A living death

May 18, 2016 | Editorial | Volume 20 Issue 11
Dick Benner | Editor/Publisher

She is more than my spouse and partner of 54 years. She was my soul mate; the person whose love and devotion never faltered; the one to whom I turned for counsel, for wisdom and for comfort.

But now those dynamic dimensions are gone. My wife Marlene was diagnosed with dementia more than two years ago and is now in the hands of caregivers at a long-term care facility in Virginia. Our youngest daughter, Lisa, visits her frequently to stay in touch and to give her a sense of family. My grief is deep and troubling. While I visit her once a month while living in Canada, I feel that half of my life is gone, too.

The house is haunting when I return from work. The wall hangings, decorations and furnishings are constant reminders of the person who artfully filled the home with her classic décor and photos of family from generations past. It is a home without a voice, without a personality pervading the environment. Rooms ring hollow without the presence of the hostess, and an emptiness pervades and tortures my spirit.

The fact that her disease is degenerative is even more depressing. This is development in reverse. As a child develops, her brain expands and physical ability increases as she reaches adolescence and adulthood. Dementia reverses that process. Marlene will become more like an infant as time progresses.

My journey of grief led me into a tunnel of despair for several months. Watching her deteriorate one brain cell at a time sent me into an extended dark period, despite the reaching-out of close friends, family and a small group at church, who, at the initiative of my pastor, surrounded us with love and support, which included taking Marlene out to lunch or taking her on country drives.

Their sensitivity to her—and to me trying to cope with this new reality—was and is wondrously sustaining. I felt the power of prayer like never before. But there came a point when I felt I had to withdraw and take this journey alone. During the long winter evenings, I just sat by the fire and engaged memories of life in the past, the good times and the challenges—all the while listening to the classics: Bach, Mozart, Beethoven—music that couched those memories in the strains of orchestral selections that are enduring and beautiful. It nurtured my spirit in the midst of great loss.

Tears flowed frequently while reaching back in my memory to those times when two spirits blended into one as we faced all that life threw at us: the times of the physical reverses of cancer for both of us and a death threat from the Mafia when I exposed their operations through newspapers we owned in central Pennsylvania.

I recalled, too, the joys of those intimate moments at the adoption of our two children, the birth of our two granddaughters, the warmth of fellowship of small groups from various congregations, the support and engagement of congregations of which we were a part in some 14 different settings in the U.S. and Canada.

I took pleasure in the visual arts Marlene initiated at the Park View congregation in Harrisonburg, Va., and at Waterloo North in Ontario. She had a gift of enriching worship with the use of flowers, plants and appropriate art pieces that pointed to the Creator.

You might say this was all a bit of self-therapy. Grieving the loss of a spouse to dementia is a form of mental illness to which the church should pay attention. I have never been clinically depressed, but this new reality sent me into a tailspin that tested the strength and health of my mind and emotions. I lost weight and my energy level lowered considerably.

I am slowly facing a new reality, but it encompasses a living death, or what one of my friends describes as a “marathon funeral.” I am thankful that my family, close friends and the church continue to be there for me. This is a new ministry for the church in an aging population. Pastors and congregants will learn new ways of supporting.

They can do such things as my friends Ken Seitz, a retired pastor, and his wife Audrey do, visiting Marlene weekly and taking communion with her once a month. These are the gifts the church has to offer. Bless them for doing these acts of kindness.

See more in the Focus on Mental Health series: 
Guard your heart and mind
One way your church can stop hiding mental illness
Mental health awareness incorporates art and poetry
Depression resurrection
‘We all need counsellors’
Helping to prevent suicide
Leaders being equipped to build up the church
‘There is love in this room’
‘I am still holding out hope that I will be free of this one day’
Six steps for better self-care

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Comments

Thank you for your words of affirmation and caring, Luke. Much appreciated and strengthening. Yes, you have been a true friend over the years--worth its weight in gold.

The spring/summer edition of Crossroads appeared in my mailbox just today with a reference to you and Marlene in Mileposts, so I searched for this article.

I read your piece with a heart stab and waves of sorrow as I just lost my Aunt Ruthie to Alzheimer's. But she was 98 and I know Marlene is much younger. I remember your romance during college days and your specially sanctioned marriage before Marlene graduated - ha! I have written extensively about Ruthie's journey on my blog, calling it a long goodbye. The "marathon funeral" is also an apt description. I admire the care and candor I detect in your writing.

May you detect some light behind the shadow . . .

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