Oral hygiene has been an interesting endeavour as Mom's Alzheimer's progresses. Brushing her teeth is do-able, but finagling toothpaste confuses her. Our best solution this far is for me to put the paste on the brush for her every day, and hand her one of these:
The electric toothbrush has been a Godsend; it does a lot of the work, and she gets a kick out of using it. It's also easier for me to help her with it when she decides to skip the back.
Friday evening I got her all gussied up for dinner. After shower and hair, I told her "Let's brush your teeth real fast and then we can go." While I was squeezing the toothpaste out, I heard quite a clattering in my right ear, and turned to find Mom standing about 1 inch away, doing what can only be portrayed by this 3-second video:
I gave her a look of utter confusion and some amusement, and she explained:
"You said `teeth real fast!' "
And then she collapsed into giggles. Once again, I followed suit; she can be kind of clever sometimes.
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:
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.
Who She Was. Hm.I'm figuring out fast that this topic will not be covered in one post. I have to start somewhere, however, so I'll summarize and fill in details as we go; how's that?
My mother was a bit of an enigma. To say that she is quiet is an understatement. Soft-spoken, and shy to a fault: As she loved people, and loved observing and being around them, her quiet manner was often misconstrued as snobbery. I remember many social circles, in our coming of age, where one woman or another admitted that she made an off-putting first impression.
On the other hand, my mother was also creative, fun, and fearless. Any idea was a possibility. Make candles on the stove? We can do it! Grab her daughters and drive to Ohio for the weekend? Let's go! Hop a train! Save a stray dog! Hold a funeral for a turtle! Shove 7 teenagers into her Camaro to get them somewhere—1 more? Sure, we can make room! Walk 6 miles to a restaurant for breakfast? Why not, we have all day. Picnics, swimming, sledding, biking, road trips, garage saling...the woman never stopped.
She was a legendary licensed daycare provider, taking care of as many as the state would let her, often 10 or more in any given day. Yes, TEN, babies, toddlers, pre-schoolers, and after schoolers, in a small, 1100-sq. ft, 3 bedroom ranch home. She was shrewd at running her business, keeping meticulous track of every hour she had every child, every meal, every mile, and every toy she bought, ending up with a stack of receipts and a spiral notebook of records to hand over to the tax man every January.
And she didn't just take care of your kids: She loved them, all of them, hundreds of them. Fiercely. All inhibitions went out the window if one of "her" babies was sick or in danger. I remember one set of naive new parents ignoring Mom's bizarre warning that an odd smell wafted from their child's head. It does sound ridiculous, doesn't it? She finally told them, in no uncertain terms, "you need to get this baby to a doctor." Turns out the infant had been stuffing blanket lint into his nostrils while he slept, and his sinuses were packed with the molding, rotting stuff. Strange but true.
Children were eerily drawn to her. Children she didn't know would reach for her from their shopping-cart seats, twist around in their high chairs in restaurants seemingly just to watch her, and cross playgrounds to hold her hand. I once sat with her in a doctor's office waiting room when a feverish toddler walked over and laid his head in her lap. She would just laugh when my sister and I would kid her, "You're creepy."
Our family photo albums are filled with photos of who she was, beautiful and busy.
Sadly, when the Alzheimer's started kicking in, and mothers began picking up their babies wearing diapers backwards, and onesies snapped on the outside of their pants, they wisely opted to take their children elsewhere. It was heartbreaking for my mother, and despite her advanced confusion since her forced retirement, she still yearns to be around babies.
She gushes when she's around a happy baby or child, and if she hears a child cry, she'll stop in her tracks. I often end up backtracking to take her hand and teasing her, "you want to pick that baby up, don't you?" She laughs, and admits, yes, the poor little thing, she wants to hug it. I tease her, but secretly worry that she'll just trot on over and pick someone's child up someday. I keep a close eye on her.
The children's feelings still seem to be mutual, also. Frugal Mom and I arranged a play date for Mom and her 3 year-old son, in September, and they were both in high-heaven. Mom was thrilled to get to play with and talk to a little kid, and G was equally happy to have an adult's undivided attention, showing her his sunflower house, and how to play in the sand. She spent the next 2 weeks repeating his name over and over, so as not to forget it, and hoarding gifts from around the house to give to him.
It's true that in many ways, my mother isn't who she was, but in many ways, nothing has changed. She still loves fiercely, and aches for others that ache, and she still adores children and would give her life for any one of them.
In matters of her heart and soul, she is definitely the same woman, and has remained iron-strong and steadfast. That's a lot to be thankful for, right now.
My mother was diagnosed with Alzheimer's just six years ago. She was 61 years old, and had been showing the signs of it for a couple of years. Her initial symptoms happened to coincide with our Father's death, and in the beginning, my sister and I chalked up her forgetfulness and anxiety to grief. In fact, her initial diagnoses two years before was "Anxiety-Induced Memory Loss." She was treated with a mild anti-depressant.
I intend to pay homage to my mother here, to tell you who she was then, and who she is now and I intend to do it respectfully. There are some of you that might take offense to the title of this blog. Alzheimer's is no laughing matter. Alzheimer's is Terrible, and Alzheimer's is Ugly, and Alzheimer's is without a doubt, heartbreaking and terrifying.
But it can take years to overtake one's life, and our lives are all better lived when acknowledging the good times, the humor, the caring, the beauty and the love that exists in those years, right in the midst of the heartache.
We have choices in life. We can grieve over our misfortunes, or we can choose to celebrate the highlights, and rejoice in what we have, and what we have left.
My Mother was an amazing woman.
My Mother is an amazing woman.
She's an amazing woman that searches for the word she knows she's lost, and substitutes another to get by.
She is an amazing woman with her shoes on the wrong feet, and 2 pairs of underwear on.
