Advanced Parkinson’s: a survivor’s guide to ‘transcending the pain of death’

Carers' Corner

Author: Dr Paul ShortPublished: 4 February 2016

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Anne and Mike Mikkelsen

Anne Mikkelsen’s new memoir bravely explores the challenges faced by carers and their loved ones in the final stages of advanced Parkinson’s – and offers invaluable lessons for families trying to find meaning amid the emotional pain, says neuropsychologist Dr Paul Short, AKA ‘Parkinson’s Coach’

How does a couple prepare for the final stage of Parkinson’s disease? After all, death and dying are never discussed at neurology visits, conferences, support groups, or on social media.

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.

Anne Mikkelsen arched greeters

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 Parkinson’s journey for which your neurologist can provide guidance. It requires someone who has travelled the path.

“Anne Mikkelsen’s 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.

“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.

 ‘Love’s Last Measure’ is available from Anne Mikkelsen’s website or direct from create space here

For more information about coaching sessions from Dr Paul Short, AKA ‘Parkinson’s Coach’ visit his website here


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