The Time to Dance

As the disease progresses, my mother loses her ability to keep herself occupied while my father is at the office.  Unable to read or even work the television, she spends most of her day roaming the house for something to do.  I work out a schedule between my part time jobs so I can spend Sundays and Mondays at my parents’ house, and I witness my mother’s routine.

My father turns on the kitchen television when he leaves in the morning, but my mother spends most of her time on the living room couch, watching attentively for the mailwoman to stop at the mailbox.  She recognizes the sound of the mail truck as soon as it turns onto the block, and she is out the door before she even sees it pull up to the curb. 

Every weekday at exactly 10:00 am, my mother’s sister, Nancy, calls long-distance from Texas to talk.  For over two years, Nancy asks my mother about the weather and what her activities are for the day.  My mother repeats much of the information from one day to the next, and as she loses the ability to make small talk, Nancy fills in by describing her agenda, movies she and my cousin have seen, and upcoming road trips her husband is planning.

These calls last only a few minutes, and most of the time my mother remembers to hang up the phone.  Then she flips through her magazines and picture books sometimes, but most often she lays on the couch and naps, frustrated that she cannot do anything else. 

When I visit, I ask her if she wants to do something else, and she answers in a low, frustrated voice, “I don’t do anything.”  As noon gets closer, she brightens up.  She moves her books to the kitchen table and waits for my father to come home for lunch.  We make lunch together and have a sandwich or soup ready.  When my father walks in the door, my mother stops whatever she is doing and watches him.  She smiles broadly and nods her head, repeating with energy, “yep, yep, yep.” 

When my father’s lunch hour is over, my mother stands at the window and watches him drive away.  She frowns in annoyance and says, “He always does that.”

My father makes sure the television is set to the station Ellen will appear on later, but my mother takes no interest until then.  She either takes a walk on her normal route or lies down on the couch—anything to pass the time until my father gets home at five. 

On the days I visit, we stay busy cleaning the house, running errands, or walking around the local mall.  These activities improve my mother’s mood, and mine as well, but I cannot stay as long as I would like.  When Tuesday mornings roll around, I explain to my mother that I have to go to work.  My mother shakes her head; her eyebrows raise and her eyes water.  “You always do this,” she repeats. 

“Mom,” I try to reassure her, “I’m coming back.  I just have to go to work for a while, but I’ll be back and Dad will be back and we will have a good time….”

She shakes her head more forcefully and answers in a low, firm voice, “No. You won’t.”

I continue my attempts to reassure her that I will return soon, all the while backing out the door.  Leaving her on these terms grinds on my conscience, and guilt follows me around for sentencing her to another week of isolation and boredom.  I practically shut the door in her face as she tries to follow me out, all the while begging, “Come back.”  She stays vigilant at the window as I pull out of the driveway.  I wave goodbye, but she does not wave back.

Her feelings of abandonment are a growing concern, and my father and I explore local programs for elderly care, but our options are limited due to my mother’s age and our family finances.  We use grant money from the Alzheimer’s Association to hire a companion for my mother a few afternoons a week, but we remain concerned about her daily activities. 

One bright spot, however, is the daily phone call from my mother’s sister. 

On the days I visit, my mother tells Nancy, “The same old, same ol’” before handing the phone to me.  Nancy always begins the conversation by asking how things are going.  I can hear the concern in her voice, and it seems like the distance between Nebraska and Texas gets longer as my mother continues to succumb to the disease.  I always assure Nancy that my mother is fine and that we are going to do something fun over the weekend.  Nancy tells me about how my uncle is settling into his recent retirement, and we both commiserate about the weather.  These seem like fairly topical points, but the conversation is comforting because they are things I would have discussed with my own mother. 

We talk around my mother’s disease, and for those few minutes on the phone, I can almost pretend it doesn’t exist. I want to tell Nancy how much her dedication means to the family, and how some of my fondest childhood memories revolve around the hour-long phone calls she shared with my mother. 

I don’t say these things to her, possibly because I can’t find the right words, or because lately I’ve noticed that remembering the past hurts more than experiencing the present.

On days that I am not at the house, Nancy still calls.  If my mother sounds upset or doesn’t answer, Nancy contacts my father at work to let him know.  I take this cue from her and call my mother between shifts.  I ask how she is doing and if Nancy called, and then what they talked about.  We have the same conversation at least twice, but I like to hear her voice. Before hanging up, I always tell her I’ll visit soon.

We follow this routine for over a year, and as winter gives way to spring, my mother takes a walk and does not come home.  The police find her, and the next morning my father takes her to a nursing home for the day.  Four days a week she visits the care center, and on the fifth day a companion stays with her at the house.  On this day, Nancy calls.

Soon, the summer heat takes over as our favorite topic of conversation.  As these months pass, my mother no longer picks up the phone when it rings, nor does she know to speak into it.  Her vocabulary diminishes faster than we notice, and she stops drinking fluids.  To keep her hydrated, we hold a glass to her lips and slowly tip the water forward.

As the summer draws to a close, we get a phone call from my uncle; Nancy is being hospitalized due to a massive infection.  A week later she is diagnosed with cancer, and two weeks after that she is gone.

Nancy passes away on a quiet Sunday morning.   My father takes my mother aside to tell her, but her face remains emotionless and it is clear that she does not understand.  My sisters are both at the house that day, and though we go through the normal routine of cleaning and driving our mother around, the sadness is palpable.  I question why this could happen and how, after everything we were dealing with already, could we remember happiness?

That evening, my father stands across from my mother, one hand grasping her shoulder while he holds a glass of water to her mouth with the other.  She takes a few sips and my father pulls the cup back to give her a minute to breathe. 

During this break, for no reason in particular, my mother swings her hips and moves her shoulders from side to side, dancing to a beat that only she hears. 

She keeps dancing as my father tries to coax her into taking a few more sips.  Even with his hand still on her shoulder, she swishes and sways to her song.  My father tries to mask his amusement by pleading with her to take another drink, but when my sisters and I notice what’s happening and start laughing, he gives up. 

We dance with her, even though most of the moves are made up and none of us share the same sense of rhythm.  For the next several months, whenever she is bored or doesn’t know what she should be doing, her hips begin to sway and she dances in place.  This simple gesture is a break in the usual routine, as if she is trying to say everything will be okay. 

Perhaps it is a coincidence that she begins dancing on the day she lost her sister.  I like to think that it is because Nancy is no longer so far away; she is now with my mother in spirit, and that’s something to dance about. 

Without really knowing it, my mother reminded me that no matter how bleak things can get, we should take every opportunity to dance and enjoy our time with loved ones.

*Author’s note: This started as a very different entry last year.  I spoke with Nancy about using her calls for a blog piece, and she said, perhaps somewhat surprised, that doing so would be okay.  Unfortunately, I did not get it completed in a very timely manner, and she was hospitalized before I had the chance to talk with her about it again.  I am not a fan of the contrived feelings “morals of the story” can convey, but recent events really have made me realize that we should take every opportunity to dance (or do something to laugh) and enjoy the limited time we have with those we love.