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.

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.

Communication, a Telephonic Invasion

Communication, a Telephonic Invasion: Or, Managing my Phone Usage

“You’re intruding on what’s mine and
You’re taking up my time
Don’t have the courage inside me
To tell you please let me be
-No Doubt, “Spiderwebs”

I’ve been working on unplugging for quite some time. Yes, I love my phone but I refuse to let it rule my world.

Over a year ago, I set about turning off all notifications on my phone. All of them. Well, save for one that reminds me I am worthy. This proves difficult because every time you download a new app, it wants to turn on new notifications. Additionally, I also removed the number counts on my email, voicemails, and text messages. Looking at my phone, there’s no way to know that anything new is happening. I actively have to open Messages, the phone, and my email to see if someone has tried to contact me.

Not only did I remove badges and banners from even my most frequently used apps, but I turned off text notifications and put my phone in DND 90% of the time. Yes, I do understand what a phone is for, but I needed to take control of my device and thus my own time.

I will admit, doing those things resulted in some people who were annoyed that I didn’t immediately respond to their text messages. The phone issue was less of an issue in that those who really needed to reach me would, wait for it, leave a message. I opened my phone “app” once an hour to make sure I hadn’t missed a call. I would pull my phone out of DND when I was expecting a call back from the doctor or another known call. Otherwise, Do Not Disturb saved my soul.

For years prior to that, I made my default ringtone a silent tone and only gave ringtones to people in my circle. This was the next step beyond that one as I still needed more control over how my phone interrupted my day. As an aside, certain ringtones and text alerts cause me to have extreme anxiety to this day based on who they were attached to and the feelings associated with that time in my life.

I still missed a few things but was mostly happy with how things were going. When I added in use of the Hiya app to alert me to scam and spam calls as well as spoofed numbers, things got exponentially better. Now I knew I didn’t need to call back that number on the list despite the fact that they called me eight times in a row. As a bonus, my phone never rang for these incessant telemarketing calls. Straight to voicemail it is!

I now don’t miss much. The big update of Apple iOS to 11 brought about a super great feature for your contacts. Prior to the update, you could put certain callers on your Favorites list. They would always ring through on DND when they called in a traditional voice call, but not for a Facetime call on the first iteration of this feature. Then they allowed you to add Facetime and even text to your favorites, but these were also sometimes hit and miss. I still relied on them to allow those I wanted to contact me, my husband’s fire department, and my sons’ schools to get ahold of me no matter what.

But now it’s even better.

The update gave us Emergency Bypass for any contact you so choose. This means your phone will alert you for phone, Facetime, and yes, even text should you so choose, each and every time. Even if you’re in DND. However, as a caveat, it will alert you even if your sound is off and/or turned all the way down. As such, you may want to pull those select contacts before you sit in an important meeting or go to catch a movie. Just remember to add them back when you finish up. Sure, it’s an extra step, but it works.

Here’s the thing: I love being able to connect with my people whenever I want. But that’s the kicker: Whenever I want. Both my husband and I are missing the days when you left the house and your phone stayed at home. I literally don’t need to answer every phone call and text in an immediate fashion. I am allowed to put my phone down and experience the world. In fact, I want to put my phone down and experience the world. I also want to model that for my children.

I recently went as far as removing the Facebook app from my phone. Listen, I enjoy Facebook. I like watching videos of my nephews. I like to check out local Events to find fun things to do with my family and friends. I enjoy a good meme. I even appreciate the sharing of information and ideas in a respectful manner. But last week? My anxiety was already sky high thanks to things which I cannot control. Facebook did nothing to improve the situation, and I have a pretty culled timeline thanks to unfollow and hide. The hate and vitriol were still so unnerving that I actually deactivated my account over the weekend just to catch a breather.

It was heavenly.

I reactivated on Monday and immediately removed the app from my phone. I also removed my quick link from the bookmark bar and logged out of the website on my computer browser. I now am not mindlessly clicking on Facebook on my phone or my computer. To access the social media site, I have to type it into the browser on either device and actively login. Yesterday I logged in twice, though I also shared a recipe from a website after we ate it but I didn’t actively access Facebook. (Really. It’s a good recipe which I switched to the Instant Pot. 40 minutes on high, if you’re wondering. You are welcome.)

It’s not that I don’t care about my family and friends. I do. Very much so. I also don’t purposefully avoid phone calls or text messages as a thumb to my nose, despite what my dad thinks about me never answering my phone. (To be fair, he almost only calls when I’m on the opposite side of the house from my phone and somehow not wearing my Apple Watch—which is another post in itself.) However, I believe my time is my own. I don’t want to be so overrun by everyone’s opinions and negativity. I don’t want to be held hostage by my phone, by someone else’s demands on my time.

I’ll answer my phone when I want. I’ll return calls when I have time to sit down and give the caller their due respect with my quiet attention. I’ll respond to texts when I can. And yes, I still like my Twitter and Instagram, but if they start to negatively affect my mental health, they’ll get the boot from my phone as well.

All of this is to say: If you call me and I don’t answer, it’s not you. It’s me.

Communication, a Telephonic Invasion: Or, Managing my Phone Usage

“Sorry I’m not home right now
I’m walking into spiderwebs
So leave a message
And I’ll call you back”
-No Doubt, again, obviously

There’s Something About the Olympics

There's Something About the Olympics

There’s something about the Olympics.

They’ve been on consistently, save for a random afternoon binge on The Office, since the Opening Ceremonies. I’ve cried more times than I can count. I was crying by 8:01 PM on that first night. It doesn’t matter which country wins the gold; I cry. The commercials make me cry, especially that peanut butter and jelly one. I’m a sucker for a story.

But there’s something else about the Olympics.

Maybe it’s the teenager who overslept because he stayed up too late watching a comedy, won gold, and then dropped the f-bomb on a national network. Maybe it’s all the teenagers. Maybe, even more, it’s the 30-something athletes accomplishing all these big things while I sit on my couch, jaw dropped, mouth agape.

In my late 20s, a woman I respect for many different reasons marveled at my success. “Look at all you’ve done! And you’re so young.”

I’m just over two months away from 37, my late 30s. Taking most things into consideration, I’m okay with that age. I have accomplished a lot. I’ve won awards. I’ve stood on stages. I’ve done things I couldn’t have imagined doing even in my late 20s, let alone my teens.

But, I’m also not where I thought I would be by now.

I haven’t written the book.
I’m running a lot slower than I was running just two years ago.
My daughter no longer speaks to me.

To boot, my high school decided to have a multi-class reunion this coming fall, thus moving up my 20th reunion by one year. I thought I had one full year to get into the physical shape I wanted to be in upon seeing these people for the first time since our 10th. Nope. Seven months. Sigh.

These athletes, all at the very top of their game, both inspire me and leave me feeling like I’m lacking on eleven different levels. Oh? You just accomplished the top of your game at the age of 17? Cool, cool. I’m more than twice your age and I’m not really sure what I want to be when I grow up. I’m not sure I want to tell the stories I need to tell to write the story that needs to be written. I’m not sure I can do this, not sure I can stand up to the pressure.

But then, those USA women fight and fight and fight, not just in that amazing game but for years against the other equally amazing team. They lost. And they lost. And they lost. And they lost. And then they fought as hard as they could. Two shootouts. And the gold. The winner. The best.

The truth is that I don’t need to the best, the winner. I just need to do the thing. To write the book. It doesn’t need to be a best seller; it just needs to be written. And I’m okay with that when it comes to my running: I know I’m never going to win a marathon, a half marathon, not even a 5K. I’m teetering on not even beating my previous course record for the Pittsburgh Half Marathon which was my only goal for this year’s race. But I’m still going to do it.

So why not the book?

I don’t know.

But there’s something about the Olympics that make me believe. I opened the file the other day. I deleted some words. I added some other words. I’ve been here before. I might be here again.

But I know this: These athletes are doing more than winning medals. They’re inspiring us all.