Navigating the Many Challenges of Caregiving

I felt trapped and wanted to escape.

By

Susan Duhon

 
Published May 23, 2023
illustration of woman on boat navigating through hands surrounding the water
Elia Barbieri

My imagined future dissolved into fiction the moment my 46-year-old husband Roy showed symptoms of Alzheimer’s. A world once filled with possibilities narrowed into one lane, and I believed that I had no choice but to step onto the path labeled Caregiver.

Without a thought, I allowed the presumption of my duty to become my jailer. I would become a caregiver because that was what I was supposed to do. Even though I loved my husband and wanted to cradle him from harm, I felt trapped and wanted to escape. Resentment grew like a cancer within me.      

A few years later, I met Emma.      

Emma was a street-smart octogenarian counselor assigned to me as a part of my enrollment in a research study dedicated to caregivers at New York University. In an enlightening conversation, she led me to understand that today is not yesterday and that traditions can become shackles. Glass ceilings are shattered only when we take control of our own lives.      

We first met on a freezing day in a cramped office in what was then the NYU Silberstein Center for Aging and Dementia (now the Silberstein Alzheimer’s Institute). Emma leaned across her cluttered desk and silently stared into my soul for a few uncomfortable minutes before she began to speak.      

“So,” Emma said in straightforward New York-speak. “Your husband has Alzheimer’s disease. What are you going to do now?”      

“Take care of Roy, of course,” I responded.      

“No, what do you choose to do?” She asked.      

“I’ll take care of Roy,” I replied again.

She continued to push by repeating the question several times, with increasing emphasis on the words “choose to do,’ and for a while I continued to echo my original response.      

Finally, I cracked like a felon under the interrogator’s bright lights, and to this day I don’t know from where my answer sprung. I looked at Emma and said, “I want to go to Spain and take all the money with me.”      

Emma looked me squarely in the eyes and without betraying any emotion said, “Good. Go to Spain. No one is stopping you. Although you can take only half the money.”      

“But,” I sputtered, “who would take care of Roy?”      

“Someone,” she responded.      

“What would my children think if I abandoned him?” I protested.      

“What do you care? You’d be in Spain,” she countered.      

“No, I just couldn’t do that to him.”      

“Sure, you could, and he might be better off if you did,” she continued.

“Being a caregiver for someone with Alzheimer’s disease is not easy. If you became Roy’s caregiver, you would have the responsibility to become the best caregiver he can have. You must be willing to learn everything about the disease and how to best help him. You must develop a level of kindness and patience that you have never experienced before. You can never blame him for having a disease, and you cannot punish him for things he cannot help. If you are unwilling or unable to fulfill those responsibilities, then the best you can do for him is to go to Spain and allow him to receive the level of care and respect he deserves.”      

“I am going to take care of Roy,” I said, and this time my voice resonated with the level of commitment that she obviously sought.      

“Good,” replied Emma. “But now you know that you have made a choice to care for him. Never forget that you are choosing what you want to do. As such, you can never play the ‘poor, pity me’ card because you can always depart for Spain.”      

Emma worried that I was making a choice without understanding the severity of changes that my life would undergo. I am not sure that I could have realized that Roy’s losses and mine would go hand in hand or how quickly caregiving could become all-consuming. The greater Roy’s needs, the greater my responsibilities became.      

In the beginning, I had viewed being a caregiver as an unbearable burden, but I began to realize that our lives need not end with a diagnosis. I was able to lighten my darkest corners as a caregiver because I learned to redefine joy.      

Bitterness was banished, and wit and humor became my allies.

The thief, Alzheimer’s, could steal my husband’s abilities, but not our happiness. When Roy no longer remembered how to dance, we swayed to the music. Though, when his misbehaviors became so overwhelming and desperate that I had no breath I could call my own, I hired help and took gardening classes and joined a book club.      

I discovered enormous freedom by consciously choosing to become a caregiver. The journey was not without hardships; however, the realization that I was the pilot of my own ship allowed me the serenity to appreciate a depth of living that I might have missed.

Upon Roy’s death in 2012, I reopened my world without guilt or regret. Since then, I have traipsed across four of the seven continents without carrying a burden from my past but buoyed by its existence.      

I didn’t go to Spain because I no longer needed to escape.

Is anyone out there a caregiver? How is it going? How do you practice self-care? Let us know in the comments below.

Susan Duhon was a caregiver for her husband who suffered from Alzheimer’s Disease for more than twenty years. CBS Sunday Morning News featured their story in 2000 and revisited them in 2004. Prior to her retirement, Susan was an award-winning educator and led support groups for military spouses. Today, she speaks to caregivers and is an avid traveler, reader, and author. She and her late husband have two children and four grandchildren.