Mom called me one morning a few weeks ago, and it was obvious she was crying. I waited for her to find words she couldn't. "I am crying" simply would not come to her, so she said "there are tears. Yes. There are tears in this house."
We are very close to her sister, Karla, but unfortunately we're separated by 2000 miles; she lives in San Diego, and though we talk often, we don't see each other as much as we'd like. Mom misses her.
Aunt Karla, teaching Mom to play hopscotch last fall.
They speak on the phone almost every day, but she wants to see her, to hang out with her, to be with her. I found out later in the day that Mom had also called Aunt Karla with the same message about tears. We both tried to comfort her, reminding her that at least there are telephones, and that Aunt Karla loves her very much and that we may get to see her when the weather gets warmer.
She cheered up after a day or two of comforting, some getting her out of the house, and lots of counting our blessings. We do a lot of that: counting our blessings, as we deal with this ugly disease.
But sometimes, it just gets to us, and we have tears in our houses.
I fixed Mom's plate tonight: leftover shrimp & angel hair, from her favorite chinese place, First Wok. While she munched away, I set a bowl of fruit next to her plate, and then a little candy dessert: "Here you go, Mom, some chocolate covered pretzels for a snack, when you're done."
"Chocolate covered puppets?!!"
"Yes, Mom, I'm giving you a chocolate-covered puppet."
She knew immediately that was silly, and started laughing. So happy to see me laughing with her, she said:
Mom often requests cheeseburgers for lunch, so I recently took her to Burger King. I ordered a cheeseburger happy meal for her, and she pulled this toy out of the box:
"Look, Mom! You got Spongebob Squarepants!" I told her.
Her reply?
"Oh, that's nice. I'll have to put those on when I get home."
I hate to keep Mom cooped up in these subzero temperatures, but she does not fare well in cold weather. 40-degree weather brings forth exaggerated shivering and exclamations about how she's freeeeeeezing. She hunches her back and hunkers down like she's battling 100 mph winds, in a 30-foot scoot from the car to the front door of El Toro.
It's been 50-degrees colder than 40-degree weather, and I've been alleviating her cabin fever with an extra hour of my company—woot! I warn her ahead of time: "we're not going anywhere because it's very very cold." She responds "Well, it's nice and warm over here; the sun's out!" "Sun" automatically translates to "warm" to Mom, as does a cloud—a lone cloud in the midst of a blue sky prompts her to predict rain.
After a week, though, I gave in and decided to get Mom out of the house for lunch, meeting up with the familia at our favorite restaurant.
Taking Mom for lunch in inclement weather means arriving to her house at least 40 minutes early. Slippers have to be replaced with boots. She will sit with her feet solidly placed on the floor, and when you ask her to "lift your foot," lean back, or you're likely to get it right in the teeth.
Once her boots are on, she'll walk around complaining about her toe, her toe hurts, this boot is killing her toe. Ask her, then, "doesn't your toe hurt all the time?"* and she'll say "yes it does, and this boot feels pretty good, actually."
Time for the coat. The first arm slides in easily, but the second requires a bit of tackling. she throws her hand all around, pushing it up into the sky, and down. When you hit the brakes, and say "give me your arm, Mom," she put her hand right in your face. "Here!"
Next up: Mittens! Jazz-hands are offered, fingers extended so that no mitten will slide on. Asking her to close her fingers results in making a fist, and still no mitten can be placed. After the first mitten goes on, she pretends it's a puppet, and says "hello, how are you?" and laughs her head off, while you're tackling #2.
Topping her off: The hat! Tug it down over her head, in the interim shoving her hair into her face, which she hates, and pushing her glasses down on her nose, and she can't see.
I adjusted hairs and glasses on Sunday, and asked her, "There, can you see now?"
"You sound like a cat. Now. Nowwwww. Me-oooowwww."
Again she thinks she's hilarious, which she is. She's also, by now, ready to go.
And we trundle out for lunch, where she'll order a salad with grilled french... french...fre.... shrimp.
*We don't ignore the toe problem all of the time; The toe is under doctor's care. The toe is getting better.
Communicating with my Mother, these days, although sometimes frustrating, is more often than not fascinating, and sometimes downright hilarious.
When the wrong word comes out of her mouth, she usually knows immediately that she's mis-fired. I am patient with her, and she is comfortable talking to me, so without embarrassment, she'll try again. I give her time and try to help her along without obviously finishing her sentences for her, when I can. 90 percent of the time she can find an alternate word or description. If she wants to go to "the store with the bullet," you take her to Target.
It's heartbreaking, sometimes, to see other's response to Mom's substitutions. I don't know how many times I'll say it here, but Alzheimer's really does freak people out, and I'm in constant wonder at what others must have to deal with, with their own, or their loved ones' physical and mental disabilities. Mom will say something sometimes, substituting one word for another word lost. I wrote in the last post how she used the word "flowers" when "leaves" was hiding for the day. While some people roll their eyes, ridicule, and avoid conversation with a crazy old bat, I find her absolutely, honorably courageous and brilliant for the attempt—and for usually finding a pretty ok substitute. Don't sweat the small stuff people, does it matter if it's a leaf or a flower? The point was that it's beautiful.
There are often some comical side effects to her word choices. Last summer Mom read in the paper about a murder in Champaign, and an "attempted murder" between a jealous couple, in her neighborhood. Agitated, she was, over all of these murders, and I explained them away to her, trying to lighten up the subject. There was no mass murderer in her neighborhood, it was "a mere love triangle" in which a jilted lover tried to run over his ex. A cheerful murder.
Mom got right on the horn with her cousin Mary, and told her all about the crazy events in her neighborhood. The murder! The attempted murder! Terrible, just terrible!
Only Mom couldn't find the word for "neighborhood." So, she substituted.
It was, I am sure, only minutes after ending their phone call that Mary called me in a bit of a panic. Trying to remain calm, she said, "Uh, hey....your Mom just told me someone was murdered in her house...is that right?"
Word Substitution = FAIL
Well, thank you very much for calling, but that information is wrong (Dead wrong, hahaha)....I hoped. Mom's murder report had come in on the ONE day in an entire year that I had arranged for Mom's dinner ahead of time, so that I could tend to other obligations. I got off the phone with Mary and thought, "Great, now watch. I'll go to Mom's house after work tonight, and there will be a dead guy in the living room."
There wasn't, and there's no point in trekking back to Mom and telling her that she misinformed Mary. I did make it a point to clarify, once again, that a crazed murderer wasn't running the streets, hacking up all of the neighbors.
So there we are. I keep a notebook, jotting down the more humorous Mom-isms, and will start incorporating them into my posts.
Disappearing numbers were the first real sign to me and my sister that Mom's flakiness was a means of alarm. She would call us over, genuinely upset when writing checks to make out her bills. "I know how to write `7,' " she'd say, "but I can't for the life of me remember how to write "teen."
She made the best of it: January 17 would be "January 7teen," and a check for $40 written out "4t dollars and 00/cents."
As it got worse, we changed things up: Teri and I each carried a debit card for Mom's groceries and other shopping, while I took control of her finances and bill paying. Legally. If you're facing a similar situation with your own parents, get an attorney and do it right: Get Legal and Medical Power of Attorney to cover your bases. When it comes time to "force" [hospitals, IRS, cable TV] to give you information that your parents will not retain, you need that piece of paper.
So, great! We got the money figured out, right?
But money was never the issue. Numbers were.
I'll pick you up at 5:00.
Today is January 6.
Microwave for 3 minutes.
40 mph
Take 1 pill every 6 hours day for 10 days.
1234 Main Street
Please call 217-555-1212.
I will be there in 2 hours.
Brian will be home in 11 months.
Man, we need our numbers for a lot more than math, and even when you still have all of your other faculties about you, having them deleted from your repertoire can really jack with your life. What do you do?
You acclimate.
What's today's date? becomes "Tomorrow is Christmas, and we're going to have a big dinner with the entire family!"
I'll be there in 2 hours becomes "I'll call you when I'm on my way."
Microwave for 3 minutes becomes "Hit this button that says "DINNER PLATE" (Circle said button with a big old Sharpie marker. Yes. Get over yourself, and write right on the brand new microwave.)
Drive 40 mph becomes...Driving is long gone, she gave it up willingly after staring at the dashboard and realizing "I don't know where the turn signal is."
(Still, "Want to drive today, Mom?" is a joke that makes us laugh every time "Oh, SURE," she'll say sarcastically, "hand me the keys." We laugh and laugh...while she crawls into the passenger side, hopefully of our own car.)
For other issues, we outsmart Alzheimer's with Gadgets:
2 pills in the morning, and 3 in the evening? Here's a Godsend that only I have the key to, in Mom's house:
Beep-beep-beep, grind grind, rotate rotate, here are your pills, little chicken! No more "did I take this mornings pills? Maybe I should eat some more!" Seriously, I can't remember to take a vitamin a day; if I ever end up with a slew of Rx, I'll be buying one of these for myself.
"If you ever need anything, just call me, Mom," is easy with this gadget. "Just pick up the phone and punch me in the face!" I tell her. My photo is there, along with Clint, Tim & the kids, her sister Karla in California, and cousin Mary.
Don't get your panties in a wad if you're not on the immediate phone list—consider yourself lucky! Remember that numbers/time issue? Seeing 5:00 on the giant digital clock we bought her means nothing to Mom...in the morning.
Neither does the time change from Illinois to California.
So as not to turn this blog into its own disease that might suck out your soul if you keep reading, I'm going to throw in a few bright lights. As I mentioned in the first post, we really don't walk around writhing and gnashing our teeth. Mom is still a social person. She likes to get out of the house, go out to lunch, have a picnic, take a walk, go shopping.
I'll admit that shopping can be a bit of a pain these days, and requires stocking up on patience before you head out the door. She's slower than she once was, and has a tendency to, ohhh, wander a bit. And stop in her tracks, to think. If she's in front of you, you run into her, and if she's behind you, you lose her. When you try to get her back on a path, she's likely to turn around in circles a few times before moving on. I have likened a trip to Walmart with her to herding an unleashed cat through the place.
Speaking of Walmart, a few weeks ago, some unsuspecting soul in the parking lot accidentally left the sliding door of their van open. They were parked next to us, and when I told Mom to go ahead and hop in the car and warm up while I loaded groceries, of course she took a seat in the that van. Oh, the squawking that commenced..."Gah! Mom, that's the wrong car! Let's get out, get into this car!" Mom thought this was hysterical, which started me laughing also.
For a more peaceful outing, I try to take her out to places that we'll both enjoy. We went on an Autumn-Leaf Walkabout last October.
She loved it, driving around (well, I was doing the driving), and wandering local parks. She is mesmerized by colorful scenery. Here's a shot of her starting her own bouquet of fallen maple leaves. "OHhhhh," she said, over, and over again...
"Just look at all of the beautiful flowers."
For all of the heartache that is Alzheimer's, I laugh with my mother every time I see her.
When you're dealing with something as big as Alzheimer's on a daily basis, you don't always step back and look at the big picture. You simply may not have the time or energy—and if do manage to find time and energy...it is golden, baby, and you're better off spoiling yourself with it while you can.
I am already finding this blog to be comforting and therapeutic, as it's allowed me to connect on a deeper level with other people that remember and love my mother. My cousin Nancy posted this message in response to the first post:
Aunt E____ is a wonderful person. I remember her always being there. If someone was sick or in the hospital or just needing help, she was there and dug right in, no matter what needed to be done. I remember her walking from her home to the hospital EVERY morning my mother was in the hospital, bringing muffins, sitting with us, just being there... It seemed like when she walked in a room everyone sighed "AHHH, E____ is here." I will always respect her gentleness, her calm way, her smile and her love. She is a wonderful person.
This completely bowled me over. I had forgotten.
It's not that I'd forgotten that she used to walk all over creation; or that I'd forgotten that she spent time at the hospital when my Aunt died—or that she spent time with any of our family and friends during times of duress. These things I know, they are memories under the radar, when I don't have time to sit and wax nostalgic.
What I had forgotten—what had flown completely out the window for me—is that other people have their own memories of my mother; memories that aren't mine. Memories I'd never heard of! What!?!
Alzheimer's is isolating. The patient becomes limited by the disease itself, and quite frankly, loved ones freak out over the symptoms and just bow out. With my sister Teri's (my only sibling) illness and passing in September, her family tending to her, my son in the military and inaccessible, my own little world with my mother has dwindled down to...well, me.*
What Nancy's post made me realize is that I, too, have become isolated. My world of taking care of my mother alone has become so focused and miniscule—out of necessity, mind you—that I actually thought I was just about the last person that knew her then
I forgot.
I am reminded that many of you your memories of her that define her life, who she was, and all that she's done. I need your memories of her. I need help remembering who she was.
And she needs your memories of her. I spoke to her last week, and said "Oh, Mom, one of my cousins told me she has the nicest memory of you. She's your niece. Her name is Nancy, and she remembers how you helped her and her brothers and sisters when Aunt Joyce died. Aunt Joyce was your sister-in-law, and you walked to the hospital every day, and hugged them and held their hands, and they love you for that."
You would not believe how happy that makes her, to hear.
So, if you got 'em people, send them to me. I'll post them here, and I'll share them with her. I'll write them down so she can read them, and tell her over and over who she was.
She still needs to know that she's not nobody.
*I do not, in any way, discredit the assistance I get, from my brother-in-law, niece, nephew, my boyfriend Clint, friend Diane, or from friends that have made me promise to ask for help when I need it.
Who She Is Now and the path we've taken to get here is the premise of this blog, so this one should be easier, right? However, Who She Is Now hasn't happened overnight; it's been a transition that has spanned 8 years, and I sometimes wonder if there weren't signs of what was to come 20, or even 30 years ago.
I've maintained all along that we were somewhat blinded to the initial symptoms of Alzheimer's as Mom was always—and I say this lovingly—a bit daffy. The woman talked to 2-year-olds all day long for 40 years, for heaven sake, and her adult conversations reflected that fact. We were well into adulthood and a standard conversation with her consisted of topics such as "Look! An airplane!" "There's a train!" "I see a robin!" or "Look at the cows!"
When larger signs began to show, they were often so infrequent and random that the thought of Alzheimer's still never entered our minds. Every 6+ months or so, she'd be tooling along to our house, and wonder, for instance, "Wait—am I on Springfield Avenue or Green Street?"
The millisecond of disorientation would shut her down. She'd pull over and call us, declaring herself lost on the near-straight-shot between her home and ours, one that she'd driven thousands of times.
If I'm going to reveal personal things about my mother, here, and spill ugly truths about Alzheimer's, then I'm going to (wo)man up and spill my own ugly truths: We initially found this irritating as hell. "What do you mean you don't know where you are? You're at Osco! Seriously, Mom, you're just nervous. Take a deep breath, get back in your car, and get over here." I remember Brian, when he was 14 or 15 saying "Why does she do that?"
Once we'd get her back to home-base, she could hop in her car and buzz off to Kankakee to see her own mother, if she wanted to. It was like her mind was a blinking alarm clock after a power-surge: It just needed to be reset, and worked just fine for months after.
The thing is, we all kind of short-circuit every now and again, don't we? Run out for milk, and come home with $30 worth of groceries, and no milk? Say something stupid like "Look at that lady's hat in the car in front of us—oh, never mind, it's a dog." Have you ever zoned out, driven across town, and wondered if you'd run any red lights on the way, because you don't quite remember the trip?
No? Shut up, you have too, don't make me feel paranoid.
They were that miniscule, these signs that were the beginning of the beginning. Small, inconsequential things that everyone is likely to do on an off-day, and nothing to shake two sticks at were the first signs.
