Tuesday, September 29, 2009
I had two immediate responses to the story -- great idea and... my Mom is so lazy, she'd never get up off the couch to go for the walk in the first place. I routinely leave her home for an hour or two while I ride or run to the grocery store. She's literally in the exact same position as I left her when I get home. Even though she won't admit to her age, there are certain things about retirement she takes quite seriously. Lounging tops the list. (Just so I don't seem too reckless, I leave her with the phone and call periodically to check in on her.)
Nonetheless, I went on line the very next day to order some type of ID. Instinct yelped that it was a really good idea. The problem was, once it came down to actually placing the order, I waffled. We never got my Mom one of those emergency alert necklaces because she'd surely keep forgetting its purpose, play with it and accidentally alert emergency crews hourly until they'd discontinue the service. Keeping a necklace or bracelet in place didn't seem any more viable. So, I put the order on hold while I tried to concoct a solution.
Up until that point I had only lost her twice. If you could even use the term "lost". Once I was leading the front of a shopping cart at Kohl's while she pushed. I went to turn the corner and glanced back to see she was no longer at the helm. She had stopped to look at an outfit 100-feet back and I ambled along at her usual pace never noticing she wasn't with me. On the next occurrence I did the exact same thing, this time with her walker. We were at a county fair. She had stopped to oogle at a baby and I kept right on going with the cart. This time I had an audience, a long line of people waiting to buy corn dogs. A roar of laughter led me to turn around to once again notice she was missing. It turned out the crowd was laughing at me. Or rather at us, she played the whole deal up with theatrics, waving and yelling "Here I am! Over here!"
The latest incident wasn't so funny. I went for a very short errand and as I pulled up the boulevard heading toward home I saw a group of women gathered down the street on the sidewalk. I noticed one had on the exact sweatsuit my Mom had on earlier that day. I zeroed in a little closer and realized ... it was my Mom! Here's the crazy part, I didn't panic, not yet. She was laughing and interacting with the women and it took me back. She looked just like my very social Mom from 20 years ago. It was actually really touching. Then I noticed the looks on the other women's faces. Different story. Complete distress. I squealed the car up to the curb rolled down the window and playfully yelled "What are you doing all the way down here?!" My approach was to keep the mood light. Next I noticed the huge expanse of pavement that woman covered to reach that spot on the sidewalk (strange what the mind observes even during a would-be traumatic situation.) I was really impressed. She made it almost 2 city blocks and without her walker! Then I looked back at the stretch of cement and almost passed out. She also did it, thank God, without a fall. I can only credit Guardian Angels. There's no way she should have made it that far without falling and cracking her head open or breaking half the bones in her little frail body. Shaking like a leaf now, I jumped out of the car and raced to her aid. The delayed concern was too much (or far too little) for one of the woman. She began questioning who I was and told me I'd have to wait for the Sheriff's department. They'd probably want to question me, she said. In other words she was accusing me of being a bad mom and not ready to put my Mom back in my custody quite so easily.
Turns out the sheriff deputy's were great and my friends and family even better. My sister reminded me of the time she received a 6:40 am doorbell wake up call. A school bus driver asked if the 2-year-old standing on the porch was her daughter. My niece had unlocked the deadbolt and regular lock all on her own and went out for an early morning stroll.
I really appreciated the support, but the heebie jeebies over the escape grew throughout the night. The next morning I hit Babies R Us and bought childproof door locks and a baby gate. We're now on lock down. If I go out, my Mom's either left with a caregiver or back to riding shot gun. And even that level of supervision isn't always good enough these days.
The credit (I'm trying to keep it positive) goes to the adult day care program. Now that she attends regularly, she has a whole new level of energy. On the flip side, her brain hasn't quite figured out how to channel the increased level of stimulation. Particularly on the days she attends the center, she becomes an outright jumping bean and I have my hands full. She literally can't sit still.
She really seems to enjoy occasional trips to the barn, so I thought we could keep those on the agenda. Maybe not. With her new found energy, she began getting out of the car to come out to the ring to be part of the action. I tried explaining that she didn't like the smell of horses, that it was dangerous and reminded her that she had always enjoyed just watching, she really wasn't ready to actually ride. Then, in case she didn't understand my logic, I took matters into my own hands and followed the brilliant advice of a good friend. I began placing her in the back seat.
I told her it was like a limo -- lots of room, an armrest for her drink and treats, even a reclining seat back. The truth was, it had childproof locks. They worked great, once or twice. Until she decided to crawl out the window. She was quite a Tom Boy as a kid. Luckily, the alarm sounded and I ran over before she had much more than her head poking out the window. She said she just wanted to say "hi." Satisfied with a little attention, she went back to reading and I went back to my horse. Ten minutes later the alarm sounded again. I ran back over and couldn't believe my eyes. She evidently remembered the window trick didn't work, this time she was heading out the sunroof! She was standing, or should I say teetering, on the back seat, reaching her right foot toward the center console, where I surmised she planned to hoist her bony body up and out the sunroof. (Or, in an even scarier scenario, we aren't positive she wasn't trying to slide into the driver's seat.) Either way, she was on the move and I once again found myself with visions of her cracking her head open. Even when I reached her side, she was far from being in the clear from serious injury. Easing her back down into the seat safely was no easy task. It's a 3-foot drop from the top of the console to the floor of the back seat. She's far from stable.
It was time to pack it in. I was a little frustrated, but held no serious hard feelings. I wasn't trying to ride at any cost. Up until this point, she really had enjoyed coming to the barn as a spectator sport. Now that I think about it, my once super active Mom has been reduced to mere spectator status in general since dementia crawled into her life almost 10 years ago. How cool that she now wants to go back to participating. The problem is going to be finding the right time and place. I don't want to encourage any more great escapes. I'm already making sure she has plenty of activities of her own to keep her busy and when I need my own escape from the burdens of caregiving, I pledge to find a SAFE way to keep her occupied.
Wednesday, September 23, 2009
It started during a trip to my sister's house this summer. My Mom is a voracious reader, but sadly with dementia, long-term comprehension just isn't there. My sister gave her a few children's books and other than a little initial embarrassment, they've proven to be a big hit. I'd personally risk damaging her dignity just a bit to see the joy on her face as she laughs out loud and even repeats funny lines as she reads now. It really beats coming into a room to find her back to reading the copy right page on an adult novel for the 10th or 12th time. (Authors and illustrators would be pleased to know she may not get caught up on the copyright page anymore, but she still reads every single word from cover to cover, including the full title page as many times as it appears.)
I'm not only a writer, but I love to read too. Why then, did it take me until tonight to realize the gold mine of an opportunity we have here?! We can go back and read ALL of my favorite childhood classics! Here I've had her in the big print section of the library and book store... We're moving over to the children's section toot sweet. (meaning tomorrow) I can't wait! The epiphany came after visiting a literary agent's blog site tonight. She asked for requests from readers of favorite children's books to read on vacation.
The list was sooooo awesome, I'll share a few: Pippi Longstocking (okay, that came from me. I dressed up as Pippi for Halloween in 3rd grade and even though the costume was brilliant -- right down to a stuffed monkey on my shoulder, perched right below braids held high with wire, no one knew who I was ... the plight of a bookworm! I was Laura Ingalls in 2nd grade. That year everyone said "Oh, a prairie girl." They didn't have a clue on that one either.) Ramona the Pest, Anne of Green Gables, James and the Giant Peach, one that's new to me: The Return of the Twelves by Pauline Clark, and one that I think is dear to me: Magic Elizabeth by Norm Kassirer (That's if my own memory isn't failing. I ordered this tonight -- can't wait to find out if the magical escape is just as exciting 30+ years later!)
Oh, and I'm adding Ben and Me by Robert Lawson -- hearing all about Ben Franklin from the perspective of a mouse just blew me away in second grade. I'm sure my Mom, as she struggles to survive in a household with two dogs, a cat and two horses, will find some kind of humor in that one.
I'll end with my Mom's all time favorites. Absolute number one is Little Women, followed by The Bobbsey Twins, and when we came along, Are You There God It's Me Margaret by Judy Bloom. Can you picture my late in life, flat as a pancake, grey haired mother recreating "I must, I must, I must increase my bust," for anyone that would watch and listen?
Especially given her let's call it "small stature" in the chest area, she just thought that was the funniest line ever when the book came out. Even more than the national craze it generated. I was originally thinking at the age of 87 I'd leave the coming into womanhood book off the list, but she's still rather obsessed with being less than endowed, so what the heck, bring it on! Let's see if that line still strikes her funny. And if it does, she can recite it with full arm motions and all as much as she wants -- in my opinion, it's never too late to try!
Monday, September 21, 2009
In passing discussions, I've agreed with others that anything new in her life will be difficult for my Mom to remember. She seems to have much more trouble with short-term memory than long-term. Makes sense to me. Or at least it did, until... we bought a new pair of white slippers!
They hung on the clearance rack at Target. $1.99 for a terry cloth pair of slippers with poms as tassels. A total bargain, but super bad idea for a lady that has no peripheral vision and trouble walking. They didn't seem all that safe.
My Mom was beyond enamoured with both the slippers and the bargain. I bought them. I figured we'd get them home, she'd go to bed, I'd throw them out and we'd all walk safely into the next day. I was sooooo wrong. First, she had to sleep with the slippers. Under her pillow. The next morning she had them on before she even thought about stretching out of the bed. We had to admire them throughout the day while she tilted her foot to and fro. It was hilarious. (And I guess not that unexpected. Friends and family call me "Imelda" for my shoe collection, the truth is they should call me "Wyn." Pre-kids, my Mom was known as quite the clothes horse and she still is. More on that in a different entry....)
The slippers remained a hit for two full days when an all out tragedy struck (Luckily not a safety issue, she walks in them just fine.): one of the cheap $1.99 poms fell off, knocking that new shoe smile right off my Mom's face. She was devastated. Luckily I still had the sewing kit she gave me as a gift long ago. To my surprise she sewed that pom back on by herself. I was floured.
And it didn't end there. For the next two weeks wherever we went she recounted the story of her new slippers. In great detail she'd explain how she found them on sale, how they used to have two poms, then one fell off and she sewed it back on. (That pom stuck, but another fell off and we never found it.) So she'd end the story by explaining the loss of yet another pom and how she cut one off so now each slipper has one pom.
Those damn slippers have now become my greatest nemesis and my greatest joy. As you can see by the photo she still sleeps with them often, now evidently secure enough to leave them on top of the pillow. They're practically worn thin. Every time I see them on her size 9 feet I have to chuckle. I think she loves them more than me. I've bought replacement slippers and she'll wear them, but she'll always check to make sure the white ones are still in sight. "Those are mine," she says.
She doesn't have to worry about them going anywhere. I have a secret plan to someday let her wear them in her final resting spot. They not only brought her a ton of joy in her new life in Michigan, but they serve as a great reminder to me, as her caregiver, to always give her the benefit that she's mentally not as far gone as I sometimes might think.
Wednesday, September 9, 2009
She genuinely seemed to understand the funeral proceedings. She mourned and acted every bit a grieving wife. It's the first time ever I didn't want to curse this horrible disease of Alzheimer's. Her brain allowed her to absorb and react to my Dad's death. For a little while anyway. Then her fragile mind healed the pain almost instantaneously, tucking it away in a distant memory.
The situation surrounding his passing now changes dramatically depending on when the topic is discussed. First, she seems to think it happened a long time ago, not last month. She tragically recounts that he died "so young." If you didn't know, he was 92. And finally, she also tells how he "suffered for so long," which also really wasn't the case. He had lost a lot of weight in the last two years and went downhill with weakness in the weeks before his death, but not in the tragic way she'd have you believe.
Sometimes I'm not even positive whether she's referring to my Dad or hers... Although her Dad also led a fairly long life and from what I can remember, didn't suffer a long illness either. I'm really not sure where the drama comes from.
Once in a while I'll remind my Mom that her husband was 92 and lived a long full life, but for the most part I just let the facts free flow wherever her mind wants to take them. It doesn't seem so important that she remember each and every detail over the death of the love of her life, but rather that we keep memories of him alive. It's also encouraging that she accepts her life now and where it's going. So far she's coping really well. I couldn't ask for more.
Saturday, September 5, 2009
One of the most awkward conversations about caring for my Mom is when people tell me I'm a saint. It happens a lot. I wish it were true. I mean just about anyone would like a free ticket into heaven, right? All along I've said I'm not that amazing. Today I proved it. One bad day and seriously, I quit.
When you hear what pushed me over the edge, have a tissue ready -- not because it's sad, pathetic or heart wrenching -- no, it was so ridiculous it made my sister cry laughing.
We were standing in the bathroom and I gave my Mom a squirt of Dial soap to wash her hands, that ingrate looked at me with absolute disdain and said "Thanks big spender." I'll admit, I only gave her a dab, but that's all she can handle. If I gave her any more she'd never be able to rinse the suds off. That was it. The last straw. The audacity. After all I'd done for her. I gave her the entire bottle, told her to take as much as she wanted (it had 25% extra) and I stormed out. She could go inflict her cruel comments on someone else. The minute I uttered the story out loud, I broke into hysterical laughter. I enjoyed the comic relief, but it didn't change the situation, I was still fed up and my Mom could move out.
The big spender line was the final straw. The truth is frustration had been mounting for over a week. I just didn't recognize the severity until I snapped. My Mom suffers from recurring bladder infections. They are very common in the elderly and very frustrating. First, older people do not show signs of fever, blood in the urine or any other typical symptoms of infection. Instead, they show you their alter ego. A 180-degree change in personality. So my happy go lucky Mom becomes obstinate and ornery. The antibiotics can sometimes make her paranoid, even more disoriented than usual and this week gave her insomnia. That woman was up all night every night and getting into everything. I left her alone for an hour one night thinking if she was bored she just might fall asleep. Oh no, I came in to find her fully clothed, seven layers deep! Seven layers of shirts and six or seven layers of pants all piled on her skinny little body. A nice mix of pajamas and street clothes. The next night she locked herself in the bedroom. I found myself at 3:40 am, laying outside the door in misery, coaching her on how to find the light switch in the pitch dark room, then how to unlock the door. I watched the sun rise two mornings in a row, as she finally fell to sleep.
Desperate to reclaim a schedule, I didn't let her sleep long. I went back in at 10 am to rouse her and wow did that lead to all out fights. I wish the blog had sound effects. Imagine "Get out!" in an Exorcist type tone. And an angry "Leave me alone!"
When she finally gets out of bed, she turns her nose up at every meal, thinks every outfit is ugly and throws "I won't" tantrums that could rival a terrible two's toddler.
So, in my defense, it's been a long, painful week emotionally and physically. But today's the first day I'm really mad. And even though I've claimed all along that I'm no angel, I'm a little shocked at my over the top reaction. Here it is, the first really bad day and I'm not only throwing in the towel, but I'm stuffing it into a Molotov cocktail, ready to let the whole situation explode!
(September 2009 note: I've now survived six bouts with bladder infections. And I mean "survived." For us, they by far present the most challenging obstacles in our mother/daughter relationship. And we've done it without a trip to the homeless shelter. I may not be a saint, but that's truly miracle!)
Wednesday, September 2, 2009
I also wondered what happened to her sense of grace, and what the hell happened to her math skills? (She spent a career at Chrysler in accounting.) She was undeniably older than almost everybody at the center that day.
In Florida she and my Dad hung out with people easily 20 years younger, but she has to know she's aging... Doesn't she???
Shortly after she told me I was one of her best friends. Well, I hope so, but I felt the need to remind her that I was also her daughter. She vehemently claimed she never had children.
We now have had this discussion repeatedly. Each time I tell her, in bedtime story format, that she met a wonderful man when she was 40, married at 41, had me at 42 and my sister at 44. Each time she's filled with a sense of wonder and awe that she just may really be my Mom. When I remind her that's why I call her Mom, she usually buys the story. (For the record, there are times, usually during midday, when she remembers she has daughters all on her own.)
I recently pulled out old photos to reinforce her maternal history with me. She lit up at a photo from my first birthday and even said "there's my baby!" I was so excited. Progress. "See, you do remember. That was my first birthday," I said. She looked at me quizzically. "Now, come on -- how could I remember that?! I would have been what, two?!"
Oh, the comedian! And, oh, my frustration! I would LOVE to know how old she thinks she is. I ask all the time, but she's clever enough not to answer. She knows she doesn't know. But she's positive I'm a practical joker when I insinuate she's 87. I periodically ask questions to help narrow down her current mental age. If she doesn't remember having me, she's at best in her 30's. One time when we were coloring (a new favorite activity) she said "If anyone came in and saw us right now they'd think we were crazy. Us being done with high school and practically in college." She often introduces me as her sister, but at what age???
Back to the adult day care center. I immediately found the opportunity to vocalize my concerns and an apology, privately -- straight to the director. I realized I really needed their center. I went there because I couldn't provide all the stimulation she needed single-handedly at home. I wanted my Mom to participate in singing, exercise, and arts and crafts classes. Now I knew our need was far more urgent. She won't be able to stay with me forever and she is going to have to start getting acclimated to being around people her own age. Her real age. Donna, a saint, explained the behavior was normal (for lack of a better word) and even let me in on a huge secret -- half the people there think they're "volunteers", strictly on site to help others. Viola! I signed my Mom up immediately to be a volunteer in the program. (2009 note: it took several tries, over the course of a year, but she now attends regularly.)
With the day care center enrollment worked out, I honestly don't know why I'm so concerned with trying to unravel my mom's current mental age. On the positive side, if she's not 40 yet, than neither am I -- I can roll with that. Thank you Mom, not only for the gift of life -- but now helping me shave a few years off!
Tuesday, September 1, 2009
In the background article I said I like to "ride horses, socialize and travel" -- that was my polite way of saying I am busy, semi-selfish and the least likely person you'd ever choose to be a caregiver. Having said that, I love to cook and entertain, I'm tired of living alone and have a deep regret over not having children. This was the perfect opportunity to give parenting a try -- luckily my Mom's a full grown adult and I can do it my way. (Which means without sacrificing a whole lot, the perfect message for people wrestling with the decision to give parent care a try or not: Caregiving does not have to be an imposition or restrictive, at least not as far as I'm concerned.)
My sister and I learned to read with Dr. Suess books. My Mom collected the ENTIRE set. When I say "learned to read", I use the phrase loosely, especially in the pre-kindergarten years. I remember a cousin bringing his girlfriend over for a visit and I recited Green Eggs and Ham, completely from memory, with page turns and all. As I write this, I'm thinking I need to add "Oh the Places You'll Go" to the set for my Mom.
The most lasting image I'll have of this caregiving experience is glancing over and seeing my Mom riding shotgun in the car. She loves it and I love having her along. The enclosed cabin seems to help her brain focus. We have some of our best and most lucid conversations in the car. We laugh, sing, point out beautiful gardens, pretty houses and even cloud formations while we drive. It's some of our best quality time. I'm always encouraging my sister to take my Mom for a car ride -- I'm sure she thinks I'm a nut!
I'm usually running late, so she often has a breakfast bar or sandwich on her lap. Yes, I confess, she probably has one meal a day on the road. That's definitely an "if Dad could see this" moment, especially if we've grabbed chicken nuggets at a drive thru. (She and I both detested fast food in the past, but her taste buds have changed and my need for convenience has grown!) Even if it wasn't a nutritional requirement, I'd feed her a snack of some type on the road. If she's not busy in the passenger seat, I'm plagued with "this is a long ride" over and over, even if it's the three minute trip up to the corner grocery store.
Oh, and the places she goes!
Starting from day one I've hauled my Mom around with me just about everywhere I go, including wine tastings, horse shows, even a Botox appointment. (She expressed absolutely no interest in the bizarre looking procedure, nor an ounce of motherly concern that it may inflict pain. Her only question as the Dr. poked needles directly into my forehead was if that was me in the chair. "Is that Mary?" she kept asking, keeping a constant vigil, probably worried she might miss her ride home.)
We go to the library and book stores. Even though comprehension isn't there, she still reads voraciously and appreciates being surrounded by books.
We go to church every week, festivals when we can, landscaping nurseries to walk through the flowers and sometimes even the movies, although most of the time she finds them too loud.
Restaurant experiences are always fun. My Mom moved from a rural part of Florida, where the most exotic type of eatery might be a bar-b-que, back to the Detroit area where she's now experiencing a much broader menu. I like to shock and surprise her, so our first adventure in dining was to a Greek restaurant where we taught her to "oopa"! As the waitress brought the cheese to the table and it poofed into ceiling high flames, I thanked God my Mom has a strong heart and her thick head of hair did not get singed. She loved the experience so much that she now yells "oopa" whenever she sees the flame, even if the Saganaki is being served across the room. And sometimes when it's not Saganaki at all... We also frequent a Mexican restaurant and one Sunday night the waiter was delivering fajitas to a table -- the platter spewed smoke and my Mom yelled, you guessed it -- "oopa"! The crowd sitting around us lifted their margarita glasses, gave an "oopa" cheer themselves and had a huge laugh.
When I travel with my Mom, I have to be prepared for that type of interaction. Everywhere we go she draws attention. We're like a traveling ministry to people healing from past pains. Women and men, sometimes even children, share stories of their own parent or grandparent. They often grab my mom's hand or even a chair and join us. She's loves chatting with people, so I encourage it.
For a while I took her to a local pub for sing-a-longs on Wednesday's. On those occasions I wished so much that my Dad could not only see where we were, but join us. The singer always took time to personally walk over with his guitar and serenade my mom. Together they'd croon John Denver's "Take Me Home Country Road," putting a huge smile on my Mom's face. I always thought we were at singing therapy, but one night he explained that he had been watching us. He was battling the decision on whether to keep his mom at home, or find placement. That night, I knew my Mom and I had a calling to help others make that decision.
I want to make people aware of the immense rewards of keeping a parent at home, but I'm also quick to warn that my Mom is what in the horse world we would call an "easy keeper." She's super happy, content and fun. A real joy to have around. That's not the case with many Alzheimer's patients who cannot tolerate too much change or stimulation. Many, sadly, also grow very mean.
Taking the imposition out of the relationship does require some creative give and takes. And they change constantly. For instance, after watching other moms read while their daughters rode, I gave myself permission to let my Mom sit in the car by herself for an hour. I leave her with treats and something to read while I'm in the barn and I park where I can keep an eye on her and she can watch us ride.
I also had to learn when it was acceptable to leave my Mom home. If she had her way she'd be included in everything, even dates. I had to learn not only where to draw the line, but that it was okay to draw a line. I worked soooo hard at making it not seem like a sacrifice to include her, it seemed wrong to ask for a little time off.
But, there are times when I need a break. And I'm learning to take them.
What I'm trying to achieve now is a healthy balance. I really hope my Dad can see that, because I know he'd be proud.
Whether it's due to my chronic procrastination or a completely erratic schedule since I've had my Mom as a roommate (a topic for a future blog), at least I'm finally following through with publishing entries.
I've had my Mom now for a full year -- I've been cataloging our journey since day one. So, we'll start the first week or two with a burst of activity, then taper off to a manageable pace.