I thought my mom had forgotten how to write. I still have my mom’s handwriting in my brain. It’s big and loopy cursive writing. I remember how much I used to like it as a kid. Much better than my dad’s handwriting, which no one could ever read, including him. If I try, I can imitate it, that’s how well I remember it. And on more than one occasion, when I’m filling out a medical form or a legal form for her, I will notice I unconsciously start writing like her.
It’s been years, literally, since I have seen her sit down to write anything. The woman who made our kitchen table her personal office and nucleus of all list making, hadn’t produced anything in my presence but shaky signatures for the last few years.
Today when I went to see her and I opened the dresser drawer where we keep nail polish, sunglasses and hair scrunchies, there were two cards:
I recognized immediately my mom’s handwriting, the same way she’d written our names on birthday cards, school permissions slips, envelopes mailed overseas. The momsitter worked with her to write us cards, which she left in the drawer she’d know we’d look in.
And my favorite part for me , the one-of-kind way she always signed, “Love, Mom,” in big, loopy cursive handwriting is still there. She hasn’t yet forgotten how to write, or how to surprise us.
I tell the truth. I learned the value of doing it from my parents. Somewhere in my late twenties my brother once told me his insight on the truth, “You are responsible for telling the truth. You are not responsible for a person’s reaction to the truth.” This sounds simple. I imagine he learned the value of telling the truth from our parents as well.
Kathy DeMarco tells the truth. In the progression of her mental illness her honesty levels have sky-rocketed. Ask her any question and she will answer it honestly 98% of the time*. Ask her the right “type” of question and she will answer it honestly 100% of the time.
We are quickly progressing to a point where she will only repeat back what you have asked, and most times while she will answer a question with the added benefit of echolalia (where she repeats her statement over and over again). However, there are still moments, albeit brief, when she will answer your question in a normal, simple, direct, yet perfect and profound way. An example from last weekend:
Me: Mom, do you like milkshakes?
Mom: No. I don’t like milkshakes.
Me: You don’t like milkshakes?
Mom: No. I love milkshakes.
(I paused for a moment and just stared into my mom’s face. Wow, what a perfect statement.)
The progression of this disease has taken the inflection out of my Mom’s voice. Sometimes, her monotone delivery hits your ears flat and sharp, like a razor, but the simple honesty hits your brain like a ton of bricks. There are times, like that one, where I am caught off guard by the sincerity in her answer. I’ve never weighed the emotional attachment to milkshakes in such a way.
“I don’t like milkshakes. I love milkshakes.” This has been stuck in my head for the last few days. Ask a simple question and you get a simple answer. Sometimes, and quite rarely, you get a perfect answer. An answer where there is nothing more you can add. My mom has produced a few of those.
Back in the Hiawatha days, when Mom was living in Elkins, West Virginia, we went for our routine walk through Big Lots. In those days our routine consisted of picking up Kathy, stopping first for a visit at the Hiawatha store, then Big Lots, then Wal-Mart, and then a stop at Wendy’s (the cherry on top!).
We started our snaking back and forth among the aisles in the front of the store, in the bath and beauty section. As we entered the aisle on one side an older lady (white short hair, sweater with a cat or fruit or kid with a kite on it, and mouth scowling with disdain that someone else dares to shop at Big Lots at the same time as her) entered the aisle on the opposite end. We squeezed pass each other’s shopping carts in the middle of the row, me smiling and nodding, her mouth pursed like a cat’s ass and a look as if I just walked on her white carpet with mud on my shoes.
This pattern continued up multiple aisles, from bath and body through home goods and picture frames, and now into kitchen supplies. The older lady stared at my Mom in each aisle. You could look at my Mom and tell something was not “normal”, and I was already used to the stares from the public, but this felt different. The older lady wasn’t simply starring, it was more like studying. I didn’t approve.
We were an aisle away from pets and food, in the back of the store, when we met for the last time. Kathy and I entered the row from one end, the older lady from the other. When we were almost in the middle, where we had previously squeezed past one another, the women looked at my Mom and then opened her mouth.
Woman: Wei-ell there. Lewk at ye-ew in yeur peink shirt. Aeren’t ye-ew pretty. (Her old women twang is bent on the words like music notes. The accent was so syrupy sweet and southern. It oozed with insincerity. I hate that about southern accents. The melodic tone put on condescending statements makes you feel like a wad of gum they just found on the bottom of their shoe.)
Mom: (Mom turned her whole body to face the woman) Hi.
Woman: Hi-ee. (She made “hi” a two syllable word.) Howh are yieeew todayee?
Mom: I have to piss and shit.
Time stood still in Big Lots for a moment. The old woman’s jaw had dropped open, and her face contorted. Her horrified expression suggested she was frozen on the spot, helpless, and my mother was trying to light her on fire.
Kathy just stood there. Waiting patiently if there was anything else the woman wanted to talk about. When Kathy lost interest in the shocked woman she turned away, and started walking down aisle.
The old woman turned to me, still wearing her shock and horror. I think she wanted to say something. Her mouth sort of flapped once like she wanted to speak, but then couldn’t find the words. I was positively beaming.
Me: We have to piss and shit. Have a nice day. (I didn’t wait for a response just followed Kathy down the row.)
Matt DeMarco once told me, “You are responsible for the truth. You are not responsible for someone’s reaction to the truth.” I imagine he learned this from my Mom. If you ask her the right “type” of question and she will answer it honestly 100% of the time. Sometimes, her monotone delivery hits your ears flat and sharp, like a razor, but the simple honesty hits your brain like a ton of bricks.
My Mom, Kathy, doesn’t like milkshakes. No. She loves them.
And that’s the truth.
*The 2% of the time:
(Kathy sits/lays down in the dentist chair. Dental Hygienist sits on a rolling stool in front of her. Me, I’m standing up against the counter, making sure things don’t go pear shaped.)
Dental Hygienist (DH): Kathy, I’m going to ask you some questions now. Okay?
Kathy (KD): Yes.
Me: Pardon miss, but you might want to avoid asking her “yes or no” questions if you want accurate information.
DH: I work with Alzheimer’s patients. I know what I’m doing.
Me: Okay then.
DH: Kathy, do your teeth hurt?
DH: Do some of your teeth hurt or…
KD: (interrupting) Yes.
DH: Or, do all of your teeth hurt?
DH: All you teeth hurt?
Me: Miss, I don’t think you are asking the right questions?
DH: She says all her teeth hurt. She most likely has trouble eating. I know what I’m doing.
Me: Right. But if you don’t mind, just humor me for a second. Mom?
KD: Yes, Joey.
Me: Do all your teeth hurt?
KD: Yes. (The dental hygienist opens her mouth and inhales. She is about to speak. I put my hand up to silence her, and then continue without looking in her direction.)
Me: Mom, were you born on Jupiter?
Me: Mom, were you really born on the planet Jupiter?
Me: Mom, where were you born?
KD: Charleston. West Virginia.
Me: Mom, which of your teeth hurt?
KD: My teeth don’t hurt, Joey.
Me: Miss, you can continue your questions now.
Tonight the U.S. National Men’s Soccer Team plays a World Cup Qualifying soccer match. They play Guatemala. Win or tie and they move on to the next round of World Cup qualifying.
I love soccer. I played when I was a kid. I was a West Side Wildcat.
When I was five years old my father was asked to coach soccer on the West Side of Charleston. He already coached t-ball, little league baseball and basketball; he seemed like a perfect fit.
In preparation for his inaugural season he visited the library and skimmed a book on soccer. From this book he remembered three fundamental skill drills. The 7 years of practices following the team only ran those three drills. I didn’t know there were more than three basic skill drills in soccer until I had a different coach in junior high.
My father coached my soccer team every fall and spring from age 5-6, and 8-12. Due to his work he was unable to coach one year. When I was 7 my mom Kathy became the coach of the West Side Wildcats. I don’t know if she volunteered, or was volunteered, but there was a DeMarco at the helm, and one who knew less than my father about the sport.
When asking him about it once my dad told me he wrote down a “cheat sheet” for her to follow during the practices. Below is a paraphrasing of his recollection:
1) Use the whistle often to get their attention
2) Do some stretching
3) Skill Drill – dribble up and shoot at the goal
4) Skill Drill – Kid One runs towards the goal, Kid Two passes ball to Kid One, Kid One shoots at the goal, then change sides
5) Skill Drill – make two lines and pass the ball back and forth
Head the ball – Remember throw-ins use two hands over the head
6) Make Eric Bergman your practice captain it is the only way to keep an eye on him and keep from yelling at him the whole time
7) Keep an eye on Ian Flaherty and Todd Stutler- they like to play in the dirt more than play soccer
8) Michael Longsinger pretends he’s a truck- Tell him to be a soccer truck
9) DON’T LET THEM USE THEIR HANDS
It was a simple formula. Surprisingly, we won a lot.
Every Saturday morning of my Mom’s tenure she would be on the sidelines, giving constant coaching advice, and praise, from the sidelines during games like:
“Tuck in your shirts! If you look good you play good!”
“Don’t use your hands!”
“Get the ball!” “Pass!” “Run to the ball!” “Good job guys!”
“ Todd! Ian! Get up and stop playing in the dirt, the ball will come your way any minute!”
“ Michael, you’re a soccer truck!”
“That’s great!” “Go Wildcats!” “Go!” “Shoot!”
“Eric!” (It didn’t really matter the specifics of what he was doing)
Each game we were also given Coach Kathy’s sportsmanship guidelines:
“If someone gets knocked down help them up.” “Line up and shake hands with the other team.” “Don’t foul anybody.” “Play fair.”
When my father came back to coaching the following year my mother still yelled her support from the sidelines. She cheered on every kid on the field, even the ones she knew from the other teams. She was a great sport. She never missed a game.
Tonight the U.S. National Men’s Soccer Team will play. It is a high-pressure game. It’s a “must win” if we want to qualify for World Cup 2014 in Brazil. I am positive they will execute a game built on a foundation of more than three skill drills. I’m not sure what the coach will tell them in the locker room before the game or at halftime, but I hope he reminds them to tuck in their shirts; we need them to play good.
Today was the first day with the new momsitting service. Happy to report it was a big success. The momsitter arrived at 10:30, got mom out of bed and didn’t let her get back in bed till 1:30. They walked laps inside and outside. There was a sing-a-long that was attended. They worked some puzzles. The momsitter learned the eating routine and lunch went great. Hopefully Wednesday and Friday go just as well or better.
Joey and Katie are fostering a rescued beagle named Beauregard. We always had a dog growing up. First a weimaraner named Heidi, then a chocolate lab named Maggie. I remember my mom’s millions of lectures about having a family dog means everyone in the family is responsible for taking the dog for a walk, cleaning up dog poop from the yard, feeding the dog, and so on and so on. I wondered how mom would respond to having Beau around. As you can see from the video, it was a great meeting. The point where we try to all cram into the car at the end of the video is maybe my favorite video moment to date.
You know those ideas, and subsequent decisions, that are so simple that when you have them you think, “Why in the hell did I not think of this a long time ago? It would have made my life so much easier!” We had one of those recently. Get my mom a “momsitter.”
When we moved my mom last August to this new facility, she was notorious for being up and about all the time. She would wander the halls at 3AM, reading bulletin boards and eating late night pizza with the nurses on nightshift. Whenever we’d go to visit she was never in her room. We’d find her sitting in the lounge or the cafeteria. Other times we’d have to wander around till we found her wandering around. She was active.
Now when we visit, she is usually in her bed. She’s laying in bed watching tv or just staring out the door at people walking by. Once we get there, she gets up, we brush hair and put it in a ponytail, put our shoes on, and head out for a walk or a car ride or something. In last 3 to 6 months mom has moved from someone proactive to someone reactive, probably in part due to the disease and in part the medication used to treat it. As a result, she’s getting fat, she’s getting less mentally elastic, and slipping faster into inactivity than she needs to be. This whole process should be more of a fight. Not something you lay in bed waiting for.
Enter the momsitter. The facility mom is in has a huge team of caregivers and volunteers that do a fantastic job taking care of her, worrying about her, and loving her. Still the fact remains that they can’t give her the amount of one-on-one attention that she needs to stay active and focused right now. There’s too many residents they have to attend to. And the reality is, if you put her in a chair with a magazine and a puzzle, the minute you walk away, that puzzle better be able to work itself because mom is taking a nap. Stay with her, she’ll do the puzzle till it’s done, or until she decides she’s done with it and gets up and walks off, either way, a win.
As with most really simple ideas, the idea is the first step. The next step is usually to get completely demoralized by how complicated it will be to make it happen. And the third step is to try to find some source of motivation to power through.
I called my employee assistance program through my work and they acted as a research and referral service, coming back with a list of potential companies who provide companion care. My brother did the initial screening calls based on a list of questions we developed. I did the final interview with the company we selected.
So starting Monday, my mom is getting a momsitter three days a week for three hours a day. On the list of things to do…take walks, paint her fingernails, help her fold clothes and organize, play games, sing songs, work puzzles, hang out outside on nice days. How great is that? And why didn’t I think of this sooner???