Kathleen realized she was getting dementia, shame and anxiety caused a normally vibrant woman to become reclusive. When going out in public, Kathleen would be fearful of her inability to remember places and names. For this reason, Karen would also introduce herself to spare Kathleen the embarrassment. Even after moving into a care facility, Kathleen longed to keep her routine of reading the paper and playing the piano. These were part of who she was. Though she never played a single time, the presumption of playing provided for her a level of confidence most needed in that time. Furthermore, as the dementia progressed, Kathleen would make requests and forget. When others would keep these forgotten requests, she would grow anger. However, the effects of dementia removed resentment, remorse, and guilt from her range of emotions. She simply could not remember long enough to be angry for long.
Lastly, Karen peels back the emotional layers of the caregiver herself. She openly addresses the feelings of guilt when playing Kathleen in a care facility and how these factored into the decision. She details the feelings of mistrust toward the care workers in the beginning and how hard it was to relinquish her role as Kathleen’s friend. Though she knew this was necessary, it did not make the parting easier. Another facet of their relationship is the not knowing what they didn’t know. Karen’s hindsight allows her to see missteps and misunderstandings along the way that provide caution flags for those who are currently caring for people now.
Memorable Loss is the saddest book that I’ve read this year, but it is the most helpful. Karen Martin does not allow dementia and the detrimental effects of sin rob Kathleen of her dignity nor us of our hope. She provides the helpful dose of honesty which we all need to care better. If you only read one of your pastor’s many recommendations this year, this would be the book of choice. You can buy it here.
