Alzheimer’s and the Husband -- ALWAYS
Editors note: Dr. Stu Ervay is a member of the AARP Kansas Executive Council and a volunteer for AARP Kansas. In this blog, he shares his experiences as the husband of his wife of 58 years who has been diagnosed with Alzheimers.
A young woman and man begin their magical journey together as a couple. They date, court, commit, and vow to love and care for each other always.
Always.
It has a nice ring to it. Kind of like eternally. Similar to a fairytale in which the prince and Cinderella live happily ever after.
Neither of them will die.
And if one gets sick or injured, the other will mend the wounds, and whisper words of comfort, expressions of eternal devotion, and declarations of unswerving fidelity.
We all need beautiful aspirations. Relationships, no matter how they begin, are founded on hope and a faith that somehow the fairytale will come true. It’s possible none of us would enter any relationship if hope didn’t exist.
We must have faith that something in our world, such as its maker or guardian, will watch over us and help us be exceptional. Faith in the good thing that comes next is the root of our happiness.
As time passes in our relationship, we realize exceptionality or even survival requires more than the loving touch of a power beyond our knowing. Relationships are what we work to make them.
And, unfortunately, there is nothing physically eternal about them. All living things, and the conditions in which they exist, will ultimately fade away and disappear. That’s the deal.
That’s the deal is what the wife of C.S. Lewis said to him as together they worked their way through her cancer and eventual death. To capture and hold on to every minute. To accept the fact that living our lives to the fullest is not for the faint of heart.
We simply do the best we can for as long as we can. And we’re grateful.
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I’ve noticed that blog posts are rarely written by men. Especially men my age. But at age 82 and in a marriage of nearly 58 years, I’ve learned a few things about faith, love, loss, caregiving and the real meaning of loyalty and devotion.
What I’ve learned includes, but also transcends religious beliefs, social mores, community expectations, and the real meaning of commitment. I’ve also come to understand my own gender-related behaviors as they pertain to grieving, seeking solace, and searching for the support and understanding of others.
Why have those revelations hit me now?
Because Alzheimer’s gives new meaning to the word always. It hatches and festers out of sight, then continuously emerges from the inner workings of what was once a vital and active mind. It resolutely seeps into a personality, coming to the surface unexpectedly, taking on bizarre shapes and behaviors.
At first, I didn’t recognize it for what it is. But it is an ongoing presence that doesn’t go away. It convinces everyone who loves the afflicted person that it is perpetual and pervasive, until death stops its steady march.
The years slip by. Years once set aside for travel and discovery. Instead they are increasingly filled with opportunities for the “one” to be a loving and competent caregiver, doing all that can be done to spark an old memory or new awareness. A routine is maintained, yet surprises are expected and planned for.
Often, my wife is puzzled by my behavior, the kind that requires me to put safety locks on doors, hire people to stay in the house when I run errands, and incompetently prepare meals when everyone knows I’m a lousy cook.
Alzheimer’s insists that I, the other one, make decisions I don’t want to make. Decisions must be made independently in a home in which decisions have always been arrived at together.
Pillow talk if you will, about children, careers, beliefs, ambitions, and a multitude of other topics that are both intimate and guideposts for the future. Rarely do pillow talk and discussions over breakfast result in stupendous outcomes.
Sometimes they do. But that’s not the point.
The point is that life and how we live it is a “we” thing that entirely excludes other discussants. Other perspectives often fall into the category of “none of their business.”
Sure, exceptions can and should be made when children are involved. But even that dynamic is one in which the loving couple invite and encourage mutual collaboration.
Alzheimer’s builds walls that seem to have a life of their own. Sometimes they seem to shrink, only to grow an hour later. Rationality becomes a kind of oxymoron, like saying that people afflicted with dementia think logically.
Sometimes they do and sometimes they don’t.
And when they don’t the one who in the past was the other half of “we” becomes confused, and sometimes even angry.
It doesn’t help when an outside observer, compassionately motivated or not, says “she can’t help it.” Of course, she can’t.
But where did that woman I married go? Where is the woman who stood up and said “always” like I did?
Is “always” a lie?
As a man who enjoys reading history, I know that vowing to remain forever as one body was plausible during eras in which earthly life spans were comparatively short. The afterlife was accepted as everlasting.
It made sense when people depended on marriage as an inviolable foundation for survival in harsh cultures and challenging times. Death was just around the corner and, when it did come, was usually swift and a gateway to heavenly bliss.
Welcome to the 21st Century, an era in which nothing is fixed in the realm of faith, the nature of unconditional love, or in distinguishing between fairytales and real life. Technology, medical science, advances in biology, and the growth of social media give “always” a new look.
And sometimes that “look” is harsh and unsettling.
In subsequent blogs I will discuss my life---as a husband living with a wife’s Alzheimer’s---in ways that might help others who are now, or will have, similar experiences.
Follow me at stuervay.com if your “always” has encountered Alzheimer’s. In the meantime, seek ways to take care of yourself.
©2020 Stu Ervay - All Rights Reserved
Stu is a retired university professor and consultant to public schools. Prior to his work in higher education, he served as a unit commander in the United States Army, and taught history and government in secondary schools. Since retirement he has written journal articles and a book on school improvement. He is now a state AARP volunteer leader. His wife, Barbara, is also a retired educator. In addition to many years of teaching middle school science, she played a significant role as an advocate for women in church leadership.
