ALZ and the Work of Women

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.

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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.

 

On Forgetting and Being Forgotten

On Forgetting and Being Forgotten

Forgetting is a hard thing.

Or, really, forgetting is an easy thing. It happens without notice. One day, one minute you know a thing and the next, you do not. Most of the time, you don’t realize you have forgotten until someone asks you a question or you need something.

Where did I put those keys?

Sometimes forgetting is part of daily life. Those keys weren’t hung properly on the hook when you walked in the door because the dogs jumped, excited to see you return home after a busy day of driving children to and from school and activities. Those keys were placed under the mail which you also forgot to grab yesterday since it was rain-ice-snowing and the mailbox felt too far away. Those keys and the pile of mail were both pushed aside when you went to start dinner, perching precariously on the edge of the counter but also kind of “out of mind” as they weren’t interfering with anything else. Out of sight, out of mind.

Well, I don’t know what I ate for dinner.

Sometimes recalling the mundane feels hard. What did I eat for dinner? I’ve eaten meals for over 13,000 some odd days. Maybe one meal starts to blur into another. Maybe last night’s meal wasn’t exciting or out of the ordinary. Maybe the memory of the meal mashed up with the potatoes from last week.

Maybe when Mamaw looks at the plate in front of her with food still on her fork, she’s thinking about much tastier meals from past years. Maybe when I’m standing in the kitchen, trying to remember what we ate last night, my brain is too busy thinking up what I’m going to create for dinner tonight. Maybe remembering what you ate isn’t overly important.

Meanwhile, the brain is a tricky creature that can pull up odd details without issue. Mamaw sat and told my husband all about a watch she got way back in the day. She explained it to him in great detail. Why that particular thing is easy for her to talk about and recall, I don’t quite know other than remote memory often stays intact even when short-term memory leaves.

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I’m blessed-slash-cursed with a memory that won’t forget even the most boring of details. I can tell you what I wore on the first day of every day of school. Useless, right? I can also describe in excruciating detail every traumatic event of my life: my daughter’s birth, the day I left the hospital, the first time the dog bit me as a baby, the second time the dog bit me as a toddler. I also have vivid memories of dreams—I especially hate this one because they sometimes want to mix into real memories and it can feel difficult to decide if I saved a baby from a tornado that devastated The Farm or not. Spoiler: I didn’t nor was there a tornado that devastated The Farm, though we had a close call once as well as a Micro-Burst.

And let’s be honest: There are things I would love to forget. The trauma, the loss, the way you made me feel; the way I made you feel and how it bowled me over. That feeling in the pit of my stomach when we got caught. That feeling in the pit of my stomach when I sent you a letter. That feeling that washed over my soul when I wanted to give it all up. Mainly, I would like to forget feelings.

I don’t know who that is.

One process of forgetting—the process of being forgotten—feels the worst.

I was the first to be forgotten. After Mamaw’s devastating fall last summer, we stopped to visit her in the home. After my husband and I left, she asked Gramps “who that woman was.” I understood; I’m the newest adult here. 14 years may feel like a long time, but it’s still relatively new when you’ve been around for 80 years. I cried, but I didn’t take it personally. Or, I tried not to.

When she forgot our youngest son, though, my heart broke a thousand times over. Also true: He’s the youngest and thus the newest in her life. She knew our older son, but couldn’t figure out our youngest son’s name even after he removed his new glasses. When we discussed it later, he said he understood. They’ve both been amazing as we deal with this slow, excruciating loss; they’re helpful and present. They ask questions. “How was Mamaw today? Was it a good day or a bad day?” They offer hugs and kind words.

But being forgotten sucks. Being forgotten by a beloved grandmother, even if she is a great-grandmother, hurts on levels he doesn’t quite possess the words to describe right now. And so he joins me in the kitchen as I hand wash dishes, a towel in his hand to dry them off before we put each worn dish, bowl, and glass away. He helps and helps and helps. He gives and gives and gives, as if to say, “See what I’ve done? Don’t forget me, Mamaw.”

I stand beside him at the sink, hands in the lukewarm, greasy water, willing the same.

On Forgetting and Being Forgotten

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.

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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)