Welcome to Never: This Daughter’s Long, Strange Trip Back into the Fold (Year Three)

2005/ Year Three of Alzheimer’s

I’m beside my mom on her couch.   “I’m in a long, long lost place,” she tells me.  I’m often surprised when she can verbalize how she’s feeling.  I put my arm around her.

She doesn’t remember that she fell down the bottom three basement stairs and bruised her tailbone, at least a month ago.

She says, “My tailbone hurts.  But I didn’t do anything to it.  I don’t know why it hurts.”

“You fell,” I tell her.  We had almost this exact conversation yesterday and the day before.

“I don’t remember falling.  When did I fall?”  It always comes out accusatory, as if we’re telling her some fantastic lie.  Yes, you did take Tylenol.  You’ve been sitting on the heating pad for weeks.

“But I don’t remember,” she says in a mournful voice.

 It’s two in the afternoon, and I don’t know if she’s eaten all day.  She’s had an upset stomach for weeks—it’s her many medications or her many neuroses.  Each day my dad and I have to coax her into eating something: ice cream is often an easy sell, along with crackers or bananas. 

I’m holding a small plate of four soda crackers on my lap.  I give her one and hold another in my hand, on deck, as if I have to have it perched and ready to go in order to get her to keep eating.  Isn’t this how I once fed my six month old?  Just keep the food coming.  Now she nibbles the edges of her cracker, all the way around.

 “I hope I don’t forget you,” she says.

“Well that’s why I visit every day.  So you don’t forget me.  Forget one of those other rotten kids of yours.”  I laugh.

I can’t tell her that eventually, of course, she will forget me.  And all the rest of her eight kids and sixteen grandkids.  And her husband. 

She doesn’t need to know that today.  I hand her another cracker.

Angle from my mom’s couch: our feet.

~

Our relationship is simpler now that my mother does not criticize me.  I show up to visit her every day, and she praises my hair or my outfit.  She’s given me more compliments in the last year than she has in my entire life.

I was her “change of life” child, the youngest by many years, a surprise when she was almost forty, and she lingered over me, wanted me for her little one always. 

Babies and children my mother understood and treasured above all else, but young adults she bombarded with a flurry of “shame on you” or “didn’t you learn anything in Catholic school.” 

Her rules were too much for me, so I lived a double life: smiled and nodded at home and played the role of dutiful daughter, then wife.  When I separated from my husband and moved out of my marriage home, my mother told me I must be possessed by the devil. 

According to her, I would still be married if I had kept the Ten Commandments, sent my son to Catholic school, and gone to church more regularly or if I had not kept my maiden name, not gone to graduate school, not worked so much, not written a book.  Each time I saw her she added another one to this list of shortcomings.

How could I possibly respond?  I hid from her.  For years before her diagnosis, I saw her only on holidays, though we lived just miles apart.  For years, I NEVER believed we could have a relationship again. 

“Welcome to Never,” I think when I pull into my parent’s driveway each day. 

Today as I her put her socks on she says to me, “No one ever took such good care of me.”  I have to I go into another room and cry. Caring for her, a gift I thought I was offering my mother, is really one she’s giving me.  As she’s slipping away, I adore her more than ever.

~

Often when I visit, I bring my mom treats: a Dilly Bar, a peanut butter cookie, fun sized Snickers—even just microwave popcorn—and it’s the best thing she has ever tasted.  We sit close together on the couch, have snacks and cuddle.  Sometimes I drape my legs across her lap, or I wrap my arms through hers.  

All winter she sits in the same place on the couch and looks out the window.  She tells me she watches that boy down the street, one in a green snowsuit and a yellow hat.  At first I think she is hallucinating again.  She often sees people, usually children, who aren’t there.

“Look,” she says to me one day, “you can see him playing in the snow.” 

I get up and look out the window.  Three yards down the street is a green fire hydrant with a yellow top, about the size of a little boy.  “Oh sure, now I see him.”  Green snowsuit, yellow hat, just like she said. 

One day she says to me, “That little boy is playing too close to the street.” 

Another day she says, “That poor boy always has to play alone.”

My mom sits on the couch and looks at this little boy for part of every day.  She’s lost her mind,  but she has the same worries as any parent: Is the kid safe? Does he have playmates?  She can’t stop being a caretaker.   

Finally it occurs to me to embellish.  “I see another kid playing with that little boy,” I say.  “Look—do you see him?  Maybe he went behind the house.  Don’t worry.  That little boy isn’t alone.”

One day I say, “His mom is calling him in for supper.”  I realize I have the power to calm her with the stories I tell. 

~

My mom breastfed all eight of us and read to us while she nursed.  Though she was not much of a reader herself, she made it a priority to read children’s books out loud to all of us, and she was convinced this was why we did well in school.  When we were newborns, she licked our faces and bald heads like a mama cat, a quirk that I thought was creepy when I heard her talk about it, but a craving I understood as I nursed my own son.  You love this chubby lump of flesh so much it’s almost impossible not to lick.

When I was in first grade, my mom volunteered in my teacher’s classroom, I’m convinced because she was lost during the day without me.  She stayed in first grade for eight years, until Mrs. Krumenauer retired.  Each week my mother would come home with a story about a six or seven-year-old, one who came to school tired or dirty or smelling of piss.  Or one who didn’t get enough attention at home, one whose mother worked (God forbid) or whose father drank too much after work. 

“I want to bring him home with me,” she’d gush.  My mother’s sense of empathy for lost or forgotten children of course stemmed from her own childhood—her mother died of cancer and her father was run down and killed in front of the family farm all before she was ten.  Her older siblings, some married and some bonafide bachelor farmers, took care of the younger ones.   Beyond dirt poor before her parents died, she had nothing that was hers alone nor anyone to treasure her alone before or after they died. 

I used to think she could only love babies and children, not the adult I was becoming.  

~

 My mom is on the living room couch again, still in her nightgown, though it’s early afternoon.  I suspect her upper denture has been soaking in a cup on the bathroom countertop since last night, enough food particles that it looks like a mug of teeth and vegetable soup. 

She’s lying on a folded striped bath towel.  When I ask her about it, she says that she’s not taking any chances: “I don’t want to shit on the couch.”

“Do you have diarrhea?” I ask her.

“No,” she says, “but I’m not taking any chances.”  Without her upper partial, “chances” is slurred.

Her glasses are on the chair beside the couch.  She must have been dozing when I came in.  

I sit at the end of the couch by her feet.  I used to sit across from her, in my own easy chair.  Often on my daily visit, she says to me, “I just want to look at you today.”   I have recently gravitated to her couch, learned to ignore her body smells and get as close as I can, sometimes sitting so near her that our legs touch.  She likes this contact, stares into my face and comments on my eyes or my hair.  Today, I nuzzle up and tell her we have to have a “plucking day” so I can take care of her chin whiskers and her eyebrows.  She likes to be cared for in this way.  Attention is love, and she’s rarely gotten enough.

She says, “I’ve never felt like this before.  I have a headache, and I’m dizzy.  I almost gagged when Dad made chili.” 

She has no memory of the past two weeks, at least, lying in this same spot with the same symptoms.

“It’s heck to get old,” she tells me.  “I didn’t think it would be like this when I was such a Dancing Dar.”

I laugh and laugh, till she does, too.  I have no idea what a Dancing Dar is, and it doesn’t matter.

I try to talk her into getting dressed, putting in her teeth, and sitting outside with me on the swing.

“It’s not a getting dressed day,” she says.

She looks me over again, as she does every day, and asks the history of each clothing item.  She knows I’m a scavenger and a bargain hunter, something I learned from her.

I’ve come straight from my office, so I’m still in my black slinky skirt and a black t-shirt with the name of a magazine I sometimes write for.  I’m wearing black motorcycle boots. 

“Is it winter?” she says to me.  “You think it’s winter? Why do you have winter boots on?”

“I love these boots,” I say.  “I wear them year ‘round.”   I wag my foot in her direction. 

She says, “I can’t look at you without getting hot.”  I laugh.  This is what she used to say to me when I was a kid, wearing two necklaces  and three bracelets in 90 degree heat.  I stand up and dance around in front of her and kick my boots up in a Patti move that’s part square dance, part 80’s dance party. 

She giggles.  I sit back down, and I tell her about my yard, what flowers and bushes I’ve planted.

“I don’t remember your house,” she says.

“It’s okay.  You’ll come and see it when you feel better.”

“I can’t look at your boots without getting hot.  You think it’s winter?”

I stand up and dance around in my boots again.  She giggles some more, covers her mouth with her hand to hide her missing teeth.

I say, “I’m going to wear these every day this summer just to get a rise out of you.”  I sit down next to her.

“You think it’s winter,” she says.  This time it’s not a question.

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About Our Long Goodbye

I am a college teacher, tutor program coordinator, kidney donor, and dumpster diver / recycler extraordinaire. My stories, poems, and essays have appeared in Salon Magazine, Women’s Studies Quarterly, Journal of Developmental Education, The Wisconsin Academy Review, The Southwest Review, HipMama, Inside HigherEd, as well as other magazines and anthologies. I am the co-author (with Bruce Taylor) of Higher Learning: Reading and Writing About College, 3rd edition (Pearson/Prentice Hall, 2011) and a poetry collection, Love’s Bluff (Plainview Press, 2006). You can reach me at seepk@uwec.edu.
This entry was posted in Aging Parents, Alzheimer's Disease, Caregiving, Generation X, Sandwich Generation, Terminal Illness. Bookmark the permalink.

3 Responses to Welcome to Never: This Daughter’s Long, Strange Trip Back into the Fold (Year Three)

  1. Barbara Tzetzo Gosch says:

    This is such an incredible story. Reading about both your mother’s parents dying the way they did and so much else. And the way you become engaged with your mother during her illness. Your spirit is amazing. I’m going to quit and write in my Journal now.

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