Alzheimer’s and the Husband #4 - Loneliness

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.

As I said earlier, I’m working through what seems to be an unending Twilight Zone. It is an emotional period characterized by a relationship schism.  Death is not final, but its potential is mentally and emotionally omnipresent.

It is a strange kind of loneliness, somewhat different than what others suffer. That doesn’t mean I’m unique. But I think about it more than some. As an AARP state leader, I join my associates in studying the problem, seeking ways it can be mitigated.

Loneliness has reached epidemic proportions. That is not an idle observation. Health officials prove it is a scientific fact. It is so severe it kills Americans at a rate equivalent to those who smoke 15 cigarettes a day. It is so pervasive that organizations like AARP are studying it and supporting attempts to overcome the problem.

Now we have a viral pandemic, social unrest due to egregious past inequities, long simmering economic disparities that are growing into cultural disputes, and social support systems like education that are in disarray.

On the surface, all these disruptions to life as we knew it aren’t relevant to the loneliness epidemic.

On the surface, our current turmoil isn’t directly related to the loneliness of a husband who cares for a wife with Alzheimer’s.

But underneath the surface are little things like not being able to visit my wife at her facility, not interacting with the people who care for her, and not hosting family visits in which birthdays are celebrated and pictures taken.

Further under the surface are feelings of disorientation when society as I thought I knew it seems to be unraveling.  There is the possibility of a future quite different than anything my wife and I knew, or I now remember. What I considered to be always, passion, and legacy are now buried in a very blurry present, with an even less visible future.

And that makes me feel even more lonely than before.

Where is that wife with whom I could share my fears and possible ways of dealing with a changing world?  Together we worked our way through Cold War concerns and my possible military deployment in a major confrontation with what was then the USSR. There were Vietnam controversies, agitations of the 1960s’, and other challenges that ranged in scope from monumental to mundane.

In those days, with all their upheavals, I don’t remember being lonely. Even if my wife and I weren’t physically together for a while, the relationship’s aura was amazingly pervasive. It supported a feeling of confidence and tranquility as we wove our way through a life filled with both amazing opportunities and challenges.

My wife is still with us physically. But that “aura” is gone.

Other people, as nice as they are, can’t replace it. Governments, organizations like AARP, community senior centers, casinos, bingo parlors, country clubs, and retirement homes aren’t enough. And other attempts to make senior citizens comfortable and temporarily entertained or diverted don’t work for me. Not even sports.

And, although religion has always played a powerful role in my life, something is lacking there too.

Maybe it has something to do with a search for meaning.  I vividly remember a time when my wife and I went out for ice cream while the kids were in school. Together we had achieved a milestone in terms of degree completion, and I had accepted a job in another state, one we knew nothing about. Like many other couples in similar circumstances, we were both excited and nervous about taking the road ahead.

My wife then said a strange thing.  She said, “I feel like my job is over.” That remark made no sense to me. Then I realized that, during the previous ten years, the meaning of her life was to support me in my quest to find a position that could launch me in a direction I’d always dreamed about.

Sure, she was an essential part of that effort, but until that moment I didn’t realize how tangential she felt her role was. The internal mechanism of the pact we made to serve education was working well, but her part of the deal up to that point was peripheral.

Now what? What was her new role in accomplishing our goals?  She needed a better picture of what the meaning of our lives would be from that point forward.

At that moment, over bowls of ice cream, we adjusted our relationship and embellished on the original “service” reason for our union. We tweaked it. We defined its component parts. The whimsical meaning we once gave our allegiance became more defined and realistic.

More focused. More mutually supportive.

I crave that mutually supportive kind of meaning right now.  I long for another opportunity to eat ice cream together and search for a more definitive meaning for our union. But all I have left of that union is a legacy that doesn’t exactly fit today’s situation. All I can do is continue the search for meaning on my own.

My recently completed book on school reform should have meaning. But that was written before the pandemic and social unrest. Does it have meaning now?  I don’t know.

An AARP project to help both young and old rethink the meaning of aging is in development. But I had to make sure it can be instituted virtually. Will that work? I don’t know.

My little church gives me emotional and spiritual support, but the pastor and wonderful members of the congregation are not always able to help me find the kind of meaning I’m looking for. How could they? They want to love me like I love them as Christian brothers and sisters.

But their milieu is not mine.

Some can only imagine what my care giving situation is like. Few of them can share the type or level of meaning my wife and I subscribed to. But I appreciate their thoughts and prayers.   

In the next blog post I’ll address a variation of loneliness known as aloneness. Many have already read or written about the differences, so you may believe one is negative and the other more affirming.

My thoughts are similar but with a twist.

As a man accustomed to almost ongoing engagement not only with my wife, but with others committed to changing the status quo in education, the aloneness so often revered by women is much less appealing to me.  I’ll explain why.

What are your thoughts about loneliness? 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.