Alzheimer’s and the Husband #3 - Legacy

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 new blog post will be added each Friday.


It’s hard for me to think of myself as an octogenarian, albeit a “young” one. How can I have a wife who will soon turn 80 while sitting in a memory care facility unable to take care of even her most basic needs?

I guess that’s how an always turns into a legacy, defined as something no longer eternal but what is left behind. The passion, once emanating from what “we” created over 58 years, is now mine alone to sustain.

Is it worth sustaining? Is it worth valuing?

There would probably be enough legacy if both of us died today at the same hour and minute. Our sons and grandchildren would collect the memorabilia, pictures, diplomas, certificates of accomplishment, and other leavings of a lifetime dedicated to service.

Hopefully, those things could give comfort; that those of us who went before did more than live out our lives in purposeless and unproductive contentment.

Some people enjoy saying things like “life is what it is.” Shoulders are shrugged when that statement comes out of the mouth, as much as to say there isn’t any real reason for our taking up space on this globe. We are no different than other mammals who eat, breathe, reproduce, and die.

It is what it is. Sigh.

But I don’t agree with that assessment of our existence. I like to think human beings are an exceptional species with the talent, intelligence, and drive to create something approximating a Utopian environment.

In addition, human beings are Sensient creatures who can discern and therefore acknowledge a spiritual presence, one that envelopes us in the beauty and wonder of the universe.

It is important that those of us who choose service as a way of life ensure that every member of the species enjoys and grows from the power of nature, music, art, philosophy, religious belief and all other marvels of human achievement. 

A spouse who remains after death or the advent of Alzheimer’s, and who was once a member of a married team dedicated to service, has the responsibility to keep the dream alive. Even now, while in the last stages of Alzheimer’s, my wife will smile when I tell her about what I’m doing as a state AARP leader, or the author of a new book on school reform, or even the dabbling I’m doing in writing this blog.

What I hope is registered behind that smile is that my current efforts and accomplishments are merely a preservation of what the two of us started together.

The AARP thing is simply a continuation of studies and actions we took to support development of a university gerontology program in the 1970s.

The school reform effort was a commonly felt passion in the late 1960s, out of which ideas, journal articles, and onsite service activities were spawned over decades.

Even the writing of this blog comes from our determination to extend our influence through writing, workshops, and conference presentations.

True, there were more individually initiated goals, such as my wife’s dedication to helping church women assert leadership. And, as a terrific middle school science teacher, she inspired her female students so much that many of them fondly remember her even now.

I had little to do with those aspects of her service.  But I did provide strong and ongoing support for her efforts. I recount those achievements to her now, and she smiles and looks contented.

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I sometimes wonder if end-of-life afflictions like Alzheimer’s leave any discernable legacy of their own. My wife has been a resident of a small memory care facility for over three years. Before the COVID-19 pandemic I visited her in that facility every day. I naturally met other residents, staff, and family visitors. 

The symptoms of Alzheimer’s and other forms of dementia manifest themselves slowly and even erratically. My wife and I were both educators, so the workings of the human brain interested us. It is a remarkable organ, even when it starts to misfire and shut down. As a husband, I was especially interested in how Alzheimer’s affected an emotion like love.

I noticed that visiting wives and husbands always try to elicit some sign that their afflicted spouse still loves them. With few exceptions, the resident will respond in some positive way and try to reciprocate.

It may be a cliché, but it seems clear to me that love remains long after most other parts of the brain and personality disappear. It is a kind of final legacy. After everything else fades away, the love remains and is transmitted to others in the only way they can.

Over the three years my wife has been in the facility I’ve created a picture album, a family memory notebook. When I or staff members guide my wife through its pages she often smiles, or her eyes flash a little. I’m convinced that a memory was triggered somehow, emanating from feelings of deep love of family members and the joy they brought to her life.

What a wonderful legacy something like that leaves spouses and others in a family. That, after all the emotional pain caused by a disorder of the brain, the one afflicted is conveying love to everyone, saying that her life with them was worth even this kind of ending.

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Up to now I’ve discussed my relationship with Alzheimer’s Disease in terms of my wife and our marital relationship. It’s important I do that for my own mental and emotional balance.

But the legacy the disease leaves, by itself and in concert with social mores and expectations, is powerful.

I consider myself to be a responsible and moral man of 82, thankfully blessed with comparatively good mental, emotional, and physical health. Yet my current life sort of floats in a kind of Twilight Zone in which I, a married man, must live alone, be alone, and continuously stay true to my vows. Month after month, year after year. Social interactions must be casual because any kind of intimacy, in whatever innocent form, is seen by folks from my era as disloyal.

I’ve become a little resentful about those perceptions. I’m lucky to have the resources to ensure good care for my wife, and I’m attentive to her and my family. I know other husbands, and wives, who are shriveling up because of one-on-one caregiving responsibilities within the home. They sometimes wither and die before the afflicted spouse does.

Wives often develop a sisterhood among women, and that helps. Men do not do that kind of thing well with their buddies.

I know I don’t.

So, the next few blogs will explore that and other dimensions of Alzheimer’s and the Husband.  

What are your thoughts about legacy? Follow me for more posts about Husbands and the Alzheimer’s journey at www.stuervay.com.

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.

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