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Love's Last Measure: Lessons Found at Death's Door Paperback – January 26, 2016
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About the Author
Anne Cutter Mikkelsen has been a hospice volunteer and is an advocate for all people with Parkinson's. Her latest book, "Love's Last Measure: Lessons Found at Death’s Door", employs all the tools of compassion and insight she and her husband Mike gathered during their 30-year journey with Parkinson's.
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That is how Mike Mikkelsen, Dad, began the final, 15-month chapter of his life. And pay attention he did. Like the preceding decades of his experience with Parkinson's disease, Mike treated the dying process as a fresh experience, a challenge and an opportunity for expression. My step-mother, Anne Cutter Mikkelsen, was his partner and caregiver, and she documented the journey in a book, "Love's Last Measure: Lessons Found at Death's Door."
It is wondrous, spiritual, and informative without false sentiment. It's also a love story.
The book is Anne's fourth. It's obviously intensely personal for me. It also is the clearest depiction of the dying process that I have read – like seeing through Dad's eyes until the moment his spirit left his body and soared into the Washington state sunshine. It tells of a partnership, of mutual caring and giving, and parting when it was time to for him to take the journey alone.
It tells of suffering. This includes a previous brush with death due to ineptitude at a surgical rehab center, and a middle-of-the-night calamity set off by a smoke alarm malfunction that ended up with Dad falling and having a small stroke while his dog had an epileptic seizure on top of him
It tells of hallucinations both mystifying – spiders toting rainbow colored curtains – and comforting, such as healing time with his father and the companionship of three kind women who established an enduring presence on his sofa.
It tells of joy, in a dance around the living room the day after Anne spirited him away from rehab, and of a last spin on the open highway at the wheel of his beloved Dodge hot rod.
It is also deep in spirituality, through channels including his artistic vision, a hospice chaplain, and a hospice nurse.
Dad died aged 79 on Valentine's Day, 2013. His death on what had always been a special holiday to him was a gift to Anne. The book was a gift to me – it helped me know my father and step-mother better. It also was a gift to humanity.
Anne Mikkelsen's Love's Last Measure answers that question with a refreshing frankness all too rare in our death-denying culture. Subtitled “Lessons Learned at Death's Door” this book tells a compelling story about the journey the author and her husband Mike made together as his Parkinson's, cardiovascular disease, and dementia carried them to his last breath.
Neurologists condition patients and families to think about disease progression as a succession of stages defined by clusters of symptoms. The staging always ends with “advanced Parkinson's” but there rarely is any discussion about what this means to families. We all know Parkinson's has an endgame but too often it is engaged primarily through an uncomfortable silence among members of one's support system. The myriad decisions a family and patient must make as they travel this period are rarely clear-cut and are made under extreme emotional strain. This is not a part of the Parkinson's journey for which your neurologist can provide guidance. It requires someone who has traveled the path. Someone like Anne Mikkelsen, whose devotion during Mike's final years raises his death to a work of art.
By focusing on dignity and a search for meaning in the rhythms of severe Parkinson's, the author sculpts a plan of action in which her husband is an active participant despite cognitive debilitation. Moments like resisting the urge to help Mike through the painfully slow process of lighting dinner candles or finding their beloved dog Rueben a new home to keep both pet and husband safe, the author makes the difficult but predictable events of the endgame both palpable and sublime. Even the very decision to remove Mike from the iatrogenic scheduling rigidity of the cardiac rehab so that he could receive his meds according to the demands of his body, requires a commitment to the relationship not immediately apparent in marriage vows of “in sickness and health.”
Families dealing with Parkinson's at its most frustrating may find the author's pragmatic approach to freezing, falling, visual hallucinations, and worsening dementia helpful. Ultimately, however, Love's Last Measure teaches anyone dealing with a dying loved one that the relationship with friends and family paradoxically grows in tandem with the greatest loss. It is a story of creating ritual to help our loved one and survivors transcend the pain of death.
The chapters describing Mike's ultimate journey home are a poignant reminder that a creative approach to the process of dying binds a family with their loved one in a way none will forget.
The book itself provides comfort and guidance to families trying to find meaning in the final days of a loved one's life. It reminds us all that such moments can indeed be life-affirming.
Paul Short, PhD, Neuropsychologist, The Parkinson's Coach