ALZ and the Work of Women

When I ask her whether she wants me to pick her up some brown or yellow mustard, she asks me to explain the difference. I forget that the simplest of questions aren’t all that simple anymore.

I come home and make up a batch of homemade pudding.

I held the realities womanhood close to my chest as I folded laundry, as I stood at the sink for nearly an hour, my hands submerged in greasy, lukewarm water. I made up Mamaw’s bed as the snow whirled about outside, thinking about the weight of all that is on my shoulders—the weight on so many other women’s shoulders.

I thought of Mamaw. How she lost a daughter in a car accident. How she lost her own mother to Alzheimer’s, lost her sister to ALS. How she now sits in her chair, losing herself, her independence, to the same monster who took her mother. We know that ALZ affects women more often than men. 65% of those living with the disease are women. She knew it was coming. We found the articles she clipped, the mail-order memory pills with one or two taken, the rest discarded.

I didn’t know how it would affect me.

60% of those caring for those with ALZ in their home environment are also women. When you delve deeper into the statistics, women take huge blows in both their work and personal life. 22% of women caregivers take a leave of absence while 16% quit their job. I am a statistic.

When you take into account the fact that today’s women caregivers are part of the Sandwich Generation, both raising their children and caring for their parents (or, for us, their grandparents), it’s not surprising that the depression rates in caregivers is also higher than that of the average population. Trying to shuttle the boys to and from their activities and attempting to bond with them as best as a parent can with tweens while also providing care and worrying about the health of Mamaw is… difficult. At best. Though articles and statistics on the Sandwich Generation are still only quoting information about Baby Boomers, not yet acknowledging those of us in Generation X who have been shoved quickly and unexpectedly into these roles.

I always like to be on the forefront, forging a way where there was no way. Just kidding. Constantly doing everything in this way is really exhausting and isolating, but forward is the only option.

I ask her questions she can’t always answer. We’ve lost some of her history, our history. She can tell me about her parents, but her grandparents’ names are gone. She sat and told my husband all about the watch she got many years ago, but she doesn’t know what she ate for dinner yesterday. Gramps struggles to understand what it all means while balancing things he never had to care for before; she was the woman and she did it all.

I do what I can when I can for her, for him, for these members of my family. Family takes care of family. Always.

A year ago at this time, I didn’t know I’d be here, a part of these statistics. I didn’t know how quickly she was slipping away from us, that she would soon fall. I had no clue what awaited us. And however exhausted I am in dealing with this, in supporting this slow process of dying, I feel honored to be here.

I kiss her head as we get ready to leave, our jobs done for the day. Thanks to the hospice aide and nurse, her hair smells clean and fresh, and I give thanks for their dedication and work, their heart for care. They say it takes a village to raise a child. It also takes a village to usher a soul home.

 

 

As a reminder, I’m running the Pittsburgh Half Marathon in honor of Mamaw. I’m raising funds for the Pittsburgh ALZ All Stars. If you can donate something, I’d be honored.

Caring for Grandma(s)

I spent a lot of time with my Grandma. My parents worked, as did many parents in the 80s. We were lucky, though, all living on The Farm together, my front door no more than a stone’s throw from my grandparents’ home in those early days before my parents built the new house up on the hill.

Once I started school, I would race off the bus at the end of my day, tearing up the gravel driveway just to get to Grandma’s house. She’d make us a snack. White bread and salami, sometimes with banana peppers and brown mustard. Sometimes cookies.

It was just us then, and a dog or two depending on the year.

Grandpa wouldn’t be home until after work. The eldest of all the grandchildren by eight years, I held her attention in the palm of my hand for almost a whole decade. It was just the two of us watching movies and Murder, She Wrote, making dinner and sneaking tastes.

Just the two of us.

When she went into hospice, I resolved to visit twice per week. I didn’t care that I lived two hours away; family cares for family, I said. I would read to her from her favorite books. I’d take her dog to visit. I’d sleep overnight on the nights my husband didn’t work at the fire department just so she wouldn’t be alone. I was going to be there for her like she was there for me.

My grandmother died just over 24 hours after entering hospice. She went to sleep on the first night there and never regained consciousness.

I never got to do those things for her. I held her hand and said goodbye, yes, but she was already gone. I didn’t get to care for her the way I wanted to care for her, the way she cared for me all those years.

I’ve been going to my husband’s grandparents’ home three times per week for two months now. I wash a lot of dishes. I strip the bed, do the laundry and remake the hospital bed that now sits in her bedroom so she’ll have a safe, clean place to sleep. I run the vacuum which terrorizes the cat she so adores, but it also makes her giggle a little and, well, we need some laughter right now. I take out the trash and take out the trash and take out the trash—in the freezing cold. I clean the bathroom with rubber gloves.

And I sit with her in between loads of laundry or while greasy pans that cooked pork side soak in well water that never quite gets hot enough. Sometimes she has a good day. Sometimes it’s not so good. Often, she’s somewhere in between. She couldn’t work the remote very well today; sometimes she confuses the remote and the cordless phone. So I helped her find Dr. Phil after a bunch of “no, not that” answers. She seemed pleased, which pleased me.

She’s not my grandmother, but she is. Fourteen years ago, she met me after I was already engaged to her only grandson; a grandson she spent just as much time with as I spent with my grandmother. She invited me into her home and into the family, no questions asked. If he loved me, I was good enough.

So I drive 40 minutes, one way, three times per week to clean, to sit, to make sure she has enough to eat. I run errands, sometimes twice to the same store in one day. And when I walk in, the stock boy says, “I have deja vous.” And I simply reply, “Me too, kid.” I try to do little things, like put up the Christmas tree even though she doesn’t remember who did it three days later. I did it knowing she wouldn’t remember but that it would make her smile.

She forgot me once. I cried. She also forgot our youngest once. I cried about that too.

I cry a lot lately.

I show up to care for and love on Mamaw because I love her. I also do it because I didn’t get to do that for my own beloved Grandma. I drive down to the river and love on both she and Gramps with the physical manifestation of my time and my elbow grease because I believe the gifts of our time and our energy matter so very much. Maybe even the most.

Every day when I pull on my puffy coat and prepare to head back out into the single-digit cold temperatures, prepare to drive back across the rolling hills and bendy roads through tear-blurred eyes, I bend down to her chair and kiss the top of her head.

“I love you, Mamaw.”
“I love you, too.”

Caring for Grandma(s)

Follow Her

I grabbed Never Coming Back by Alison McGhee off the New Releases shelf in the library for the usual reason: I liked the cover. I’m a sucker for a good cover, and this one had snow. I didn’t even read the jacket fully which is almost always a recipe for disaster.

I remember skimming over something about a daughter who returned home and something about a family secret. Here’s a truth about books: Famly secrets usually have to do with adoption. This one didn’t, and I felt somewhat shocked.

Instead of the adoption side of my life, this book decided to slam into another big and more recent theme. The novel follows Clara Winter as she returns home to—wait for it—care for her mother who is deteriorating rapidly due to early onset Alzheimer’s. Once I realized the plot of the book, I sat it down and gave it the side-eye.

If you aren’t friends with me on Facebook, you might not know that this is my life. Kind of. My husband and I are actively involved in caring for his grandmother who is exiting Stage 5 and entering Stage 6. We’ve been kind of forced into this role, but we’re here and we’re doing the best we can.

So when I realized what was happening in the book, I literally sat it down and looked at it.

Fiction matters. It really, really matters. You can claim that it’s “not real” and therefore doesn’t matter as much as non-fiction, but you’re wrong. I learned a number of things from this novel. I also cried a lot.

As Clara tries to reconnect with her mother before she dies, she learns to just “follow her.”

Sometimes Mamaw doesn’t know she’s in a nursing home. She talks about finishing dinner and going “upstairs” to go to bed. Sometimes she forgets the boys’ names. One time she forgot me completely. (That one sucked.)

We follow her.

Sometimes he’s looking for her childhood neighbor. We never know where—in time, in space, in memory—she’s going to be.

And so we follow her.

Sometimes it feels frustrating. But Never Coming Back taught me the concept of just following her. It also taught me to stop prodding her with the word “remember.” She can’t. Mamaw has no short term memory left. Sometimes she remembers really obscure, way-back memories. Other times she can’t grab a name. Most days she can’t tell me what she just ate as the empty plate sits in front of her.

And so we’re learning to follow her. It helps keep the agitation at bay.

Like Clara’s mom, Mamaw is never coming back. We don’t have any mystery surrounding her mental decline, of course. Instead, we’re just stuck, watching it happen. The book was hard to read for this reason. I wanted Clara to achieve the closure she wanted and needed, but I knew we wouldn’t have a similar experience.

Someday Mamaw will be physically gone. We are doing our best to serve her now, while she is with us. We follow her.

If I had read this book six or ten or twenty years ago, I would not have understood the pain of losing someone to this disease. Reading it now, I felt overwhelmed at times by the similarities in thought and experience. I don’t know if I’d recommend reading this while actively deadling with a declining loved one, but I wouldn’t not recommend it either.

I am glad I grabbed this book off the shelf. I am thankful McGhee wrote this one in a beautiful, heart-breaking, so-very-real way. At the very least, I felt less alone. I’m thankful I learned how to follow her.

And we’ll follow you where you go right now, Mamaw.

Follow Her