The Pandemic, Alzheimer’s, My Wife

The following article was published in Pen In Hand (a publication by the Maryland Writer's Association) in July 2021:

Assisted living facilities and nursing homes have been hit hard by COVID-19, resulting in total lockdowns with residents and families not able to see each other, some residents even dying under such isolated and lonely circumstances.

My wife Mary was diagnosed with early-onset Alzheimer’s disease more than eleven years ago and has been living in an assisted living memory care facility for almost nine years. With my wife not being able to communicate verbally for several years, before the pandemic we had reached a level of nonverbal connection that surpassed what we could ever accomplish verbally…but it took physical contact and being together to hold each other, look into each other’s eyes, dance, smile and laugh, sing and hum together.

I had built up our relationship over these years, seeing her almost every day, helping her to have good days and know that I was still “with” her. She knew I loved her and was always happy to be with me. We had good times together and I know these daily interactions kept her “going” and interactive.

Then it happened…quarantine due to the coronavirus… and we could no longer be with each other at all!

It was over a year that she and I could not be together in any meaningful sense. This caused me a lot of anxious ruminations…Without our personal time together, would she now go downhill more quickly? What might she think about my not being there for her? Would she even remember me when I was able to return? What if she became infected with COVID-19?

I’m sure it was especially tough on Mary since she couldn’t understand why she was always in her room or alone at times, or probably wondered why she might not recognize her caregivers because of the masks. I almost hoped she was oblivious to the fact that I wasn’t there, but I knew she had to miss my visits. There was no way she could comprehend any of what had changed.

I didn’t worry about her safety and needs because I knew she was well taken care of by the caregivers and other staff. I also realized they were doing everything possible to ensure her happiness under the circumstances. I deeply respect and truly admire these people. But I worried about the absence of additional physical and emotional happiness I had always brought her on a different level, a void that only I could fill.

Mary and I had been unable to have any kind of real verbal conversations for years, but nonverbal communications were developed over the years to the point we communicated our love and emotions more visually and physically.

I arranged for caregivers to call me to “talk” with her on a regular basis during the quarantine. She often hummed louder and tried to become more vocal when she heard my voice. We video conferenced a few times. Sometimes she seemed to look at me on the screen for a few seconds, but like with the phone, she seemed confused, and I knew she needed to be with me physically to experience the special loving feelings we had shared.

Eventually, a handful of opportunities were allowed for me to visit her outside with six-foot social distancing and masks. She also wore a face shield. These visits had to be during the day and she was sometimes “out of it” because she often wanted a nap during that time. Whether she really “knew” me during these times I’m not sure, but when she didn’t have her head down she seemed to at least acknowledge the company.

Finally…after more than a year, and now that she and I have both been fully vaccinated, I’m allowed to visit her in her room after I get a temperature check at each visit. Appointments are needed for the caregivers to adjust their schedules, and I now visit her at least every third day, at the same time I used to stop by each day on my way home from work. Catching her after she finished eating dinner but before she got ready for bed was always the best time for her.

But a lot has changed during the year or so I was away.

Physically, she can now do nothing for herself. Before the pandemic she fed herself, albeit not in a socially acceptable manner—now she has to be fed. Previously I walked her some every day, slow as it might be—now two caregivers are required to move her from one chair to another.

When I first returned to visit, I noticed she had also gone downhill mentally, exhibiting very little reaction or interaction with me. I’ve now visited in her room about a dozen times, and at least this is getting better. She seems happy to see me. She would also be pleased if one of the caregivers, whom she has always loved, gave this length of undivided attention, but I believe I make a difference for the moment. She leans forward in a positive way, seemingly wanting to connect better, and occasionally reaches out to touch my face. A sad part for me is that it seemed she had lost the ability to smile, but glimmers of smiles are coming through the more I’m with her. Her smiles meant everything to me before the pandemic because I knew they were true signs that she was happy as she had lost any ability to fake a smile.

She hasn’t been able to talk for years, so there are no words except for a sporadic “okay,” usually after I say “okay?” in a questioning manner. I talk to her and sing the same songs I’ve sung to her for years. She and I both hum a lot. I do so with different melodies she used to know. She hums most of the time, usually back and forth between two notes. I can tell she’s happy by the way she hums, especially when she moves her hands and feet back and forth to the rhythm.

How we really connect though is through our eyes. A few years ago, we seemed to have a renewed love affair. We couldn’t communicate verbally, but the nonverbal connection was fantastic. She looked deeply and penetratingly into my eyes for long periods, seemingly trying to see my inner soul. It worked, and we had great love sessions through our eyes. Now, after the lockdown, she still looks deeply into my eyes, seemingly trying to understand me, but I can tell her gaze also means “I love you.”

I call her after she’s in bed most days that I don’t visit. A caregiver puts the phone on speaker and places it between her ear and pillow, and we “talk” for an hour or so. She’s very exuberant and “talkative” during these calls and hums a lot. It’s obvious that she’s happy. The nice part is that I’m told she’s usually this way also when I’m not visiting or on the phone.

Mary prepared her heart, mind and spirit for years before developing any signs of Alzheimer’s since she knew the chances of her getting it were increased by her family history. The peace of mind—and I believe true happiness—that she currently exudes are proof that her preparation worked.

At this point, she’s happy in her own space without a recognizable care in the world. She realizes and enjoys the care and love from her caregivers…and me. And despite all of the additional challenges it caused, COVID-19 can’t take that away.