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Living with Dementia

My husband and I were shopping recently for a childproofing gate to keep our dog out of the utility room where our two cats have their food bowls and also a litter box. Fable, the dog, loves to go in and eat up their food (I’m sure we’re not alone in this). The woman at Lowe’s showed us some gates and we talked about needing to cut a hole in the bottom so the cats could go in and out but not our dog, who is the size of a German Shepherd. She looked at us and said, “You don’t have to cut a hole. Just position the gate higher in the doorway and the cats will go underneath but not the dog.”

What if we had to draw a fate card like you do in the old board game, “Life” and it had to come true?

My husband laughed and said, “Why didn’t I think of that?” and the woman said, “because probably you don’t have a 90-year-old mother with dementia living with you.”

Bingo. But since we also have a loved one in that situation even if not in our home, we chatted a bit and I left her feeling again the tremendous amount of work and strength it takes to live with someone in that condition. But millions do.

What if we had to draw a fate card like you do in the old board game, “Life” and it had to come true?

We do not choose our fates when it comes to certain illnesses—or even get a random draw. I’ve never been able to figure out whether it is better to go quickly at a younger age to heart attack or accident with no chance to say goodbye or put affairs in order; to have terminal cancer; or to have dementia—especially Alzheimer’s or Lewy body dementia.

Good thing we don’t get to (have to) choose.

By the time you reach your 60s you have probably experienced losing friends and family members to all of the above (although perhaps you’ve not heard of the last one; I’ll say more in a moment). For me, very sad situations revolve around Alzheimer’s or dementia. As a writer, I depend on my brain and mental acuity to make a living. More than that, all of us depend on our brains to navigate life. When the brain no longer works, life becomes treacherous not only for ourselves, but all those around us.

A new book out this month from Herald Press chronicles the experiences of one woman and her husband with Lewy body dementia or LBD for short. The book is called Relentless Goodbye: Grief and Love in the Shadow of Dementiaby Ginnie Horst Burkholder. Ginnie’s husband Nelson (still living) has Lewy body dementia which has some symptoms like Alzheimer’s and also like Parkinson’s. I was particularly interested in this book because a dear church friend of mine lost her husband to Lewy body earlier this year after dealing with its manifestations in their lives for a number of years.

Ginnie Burkholder starts out by telling us about Nelson before he became ill: he was a fun-loving teacher in his 40s who enjoyed playing with his children. Ginnie writes, “Nelson was strapping strong. He could carry two bundles of shingles up a ladder to the second-story roof as if it were nothing, so a little Frisbee football was no sweat.” In 1991, Nelson first experienced noticeable symptoms. “A small group from our church leadership team sat around a table to take a personality test, just ‘for fun.’ It was obvious that Nelson needed more help in following the directions than seemed warranted. I blamed it on poor sleep.”

But such things are very hard to diagnose. By 1995, Nelson had to quit teaching when his symptoms became too troubling.  

The book in many respects is stark and sad, but will likely be a solace to those living or having lost a loved one with any aspect of dementia.

On our radio program Shaping Families, Duane Sider also shared his experience of watching his father go through early-onset Alzheimer’s after having served as head of his denominational mission board in Canada. (See the April 21, 2012 episode at Duane said, “I don’t know whether the pain of what they have become is more painful than what they lost.”

Life is full of sadness, but also full of joy and love. Blessed are those who can see through their tears and hang on to the shreds of hope and care they can find. Blessed are those who stand by those walking these difficult paths.


For a free booklet, “Dealing with Dementia,” write to Another Way, Box 22, Harrisonburg, VA 22803 or email . For more on the book Relentless Goodbye, visit the MennoMedia store: or call 800-245-7894 U.S.; or Canada 800-631-6535.

Posted 5/24/2012 7:00:00 AM

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