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.

 

One Reply to “ALZ and the Work of Women”

  1. Oomph. I feel this so much. No one ever diagnosed my great grandmother with ALZ, the farthest they got was dementia. It pains me that her sons didn’t want to shoulder her care and was left in a nursing home in her last/worse years instead of letting my mom and the rest of us care for her as we had been.

    It was eye-opening to me at 20… 24, 25, knowing that with the birth of her first 3 great-great-grandchildren she would have no memory of them. Even though she held them all and would ask me where I “got” them.
    My husband’s grandmother was recently diagnosed with ALZ as well and it’s hard for me not to be there with my mother-in-law because I’ve already done this with my great grandma so all I can do from here is listen when I call and ask how grandma is. I’m holding you guys in my prayers as I know all too well what you’re experiencing.

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