Sunday, December 19, 2010

Who's Your Patient Advocate? (written Oct. 2010)

With a mere two trips to the hospital under my belt, I now feel the need to become a patient advocate specialist. Wow, did we learn a lot. Some from experience, most from other patients and their families. If you ever go to the hospital, make sure you ask around to determine your rights.
The first night in emergency, the staff convinced me that I could not leave My Mom unattended because of her dementia. This would include sitting with her throughout the night. She was on the list for a room, but they had 50 people waiting for beds. I will admit, because of her condition, they were kind enough to keep us in a room in the ER ward. I told the nurse on duty that I didn't mind staying and keeping My Mom calm for the duration, but we arrived early morning, it would be great to get a bite of dinner before I pulled the all-nighter. She overwhelmingly agreed and actually encouraged me to run out for decent food. "We'll pull your Mom's bed right here in front of the nursing station where we can keep an eye on her while you're gone." They did and did it well, but she never explained the consequences! My Mom and I lost the room! Someone else was wheeled in the moment she was wheeled out. I now not only had to sit with My Mom for a very long night, but in a bright hallway with 50 other patients waiting for a room. Ugh. I squawked enough that we eventually received another room.
When we eventually moved up to the fifth floor, I met my first little helper. My Mom's roommate. It was super sad because she's at the hospital way too much for a young mother, but she knew the rules quite well. It turns out the hospital provides sitters -- if you know to ask! How bout that? I didn't have to sit there through the night. Of course I ordered sitters pronto. That came with it's own challenges. First, every shift has their own "policy" for sitters. Some say it's okay to give a 30-minute notice, some say in a militant way they must be on duty for the duration even if family is in the room and some say sitters must be ordered by the doctor. My concern wasn't how the sitter got there, but whether he or she was competent. They work in four hour shifts. After just one day on site, I realized I needed to be present at the beginning of each shift to see who arrived for the job and if I could trust the person. Please trust me, I wasn't being picky.
It clearly states on My Mom's chart that she has dementia. It's why she needs a sitter. I came in the very first full day on the real floor to find someone yelling at her. "What's the matter?! Don't you know how to use a fork?!"
"Sometimes she does and sometimes she doesn't," I said as I pulled the curtain. "It's one of the challenges of her disease." You would think this gal would be mortified that I caught her in a moment of frustration. Nope. She complained. "Well she won't eat. She won't even eat the pudding." I sent her packing, then sat and watched as My Mom ate the whole dinner. In the hospital's defense, we had a couple of amazing people too. The problem was, it was always a gamble. So, even though I discovered we could use a sitter, it didn't provide much rest.
I complained about the inconsistencies to friends.
Beaumont posts a mission statement right in the lobby: To provide the best care possible to patients ... and with dignity. The only way I found effective, efficient and compassionate care was to plant myself on site 24/7. I blamed the situation on 'the system' not being prepared for dementia patients. A friend quickly corrected me. "It's the same for all patients," she said. "When you're that sick, you're equally out of it." She was right. If you're ever really sick, make sure someone peeks in at least periodically to make sure you're getting adequate care.
Hospitals are one of the biggest conglomerations in the country these days. Filled with bureaucratic red tape. It's all about the bottom line for big business. These places are over worked and under staffed. Sometimes a true caregiver can't even help you if they want to.
And that's when my friend hit me with the biggest whammy:
This is the sad state of our care institutions before socialized medicine.

Wednesday, October 20, 2010

Back in the Saddle Again...

Well, we just went from our first ever ambulance ride and trip to the hospital to two in two weeks! I wish this job came with a manual. It was just as taxing this time to decide if we really had an emergency and whether it was okay to call 9-1-1. Just like last time, it ended up being imperative.
The day started out great. My Mom was recuperating beautifully from the infection that sent her to the hospital. After almost two weeks of coma like sleeping, My Mom returned to herself on Sunday afternoon, bright eyed, big appetite and singing her lungs out, including her signature "Back in the Saddle Again" which ends with a specially added "ruff, ruff, ruff."
Well, she was back in the saddle again alright and riding a little too hard. She crashed.
Up and at 'em early Monday, she decided to dress herself. Unfortunately she overloaded her little arms and fell backward. The thud was thunderous. Unwilling to drop her favorite blue outfit she hit the ground with no arms to break the fall.
I ran in, my heart in my throat and found her looking all happy still surveying her clothes. Didn't seem too bad. Our biggest issue would probably be getting her up off the floor. She had been laying around for over two weeks and was pretty weak.
"I can help you up," I explained, "but I'm going to have to grab you around your middle. It may be a little uncomfortable, but it will be over in a minute and I'll have you on the bed."
"Yea. I'm not buying that idea. How about I'll just stand up myself." Okay, humor was in tact. That reminded me, I probably should make sure her bones were in tact, as well. The only pain she expressed was in her thigh. There was no bruising, no swelling and thank God, no bone protruding. I had her bend and move the leg. It seemed okay. I hoisted her 90-pound body up to the bed. While trying to sit up straight, she began to feel discomfort a little further into the hip. For the next hour I did everything wrong medically -- yet everything right for My Mom.
I let her finish putting on the blue outfit -- I mean she worked so hard to go get it and she'd be mortified to go to emergency half dressed. Then I let her eat the toaster pastry I had made her. Last time we went to emergency we didn't eat for hours and she can't afford to loose an ounce. I even showered. It wasn't until I returned to the room to check on the status of breakfast in bed that I saw her wince again. She was in pain. Suddenly the decision to call for an ambulance didn't seem difficult. I would never get her down the stairs and out to the car. I loved her too much to play a guessing game on whether there was a break. We needed professional help and it was time to roll.
Beware if you're ever being held at gunpoint or think you have an intruder, it can take a couple of tries to reach 9-1-1. I let it ring almost 20 times, then hung up to find the Sheriff's non-emergency number for assistance. In the meantime, dispatch called me back and we were off and running. At least 8 men responded. I did the usual second guessing, asking if it was really okay to ask them to carry her out and assist us to the hospital. They insisted I was doing the right thing. Same as last time, docs at ER immediately confirmed my poor little Mom was in the right place. She fractured her hip. We'd need surgery. At 90 pounds, I was sure she'd never make it. You hear of elderly people dying after hip surgery fairly frequently. I took comfort in the fact that it was her fashionista sense that led to the fall. She was back in the saddle, full of life and got bucked off. There are worse ways to go.
As it turns out, it wasn't her time. That woman not only made it through surgery, she was zipping around the hallways of the hospital the very next day using a walker. She's rebounding from the surgery remarkably well. So much so that we're seeing this as a big break for My Mom. We've decided that if she has to live this last portion of her life without her full mental faculties, she should at least be in the best physical shape possible -- so she's off to a rehab facility. I'm sad to be temporarily without my roommate and partner in crime, but she loves it there and she's excited about getting back in shape. She's also been hilariously funny -- wait til you hear the stories I have to share!! I'll start to post them as soon as I have a "break", pardon the pun, from the action.

Tuesday, September 28, 2010

The Sky Really Fell

“Don’t cry wolf,” My Mom would caution almost daily when we were young. Sometimes she’d even tell elaborate stories of a little girl that made up tall tales. One day this little girl found herself in a lot of trouble and really needed help and no one would believe her. I don’t know about my sister, but I would sit terrorized listening to this story. We used to read about Chicken Little and his cries over “the sky is falling, the sky is falling,” too. He seemed a little more annoying, so I was never too concerned over his well being. And from what I remember, he ended up being right anyway.
I guess the message got through. I know for sure my sister never made false claims to garner attention and I hardly did either. My most famous cry wolf didn’t take place until third or fourth grade when I maybe overplayed a sprained ankle a little at summer camp. The minor twist really hurt when it happened, but by the time the pain receded I was already getting piggy back rides around the property. Come on, who would pass up that kind of fun?
What I don’t understand is why My Mom was so obsessed with that specific type of precautionary tale back then or why she isn’t heeding her own warning now. That woman is so dramatic over a stubbed toe or a brush against her skin, I actually find myself feeling irritated if she complains of pain rather than checking to see if it’s legitimate or not. Not a good MO for a caregiver. And it landed us in a very traumatic situation yesterday.
Actually, let me back up to mid July. It’s one of the blogs I didn’t post yet – My Mom and I were leaving the house and she kept acting exhausted. I knew she was faking it, so I insisted she get moving. We made it to the kitchen sink where she grabbed the side of the counter just as her knees buckled and her feet swung out from under her. I was right by her side, grabbed her and the shock of it all brought her back around again in a split second. She became perky and alert enough to continue to head out of the house. The situation left me shaking like a leaf and very aware of how unprepared I was for an emergency. It also reminded me how lucky I had been that in two and a half years of caregiving, I never had to make a trip to emergency and never had to dial 9-1-1. A few of my friends that have begun caregiving for parents have been strapped with medical emergencies on top of the every day duties. My situation seemed like a breeze in comparison. So as we hit the car and took off for our afternoon of fun, I actually began to doubt once again whether my dramatic Mom hadn’t faked at least a little of the incident.
Fast forward to yesterday. We had a replay of feigning exhaustion. She had already been in bed for two days and I was convinced oversleeping was the culprit, nothing truly health related. She did have one of her recurring Urinary Tract Infections. The doctor’s office had already called in the prescription, I figured she could go to adult daycare for a couple of hours of activity while we waited for the scrip to be ready.
Through closed eyes and grunts we trudged to the daycare. As expected, her eyes popped open and a smile hit her face as we walked through the door to hear “America the Beautiful” being crooned at the sing-a-long. The only problem was her tummy was grumbling to the music as well.
The rest of the group soon left for lunch. My Mom and I stayed behind to make a trip to the restroom. Alone, in a room completely constructed of tile, she pulled the “I’m going down” routine. I yelled, I grabbed her head and told her this wasn’t the place to try this antic and then I realized …. she wasn’t faking it. This was a real emergency. Her eyes rolled back, her body convulsed and I abandoned yelling at her and instead screamed for help at the top of my lungs. No one could hear me – and I wasn’t crying wolf. The whole group had gone downstairs to the lunch room. I was in a giant, empty facility, hoisting My Mom’s crumpled body like a toddler on my hip trying to figure out what to do next. First I begged to hang in there. Next I asked forgiveness for not believing she was really sick. Then, fearing we were both going to hit that hard tile any minute, I propped her on the walker and somehow made it back out to the main room. Her head continued to sway back dangerously. My calls for help remained unanswered. I wrestled between staying with her and running for assistance. Survival won out. She somehow stayed propped half on the walker and half on a table while I ran down the hallway to the front desk. “Call 9-1-1!” I yelled, still trying to convince myself it was really an emergency. I had never done anything that weighty. “She might be having a stroke,” I added, mostly to convince myself that, yes, this was real. This was that dreaded emergency that any caregiver knows will happen one day.
By the time I got back to the room, the worst of My Mom’s episode had subsided. With help, she sat upright. Eyes closed and even more exhausted than early that day, but alive and somewhat well. Well enough that I started thinking I would look like an idiot in front of the paramedics. Who would look like she was crying wolf now? Just as I debated calling them off, they wheeled in. The first thing I did was apologize. They reassured me I was right to call and even started calling out symptoms as if to make me believe I wasn’t crazy. She was still pale, had almost no blood pressure and was severely dehydrated.
“I’m starting to doubt she should go to the hospital,” I admitted.
“She is bouncing back,” one of the guys said, but you should have her checked out. But a full blown ambulance ride? I thought to myself. It just seemed too dramatic.
“What would you do if it was your mother?” I asked.
“Don’t ask me that,” the female answered. “I’d leave her here.” At least, comic relief.
“What if she was a good Mom, instead of a bad one?” I added. We all laughed.
They assured me we were doing the right thing. I admitted, even to my disbelieving self, that at the age of 88 it was pretty miraculous that this was the first trip to the hospital for an old age concern. It was our first use of an ambulance too. (My Dad even drove himself to the hospital when he had a heart attack.)
The ER crew confirmed the need for medical attention. My Mom’s raging infection had likely spread to her blood system. A very serious condition. Her heart rate to this moment remains dangerously low. We had to have two talks with hospital staff to agree on no “heroics” if her heart rate or blood pressure dropped any further. “She could slip away tonight,” the doctor told me. “You made a good decision. That’s a peaceful way to go.”
Not so peaceful to the caregiver. Not when you know you dragged your Mom out to daycare when it turns out she was deathly ill. This mistake could consume me with a lifetime of guilt. Or perhaps I've stumbled across the reason My Mom read those bedtime stories all those years, maybe it wasn’t to scare me out of crying wolf, maybe it was to prepare me to accept the reality of life. If you cry wolf enough times there are bound to be consequences and it’s not necessarily your caregiver’s fault.
The good news is, My Mom survived. She’s quite lucid today and I was able to truly ask forgiveness for not believing her. I even pledged to take action a little quicker next time she claimed to have an ache or pain. We’re being very loving right this second, but when we get home – she’s gonna hear the warning tale of the little girl that tells stories! In fact, I saw a children’s book section in the gift shop. I wonder if they sell Chicken Little?

Saturday, September 18, 2010

Eat, Pray ... Love???

My Mom and I had girl's day out today. Two reasons: one I've been traveling a lot lately and I thought it would be nice to reconnect outside of our daily duties, and two, I was fighting with my boyfriend. What a better escape than a chick flick and what a better partner in crime to hang out with than My Mom. She's a sympathetic listener and God bless her, she always sides with me.
I didn't really intend for her to be such an active participant in the outing, nor quite so fun, but we really had a spectacular afternoon.
My Mom was pretty perky from the minute I announced we were going to the show. She's been failing again mentally and I honestly don't think she knew where we were going. As always, she was game for anything outside the house. Her enthusiasm boiled over like the popcorn spilling out of the popper as we hit the concession stand.
"Look at that," she said in complete awe over all the treats in the lighted case. Music to my ears. A girl's gotta binge while she's working out complex relationship issues (also known as sulking). I was thrilled that My Mom was an eager participant in ordering junk food rather than have her critically comment on the potential pounds I might put on as a result. (Yes, she would go there.)
Never have I ordered so much -- and the bonus, it was all at her insistence. How could I refuse? We walked into the theater with a giant bag of popcorn, candy, two drinks and even an order of chicken tenders. On the way, My Mom spotted an advertisement for a place that served ice cream. I assured her we'd make a stop there when the movie was over. Quick confession: My Mom never was much of a movie person, so it's even tougher with Alzheimer's for her to engage with a film. Seeing she was such a trooper at hanging with me, I thought the least I could do was provide a spectacular picnic movie lunch, including somewhat healthy protein from the chicken tenders. She sits quite well through a flick if I bring enough treats. We were prepared to make it through a double feature.
We don't go often, but my only real concern in attending a movie is whether she'll talk disruptively once the show starts. I save key pieces of candy for those moments to distract her from any lengthy conversation. She also hums through everything, but the cinema sound typically drowns her out. We've been shushed at church and a small play, but other than that it's been okay. Finally, I always go in the late afternoon when only a handful of people attend and we sit at a respectful distance from the other moviegoers.
I really wished that My Mom could understand where we were or the content of the movie. If this had been released in her day she would have taken both of her daughters to see it in an instant. She loved exposing us to other cultures and, even though she was a devout Catholic, she embraced the idea of attaining higher awareness and universal love. I remember when she and I went to see Gandhi when it came out when I was in high school. She enjoyed the movie for her own sake, but desperately wanted me to love it too. I remember vividly the animated conversation we carried on about the movie as we left the theater and all the way home.
I felt that same way toward her as we sat in the theater today. I wanted her to embrace the story. I hoped at the very least she'd enjoy the scenery. It was the kind of the thing the old her would have really appreciated.
I never expected her to become absorbed in the movie. My Mom was mesmerized almost from the minute the movie started. First of all, one of the opening scenes featured a baby. She's always enthralled with babies. Then she thought she knew Julia Roberts. She actually laughed at the jokes and elbowed me at one point to ask if I got it. In Italy the female characters were lying on the floor trying to button up jeans. I thought I should explain to My Mom that the girls had been eating too much and that's why the jeans were tight. "I know, she told me," My Mom replied. Hilarious. Indeed, the main character had said they that needed to go shopping for bigger pants in the previous scene. My Mom thought she was part of the discussion.
A little later when the Julia Roberts character was crying, My Mom stretched her arm toward the big screen to hand her a tissue. Touching yes, but also a sign of just how distorted My Mom's reality has become. I'm the one that needed a tissue at that point.
While My Mom was reaching out to the character in the movie, I was relating. When the book came out multiple people bought it for me and dozens, if not more than a hundred, said it was a 'must read' for me. I didn't make it past the opening chapters back then. The author was so like me, it wasn't even entertaining. I figured if I wanted to relive that type of pain, I would just go back and read my own journals.
That was some time ago. I feel differently now. I was anxious to see the movie. I knew it would speak to my soul, so I wanted to be in the right mindset to see it and I wanted to be with the right girlfriend.
How awesome that person ended up being My Mom. Today proved to be the perfect day and My Mom the perfect partner to escape to all the wonderful landscapes shown in the movie. She genuinely enjoyed every scene. It was remarkable.
My Mom and I appropriately ate our way through the 'Eat' portion of the story in Italy along with the characters. We fully embraced the trip to Indonesia for the 'Pray' portion and then we found ourselves run right off the road to happiness just as we hit 'Love'.
A handsome man driving a jeep rolled into town in the film. Immediately I knew it was the love interest. I felt my heart come to life, exactly as a desperate tap hit my right arm.
"I have to go to the bathroom," My Mom said as her stomach confirmed the urgency with a loud gurgle. There was no time for disappointment. With swift speed we wheeled out of theater six and made our way to the closest restroom. I needed to contain the pending concession stand catastrophe as best as possible. The treats took their toll.
By the time we were done changing and cleaning up it didn't seem worth heading back in for the final minutes of the movie. What good's a happy ending without the romantic build up? I stopped at the customer service desk and they were kind enough to give me a rain check to go back later tonight and watch the ending. I have to. As much as I love My Mom and didn't mind for one second having to take her home -- I can't risk what happened today becoming the story of my life -- Eating, Praying then totally missing out on Love.
I'll wait until she falls asleep and sneak back to the theater. I don't want to miss out on a happy ending!

Thursday, September 9, 2010

The Dancing Queen and other tidbits from this week...

My heart is about to burst. I have My Mom watching Momma Mia while I get a little work done on the computer and I looked up to see her full blown dancing, well, from the waist up anyway. The arms were swaying skyward, punching and swinging to the beat and her face was just beaming as the TV screen transformed her into the Dancing Queen. She caught me watching.
"What are you smiling at?" she asked.
"I'm thinking this movie looks pretty fun," I said quickly sending my arms into action so she'd continue dancing without feeling like I was making fun of her. Instead, she took a poke at me.
"See, this is good for you," she said as she watched my chair dancing maneuvers with interest. "You usually stay back."
She's right. I grew up super introverted. She doesn't remember having children, but she remembers my core personality. The shyness has been pretty much gone since high school, but I still slip back on occasion. It made me realize caring for her has really helped me over the final hurdles of living in fear -- we pull some pretty crazy antics. Come to think of it, all the silly things I wish I would have done when I was young. My Mom not only gave me life, but at 88 with full blown Alzheimer's, she's continuing to teach me how to live it to the fullest.
We're on "Super Duper Lights are Gonna Find Me" now. I'm not even sure that I have the words right, but regardless, we're singing them at the top of our lungs. We've rewound the scene several times to try and get the lyrics right. Such fun!
Monday we performed "I could have danced all night" from My Fair Lady over and over again.
(Okay, if we had a Peeping Tom, he'd tell you we play that one often.)

I have several stories to post -- I'm sooooo behind!
In the meantime, two funny highlights from this week:
Tuesday I told My Mom that it was the first day back to school for the kids. I suggested we call her granddaughters to ask how the day went but she was deep in thought, almost as if she was troubled by the news of school starting.
"The weather's getting colder, summer's coming to an end, it's time to go back to school," I told her.
Her brain whirled, her eyes shifted around the room calculating. What exactly she was thinking about, I had no idea, until she spoke. "I think I'm sick," she said feebly.
"So you're not ready to go back to school?" I couldn't believe that's what she thought, but I went with it anyway.
She clutched her throat and managed to add a little hoarse quality to her words. "My throat, my chest," she complained.
I assured her she didn't have to go to school which of course led to a miraculous healing.

The next morning we had a distinct fall chill in the air. I turned the heater on to blast a little warm air in her room before waking her up, just as she did for us every fall when we were young. She had a particularly good morning, so after putting her outfit on, I left her to put on her shoes and socks.
It's a 50-50 gamble on whether she'll carry out that type of task. If she starts right away, she'll usually stay focused and get the job done. If something in the room catches her eye, she's off target and anything can happen when she tries to remember what she's supposed to do. I've come back in moments later to find her putting on several layers of clothes or collecting pencils from her night stand. That morning she was quite with it and upset that she had misplaced her socks. I only stepped out for 2 minutes, but when I came back she was agitated and rather animated about the loss.
"I can't find my socks!" she complained with extreme exasperation. "I just had them!"
Sure enough, her feet were bare. I checked the floor to see if the socks had fallen from her lap.
"Oh come on!" she said pounding her fists into the air. I glanced up in time to see her animated gestures.
"Are you ready for a good one?" I asked her. "I found them."
I pointed to her hands. It was a chilly morning all right -- she was wearing them as mittens!

Saturday, June 19, 2010

Help -- My Life is Going to the Dogs!

It's not so much that I mind being home on a Saturday night... My Mom, the dogs, the cat and I are enjoying a quiet evening and beautiful sunset. The trouble is we're dealing with fleas. A super minor case, but a major pain in the neck when your Mom has Alzheimer's.
It seemed bad enough when I tried to escape into the kitchen to give them each a bath. My Mom would not stay in her chair, she kept asking where I went and trying to get up to come find me. I have an open floor plan so I could see her dangerously teetering out of the recliner chair with the footrest up, she couldn't see me because her chair faces the opposite direction. If only I would have known she'd be so needy today, I would have turned it around before I started Riley's bath. Instead, I had one hand trying to hold a small slippery dog all covered with suds, while I craned my head over the counter trying to prove I wasn't more than ten feet away. The flea soap had to stay on for a full five minutes to be effective, by minute three I had no choice but to abandon the bather and scoot into the living room to put My Mom back in place. Terrified Riley would leap down to the tile floor leading to an even greater veterinary emergency, I gave a stern "stay", "stay" as I cautiously left him and made my way around to the living room. Riley escaped to the counter top, but My Mom took the command quite well. She heard the order and backed right down into the chair!
Maybe that's the moment the transformation took place, honestly I can't be sure, but from there the whole ordeal took an insane twist. Trying to remain in her line of vision, I moved the post bath activities to the living room floor. From there I applied Frontline, brushed both dogs and even trimmed their toes. Guess who got jealous? This by far became the most ridiculous behavior ever displayed by My Poor failing Mom.
It started as I applied the Frontline prevention. Here's how the activity went from there:
(Late add: one part might seem a little tasteless, but it happened so I'm writing about it.)
"What would happen if I got one?" she asked referring to the medicine.
"I don't know," I said stunned that she'd even ask for something being applied to a dog. "You'd probably break out in a rash."
"I'd like to try it anyway."
"You're not a dog."
"I know."
"And, you don't have fleas," determined to make sure she understood that's a good thing I added "you should be thankful for that!"
"I could probably get some," she said brushing her head, as in hopefully she'd get them.
Then I began brushing the Sheltie.
"That's so nice." She paused as I continued to work. "I'd like to get brushed."
"You don't have any fur," I said shocked yet again, looking up in time to see her brushing her own arms with her hands to see how it would feel.
"No, but I have these," she retaliated by hoisting her barely there breasts through her shirt.
"I don't think you should brush your boobs either," I answered, trying not to laugh and wondering what could possibly come next. I could physically see her processing the situation, so I thought I'd toss a little more ammo in the conversation to convince any good remaining brain cells that she shouldn't compete with the dogs for attention.
"Besides, it's a steel brush, it would probably hurt."
"If you want to be that way." Pure dejection, until... about a half hour later she saw a yellow bag of treats on the table. She lit up.
"Now who put those there?"
"I did. They're dog treats."
"Well I didn't get one..."
What's going to happen when they start a game of tug of war with the pull toy????

Thursday, June 17, 2010

A "Quick" Errand

First of all, it goes without say, nothing goes quickly with an 88-year-old Mom whose average pace is a shuffle. It's not just about mobility. Behind the handles of a walker or a shopping cart she can power walk when she wants to, the problem is she needs to absorb every nuance during an outing right down to reading every sign and examining every piece of litter on the ground. Some environments exasperate the situation. The worst culprit for me -- the grocery store.
I used to sympathize with the moms who complain about the frustration of stores displaying enticing candy within arms reach of toddlers at the checkout -- I now say you have it easy. Your battle starts at the end of the shopping experience. Mine starts before we ever enter the store.

The other night after a long day out, I wanted to run in the grocery store and pick up two items for dinner. I should have left My Mom in the car. I didn't. Instead I coached her. "We've had a long day, we're just running in for two quick things for dinner. We're not actually shopping..." Did I honestly think she'd remember any of that? The "in and out" errand for two items nearly took two hours. It was a Sunday night and the Kroger staff had just finished peppering the entire store with bright yellow cards identifying every single item in the sale ad. My Mom is a shopaholic, she especially loves sales. We encountered the first "deal" on the sidewalk on the way in.
"Look at these, they're beautiful," she said beelining her cart to the hanging plants out front. A big bold $19.99 sign hung above the spindly, pathetic looking impatiens. Some of the flowers looked great. These particular baskets were no deal. "Let's take a couple," she said. Not wanting to start a fight, I told her we'd pick them up on the way out. Then in the foyer she found a gas grill for a mere $187 and a GIANT bag of charcoal on sale for, are you ready? Only $9.99. I couldn't convince her that she wouldn't need charcoal with a gas grill, but they were on sale so she wanted both. She already racked up over $200 in pretend purchases and we weren't through the second set of sliding doors yet. Nothing seemed out of her reach financially, but luckily for me the items were out of her reach physically. The plants hung high over head and the grill and bar-b-que supplies were up on a pallet. Inside the door it was another story. Within 3 feet we already had a half dozen 'must haves' including by one get one free coffee cakes, 10 for $10 pineapples (even though there's a one per customer limit), brownies and bread. I somehow pushed through produce, let her take one of the 10 for $10 cheese puffs and tired of hearing "wait, wait" at every single sign, I lured her a little faster into the store with the promise of finding the candy aisle.
You have to understand she doesn't just grab everything in site, she actually carefully weighs whether it's a good purchase, which is partly how these expeditions take so long, she just doesn't consider whether she really needs the merchandise. If it's a good deal, it's going in the basket. I couldn't wait for her to start analyzing the candy. There were 3 different types of sales and I was dying to see what made the most sense to her failing, yet often still cunningly alert, analytical mind. Giant Hershey bars were 10 for $10, bags of Willy Wonka chocolate squares were 3 for $6, and packs of Mars candy bars were 2 for $5. Would she notice quantity? Size or servings? Maybe even take the brand name into consideration? I stood back to let her do her thing. Within seconds she made her decision. One of each. "Well, you can't go wrong with chocolate, right?" Who could argue with that?!
It turned out to be a really good deal for both of us. She came home with probably 10 pounds of chocolate and I told her she couldn't have one until we hit the checkout which made her really motor through the rest of the shopping. A delight for us both.

Monday, May 31, 2010

My Real Mom for a Moment

I adopted a new horse last week. He's just a baby and my horse friends have been awesome at celebrating this first for me, complete with an "it's a boy" baby shower! (I called it a "bridle" shower.) My Mom totally got the humor behind it all and is thrilled to have the It's a Boy helium balloon here at home now. She loves looking at the adorable light blue Teddy bears.

"Trend" as he's called, went to his first horse show this weekend and I took My Mom out to meet him. I can't tell you enough times how much she detested animals and barn smells while we were growing up, and now she's now practically Dr. Dolittle. She loves our two dogs and Bug Kitty and she's now the very proud grandma of a 3-year-old horse, acting like she's had horses her entire life.

More celebrations ensued this weekend, including a champagne toast to the new horse. I included two other friends who are also new moms to young horses and I was even more pleased to offer a far more special toast. Although it's always sad to see parents in decline, I'm so proud at the number of my horse friends that are rising to the occasion and caring for their parents. I raised my glass in a toast to them Saturday, but want to acknowledge them again here. Maren, Jacki and Jules all have parents in varying stages of dementia, but they are each being women and daughters anyone would be proud of by stepping in as caregivers to their parents and doing a great job.

We're forming a little mini community where we can share advice and vent frustrations with each other. As we end the weekend, my biggest advice is to not only enjoy the little moments you often hear about, but to not forget sometimes they need to be created.

Now that I'm two years into this experience, I'm relying more on caregivers, which means I don't often take My Mom to the places I once did. My reasons are loving and genuine -- I need a break and she's becoming increasingly anxious in unfamiliar surroundings. This weekend I wasn't riding, so it seemed reasonable to take her along with me to the show. I'm so glad I did.

On the first afternoon we placed chairs in the shade near the stables where we could watch the show from a distance. The atmosphere was incredibly peaceful. "Now this is what I like," she said. I felt the warm breeze, I looked at the rolling green countryside and then I looked at My Mom sitting next to me, both of us taking in the beauty all around us, and I thought "me too." I'm thrilled with the moments when she's genuinely happy in her new life. I was so pleased with her love for the outdoors, I took her back again the next day.

This time we faced a totally different set of circumstances and in the end, she's the one that had a chance to spread happiness. The champagne toast cocktail party with a bunch of loud, excited women telling stories on top of each other and howling laughing proved a bit overwhelming for My Mom. She was edgy and ready to head home. Instead of leaving immediately, I moved a few chairs out front to the peaceful little plot of earth we occupied the day before. I wanted to try and relive the incredible feeling of having My Mom back for a few moments just like I had experienced the previous evening. Soon others joined and we had a little circle out front -- the perfect place for my show-off Mom to entertain! At my encouragement, I admit, she launched into her Scottish songs, followed by standards from the Sound of Music and Annie. She had the whole gang singing along and two of our youngest girls squealing with laughter when she'd point to them and give them a "boop, boop, boop" when she didn't know the words.

At first it seemed selfish for wanting to stay, but if I would have jumped and packed her in the car at the first sign of anxiousness, one of the brightest parts of the evening would have never seen the light of day.

What Was I Thinking?!

We ended Memorial Day weekend with a good round of thunderstorms this afternoon and there could be another form of a rumble around here before long if I'm not a little more careful.
It all started when My Mom said she hated rainy days -- which floured me. I LOVE stormy weather and rainy days because of how she raised us.
When we were little she kept a stash of toys in the linen closet that we could only play with when we were sick or it was rainy. As I grew older I often wondered how the sick thing never backfired on her. Most kids want to stay home from school in the first place, if there are special toys involved, it should just up the incentive, right? I don't recall that being the case with my sister or myself. It must have been understood that we only played with those toys when it was an unavoidable sickness like the measles, chicken pox or the plague.
Rainy days, if you think about it, fall in that unavoidable category too. There's nothing you can do about being stuck in the house during a thunderstorm except maybe be scared, or in our case have fun. I think the have fun initiative grew out of someone in our house being a fraidy cat. Probably me, but I honestly don't remember. What I do remember is the feeling of anticipation building at the first sign of a dark cloud. Something special was about to happen. My Mom would gather us close and first we'd talk about how there was nothing to be afraid of as the thunder started to rumble, then we'd bake cookies, play with the sacred toys and often climb into my parent's big queen-sized bed for a group nap with My Mom telling us how awesome it was to listen to the rain as we fell asleep. I still love finding special things to do on a rainy day. Today proved no exception.
After My Mom announced that she hated rainy days, I started thinking of all the exciting activities she might enjoy while we were stuck in the house, like painting, baking, or even reading out loud. What I really wanted was a cozy afternoon nap, but she has been up half the night the last three nights, so as much as I could use a little rest, the last thing I would ever allow was My Mom to grab a little shut eye. I needed her as tired as possible so we can both sleep through the night tonight. My dire need for sleep led to a great inspiration.
I decided we'd do a little workout, and not the usual yoga stretches, I upped the ante and selected a full blown Jillian Michaels workout from the free on demand service from the cable company. (She's the tough chick from the show Biggest Loser.) I justified that I could use a little extra push as we head into bathing suit season and My Mom could use a little high energy exercise to hopefully grow so tired she just might sleep through the night. She found the new workout routine engaging alright. As always, I made her stay firmly planted on the recliner chair, but her feet were tapping, her legs were kicking and her arms were pumping in all directions as she followed the commands of this new tough TV instructor.
Evidently Jillian Michaels came from the world of kickboxing, one of my all-time favorite workouts. She incorporated a number of punching and kicking maneuvers in the sets. My Mom, much to my surprise and dismay (or more likely ultimately my demise), followed along like a pro. Those skinny frail arms were throwing all kinds of punches -- hooks, jabs, crossovers and even an elbow.
What was I thinking?!
The worst part of having My Mom act like a jack-in-the-box at night isn't necessarily sleep deprivation for me, it's trying to get her out of bed the next morning. In her defense, she's exhausted. In my mind, she needs to get up and back on schedule so we don't continue the cycle. As you know from past entries, the rise and shine routine can become rather ugly. Just in the past few days she tried to break my arm in defiance as I led her to the bathroom, she threatened to "call the cops" and yesterday she told our friend and temporary caregiver Tasha, "I'm gonna scream!" as she took a turn rattling the night owl out of bed. My Mom sincerely meant each and every one of those threats and now I've gone and taught her to punch. And not a sucker or weak punch, no, she just spent 45 minutes practicing hardcore hooks.
I can hear her in her bedroom right now humming. It's probably going to be another long night of asking her to go back to bed repeatedly, followed by a rather short morning when I try to wake her up and she knocks me out with a one-two punch. (Does anyone know if being unconscious counts as sleep???)

Monday, May 24, 2010

Please Sir... Donate to a Good Cause

Although it could never compete with singing, arts and crafts definitely ranks as one of the all time highlights of attending daycare for My Mom. I keep saying my condo would now be an art gallery for her creations if she had her way. Her group pretty much makes the same types of things you'd see at a kindergarten classroom: traditional pictures, snowflake cutouts, tissue paper hanging mobiles, story books and even objects made out of brown paper bags. Almost every creation involves gluing on glitter or little heart shaped or star type cutouts.

Most of the artwork would be the type of thing you'd hang somewhere in the home either with a little scotch tape or sometimes a convenient little string incorporated into the design. And most of the time, a day or two counts as a full showing before My Mom forgets about it and the piece can be retired out of sight.
Neither proved the case for this Coolwhip container. She's had the thing a full year and refuses to part with it. The worst thing is, I can't seem to find a purpose for it -- and believe me, I've tried!
It's not deep enough to create a center piece of some type. It doesn't drain, so it can't hold a plant and sadly, it's just too unattractive to fit in with any decor.
I tried using it to hold her pens and pencils, but the opening was too wide. On a great brainstorm, I bought ping pong balls and created a game where she had to toss the plastic balls into the little bucket. It sat on her lap, and she'd flip the balls into the opening. A great exercise for dexterity -- until the dog and cat decided to play and rebound her misses. We now have two sets of mangled ping pong balls, pierced with teeth marks. And the little bucket, as of last week, was back to serving no purpose except collecting dust.

I let it sit around. I thought maybe, if it sat on display long enough, she'd grow tired of it, just as she does with all her other creations and we could finally put it away.
Instead, daily she'd pick it up, inspect it, comment on its beauty and one afternoon, to my utter surprise -- she found it's purpose!

I had walked out of the room for who knows what, and walked back in to find her with a pathetic little look on her face. She held the bucket in both hands, stretching it gingerly toward me.
"Please sir... could you help me out?"
A beggar's bucket?!
"Could you make just a small donation? I'd be so appreciative."
My Mom relished the part and played it so well, I had to go get a dollar and drop it in the bucket. Her face changed instantaneously from starved peasant to elated lottery winner. She would have kicked her heels if she could.
"Wow! I'm outta here!" she exclaimed, pretending to bolt from her chair.
This is why I have My Mom. She makes me laugh til I cry at least once a day. Surely that's complete payment for taking care of her -- although come to think of it, she's now the one hustling for money.

Just like everything else, I thought she'd quickly forget about her latest antic, but the next day when the caregiver arrived she was at it again. This time with a bigger story.
"My family has no food. Please, could you please help put food on the table?" she uttered in a weak voice followed with a feeble grin. (We're still awaiting the dentures, so the missing teeth truly help her cause.)
I went and grabbed a couple pennies to drop in the bucket to appease her.
"Cheapskate!" she called out. We were howling. Trying to set the caregiver up for a good evening while I went out to dinner, I gave her a five dollar bill to toss in. The move catapulted her to instant hero status.

Interestingly enough, this is not My Mom's first foray into begging. She and her sister Sarah actually got in trouble for singing and dancing on the boat to America when they traveled to this country with my Grandma from Scotland. People evidently threw money at their feet while they performed. The oldest sister tattled and my Grandma made them return the money.
I asked My Mom if she remembered that story. She was only six or seven at the time. She said she did, but she made no correlation to the current begging gig. Evidently receiving payment for showmanship falls into a different category than straight up panhandling. Or keeping in mind this whole begging thing is an act as well, maybe she just doesn't want to break character long enough to talk about it, after all she's netting quite a haul.

Monday, May 17, 2010

What Will I Remember?

My Mom's had some pretty rough days lately, which reminds me that this disease of dementia will progress. Some day it will be time to transition to a home and one day she won't be here any more.
I'm positive she'll go to heaven, so when I contemplate her final days it's not in a morbid or sad way. In fact, the thing that plagues me is actually pretty funny. I wonder exactly how and when her brain will kick back into gear. When someone with a debilitating illness passes, the comment is always "well, she won't be in pain anymore," right? So I'm wondering, when exactly will my Mom be free of the faulty brain wiring?
I'm assuming when she gets to the pearly gates she'll be greeted by and actually recognize my Dad, her sisters and brother, her parents and all the great friends she has had in her life. I'm counting on the fact that she'll know she's in the presence of God and be rewarded by the peace and glory of the afterlife. But then I'm wondering, if after she absorbs the awe of it all, will she wonder where the hell she's been for the last 10 years?
Will God give her recharged brain a quick replay to show her the great care my Dad provided in Florida, then the big move to Michigan when she came to live with me? I'd love to see the look on her face when she discovers she became an animal lover and the life of a party with her singing and dancing. I wonder if she'll be as perplexed as we are over where she came up with the song "High Jokes the Kiltee" and how it has become her signature song?

My other big question is, how will I remember her? What will be my lasting image of My Mom?
A friend echoed the sentiment of so many people the other night when he said that I will never regret caring for my Mom. It's true. I already cherish every minute spent with my Mom in these new conditions -- on so many different levels. But if I'm completely honest, mostly our time together fills the void of never having my own children. She's my toddler and I thoroughly embrace and even nurture her childlike qualities. I don't see her often as my Mother any more.
So, I can't help but wonder how will I recall her after she passes...
Will I remember the woman that walked out the door each morning dressed in a power suit carrying a cup of coffee in one hand and a purse in the other, one of the few working Mom's of her day? Will I remember what a great athlete she was, so proud bringing home golfing trophies even late into life? Or even how excited she was when her girls were old enough to buy gifts for her on their own so she'd get a great new golf outfit for Mother's Day rather than fuzzy animal head covers from my Dad?
Right this minute I don't remember that woman very well. Even when I look at old pictures I have trouble remembering my Mom for who she once was.
For once, I'm living in the moment and my moment right now is looking at the water color picture she brought home from daycare today. It's sloppy, with way too much paint in one area and hardly any in another. We critiqued the artwork driving home tonight. She knew it wasn't good. I assured her that was the charm of watercolors. I even took her new found art ambitions seriously and told her if she wanted to paint more deliberately, she should switch to oils. She agreed and ultimately embraced her latest creation.

So, will these new moments be the memories I cherish the rest of my life? Will my refrigerator be filled with pictures that look like they were created by a 3-year-old? Or will I eventually box these new achievements away and return to remembering my Mom's amazing accomplishments from days gone past? Maybe time will be the great equalizer and allow me to recall all the facets of our amazing, evolving relationship with the same intensity.
I hope so, but I really don't know.
I do know one thing. Even though images of my former Mom aren't as strong as I'd like them to be, there's no question I've taken on the job of caregiver because of the woman she was and the woman she molded me to be -- I'll never forget that.

Tuesday, April 27, 2010


I just love the first signs of spring...
The trees and flowers are in bloom, the weather is getting warmer and My Mom is riding shotgun again.
She had been sleeping half the day away all winter. I figured we were experiencing a new part of aging. I warned others if you tried waking her before noon it was like rousing a bear. Well, the analogy wasn't too far off. She appears to have been hibernating during the cold months!
Twice this week she was up and fully dressed with the sun -- catching me quite off guard I'll admit. I took a quick trip to Atlanta Friday. A friend and I left for the airport at 6 am. I told our caregiver if she arrived any time before 9 that would be fine -- it should have been.
I had a text message at 7 with the following: "Good thing I got here early. She's up and dressed in at least 50 layers of clothes!"
Murphy's Law, right? She must have heard me leave the house or something. Mystified by the whole clothes layering phenomenon, I've spied on her to figure out how it works.
She shuffles over to her shelves. (I keep clothes out in plain site specifically so she can still dress herself.) She eyes a "favorite" sweater and puts it on. Once it's in place she seems to forget about it. She eyes another favorite and puts it on... The cycle continues until she either a.) somehow manages to layer them all, which seems to have happened Friday, or b.) I catch her in the act and remind her that we have to take the pajamas off first. It really is pretty funny, but not as entertaining as riding with her in the car.
I can't tell you how much I'm enjoying having her back on outings again. She rides kind of low in the seat observing everything and anything passing by. Sometimes she'll read every sign, sometimes she gives commentary on people, sometimes we talk about life.
I've mentioned it before, but it doesn't hurt to say it again. There's something about being in the quiet cabin of the car that helps her focus. We have our best conversations in the car. She's almost lucid in the passenger seat. In the past few weeks we've been to a horse show, out to eat with my sister and her family, even just grocery shopping and every time the real treat is talking in the car. It's like I have my real Mom back as we travel from point A to point B.
She's full of life and jokes. She has renewed energy. A little too much energy some days. The trip to Atlanta was to find a new horse. I'm not positive yet that it will all work out, but as an activity last night, I asked her to give the new horse a name. She studied the pictures for quite some time and finally said, "I tell you what," her eyes glistened as she concocted a plan, "let's take a little ride and go see him!" She was so excited at the prospect of going on an adventure. "That would be awesome," I said, "but he's not here yet. He's still down in Georgia."
My Mom contemplated the news for about a millisecond. "Okay, then let's just go for ice cream!"
Like the flowers throughout our subdivision, she's definitely come back to life after a long dormant winter. "Sounds great!" I answered, confidently relying on her fleeting memory. At a few strokes before midnight, it was no time to be running around town.
Instead, I enjoyed watching her enthusiasm just at the thought of once again being on the go. She's definitely blossoming again and I suspect, we're going to make it through at least one more season.

Monday, April 12, 2010

When You're Smiling...

My Mom smiles at everyone and everyone smiles back. She really brightens a lot of days.
So there's nothing I wish more than that she had better teeth.
Sadly, what should be her 'pearly whites' are more witch-like these days. I'm not being mean. She's visited the dentist quarterly for as long as I've been alive, it's absolutely not her fault.

She spent the first six years of her life in Scotland where they never used fluoride. The damage from those early years was insurmountable for any human, and any dentist. The first time I stepped up as advocate for my aging parents was with a secret call to the dentist. I told Dr. Magar I'd pay for tooth whitening and he could tell her it was covered by insurance. She is such a beautiful lady, I didn't want her to miss out on the latest technology that may help recapture a little sparkle. That saint of a dentist personally took my call and spent a good half hour explaining that although he'd be glad to take my money, no whitening on the planet would work. My pretty hip Mother, it turns out, had already requested whitening on her own and received the same answer. She suffered from a 20-some letter condition that I no longer recall, mostly a direct result of poor dental care as a child that caused premature discoloration and eventually decay.
There was no way around it. Her teeth and gums would be the first features to betray her age and beauty. Her failing brain would soon after prove too unpredictable to do anything about it.

When My Mom came to live with me, my first order of business was to get a second opinion. I was determined to help enhance her smile. Two dentists. Two opinions. Both the same. You can't cap bad teeth or you heighten chances of severe infection. Dentures, in general, don't work with dementia patients. The primary reason, they lose them. It's best to leave the teeth they have in place. They might not constitute a full set, but at least they're permanent.
Now that we mingle regularly with other Alzheimer's patients, I've accepted the dental status. I don't think much of it when I see a tooth missing here or there on our new friends and I've yet to see anyone react terribly adversely to My Mom's lackluster smile. But even though the twinkle in her eye compensates for a sparkle in her teeth, I kept holding out hope that somehow, someday, she could snag a better smile.

Well, the time has come. She's begun losing enough teeth that the only option is to pull them all -- creating a now or never time to try dentures. It's kind of a last ditch effort. Nothing to lose, except, of course, her new teeth if they're carelessly wrapped in a napkin, left on a dinner plate, or I just heard, perhaps flushed down a toilet...
Hoping she won't have the track record of my high school retainers, we thought we'd give it a shot. I expected my heart to be filled with joy at the thought of her getting a great big new smile. I thought I'd be ecstatic. I was wrong.
I'm a wreck. This is by far the toughest decision I've ever had to make as a caregiver, maybe even the toughest decision of my whole life.
We went to see the specialist today. He couldn't have been kinder, sweeter or better with My Mom. She was in a very upbeat mood, all excited about the prospect of getting a smile like mine. In the car, on the way to the appointment, I very seriously explained the situation, including that although she'd get a great new smile, they'd have to pull teeth to make it happen.
"I want a new smile," she said very confidently. Pause. "I deserve a new smile." We had lowered the vanity mirror on the passenger side for her to assess the situation. She looked side to side at her face as we discussed the topic. "Do you think he could shave a little off my nose too?"
(Note to self: It might be time to cut back on the Hollywood entertainment news shows...)
That very vanity was my selling point for convincing our primary dentist that My Mom just might keep the new teeth in her mouth. Wyn has always been concerned about looks, which makes her a better than average candidate for dentures. I felt so confident about the decision as we entered the office.
The specialist met all my expectations. He was kind, gentle and so good with My Mom. It's the most personality she's ever expressed with strangers. Then he said he'd be happy to perform the extractions himself. He went on to say he had done them a lot. In Egypt. Tons of them. My dark mind spun out of control. Where exactly had he accumulated this vast experience? In a torture chamber?
My Mom still has 19 teeth. Who am I to say 'let's yank them all out'? The whole process of replacing the teeth takes almost three months. This decision would leave her gumming-it for a minimum of 10-12 weeks.
The prospect of putting her through that kind of pain practically paralyzed me. It took all the lure of a new smile right out of the equation. Who would decide the price of beauty when it came to My Mother? Not me. I did the only thing I could think of, I deferred the decision to my sister.
She jumped in where I left off. With even more questions. How many teeth would he pull at a time? With My Mom's condition, could she alert us properly if she was in pain? What would she eat? Would she understand the gum look was temporary? That we weren't trying to torture her? Paranoia is a strong component of dementia. She might think we're selling her teeth on the black market or something.
While everyone else in the dental world seemed to only be concerned over the odds of her losing the dentures, cost didn't even factor into our concerns. We only cared about comfort.
Then we analyzed the other side. What if we left the teeth as is? The front one already cracked. Infection and choking on one were potentially serious consequences. But those side effects at least would be caused by Mother Nature. We wouldn't be to blame.
As we prepared to leave the dental office today, I turned to My Mom one more time, hoping the environment would solidify the seriousness of our decision. Honestly hoping she'd show me a remarkable moment of clarity and make the decision herself.
"You can have a new smile, but you heard the dentist. He'll have to pull all your teeth first, to make that happen. Do you still want a new smile with dentures?"
My Mom didn't hear me. She was too busy interacting with her new friends, Dr. Badr and Pam, the receptionist. She went from being the sophisticated woman gazing in the car mirror an hour earlier, to a child, amused over the toy cars, horses and stuffed animals displayed in the office. Pam gave My Mom a little stuffed bear and she lit up. The joy on her face made her current smile beam like a million bucks. "I'm naming him My Boy," she said with such joy. "Oh, I loved meeting you," she gushed. "I'll come back here a lot."
We all laughed at the irony.
"Yes you will," I answered. "If all this goes through, you'll definitely be visiting here a lot."
If only I could be convinced she'll come out of the process with the same enthusiasm.
Seeing her smile at these new people today. Knowing the joy she experiences over a good laugh. Seeing the sad state of her poor little mouth today. It seems worth a shot.

Tuesday, April 6, 2010

To Tell the Truth?

I've been using real life flashcards with My Mom again. In other words, instead of holding up cards with pictures of objects, I point to the real thing.
It can be an object, like a candle, or a living, breathing being like one of the dogs.
Tonight we covered "plate, cup, bowl, fork, knife and spoon." I wrapped the exercise with my usual final question. "And who am I?" It's always a gamble on whether she'll answer correctly. Sometimes I'm a "really good friend," sometimes "her sister," or sometimes she'll deflect with a crafty "well I hope you know who you are."
Tonight she was spot on. "I know. You're my daughter," she said quite proudly. Upon closer observation she added, "but I might not recognize you for much longer."
Wow, I thought, is she acknowledging her crippling mental disease?
"You're getting fat," she said bluntly, puffing out her cheeks and patting her belly. I can't be offended, she wasn't wrong. I had definitely put on a few pounds lately.
The problem is, she speaks the truth a lot lately and it's mortifying when she does it to other people.

Last year a good friend of the family came to visit. I've called him Uncle Bill my whole life. My aunt raised his wife. Sadly, his wife died fairly recently and he reached out to us as family at the holidays. He came for what I'm sure he hoped would be an uplifting Christmas experience.
Poor Uncle Bill. He walked into the living room with a big smile on his face and embraced My Mom. I could tell she recognized his voice, but had trouble placing him, so I introduced him to her.
"Oh my goodness, I would have never recognized you!" She sized him up, taking in every feature. "Look at all that gray hair."
"Yea, well, I guess we're all aging," he said, handling the comment good naturedly. I jumped in prompting other conversation. A few minutes later My Mom asked who he was again. Same routine:
"I don't even recognize you," she said.
"I know, the hair," Bill said, still trying to laugh it off.
"And you've gained a lot of weight," she added. I could have died.
It's not just weight and hair, she'll critique anything that catches her eye -- which is quite a bit, especially when you consider she only has partial vision.

When I first started hiring caregivers I really worried about what she might say to them, but so far she seems to win them over well enough in the good moments that they, like me, aren't too terribly offended when she throws a verbal zinger.
In fact, one caregiver, Emily, recently relied on My Mom's candor. I'm known for my being a good cook, however, I admitted I wasn't sure about a batch of matza ball soup right before serving. A guy I was dating at the time had put in the special request. I had him try it in front of My Mom and Emily. Truly a recipe for disaster. In this odd family affair, I dished up a bowl for the date, one for My Mom, then started to serve Emily. She hestitated. The date took a sip and said it was good, but that wasn't good enough for Emily.
"I'll wait until Wyn tastes it. She'll tell the truth."
Thank goodness, My Mom loved it, and of course, said so.

Luckily the truth can go both ways, critical and complimentary. She'll often tell me I look nice, or that my teeth look good. Virtually every night, regardless of what transpired that day, My Mom will tell me she "had the best day ever" as I tuck her in to bed. No matter how rough of a day it really was, I know in that moment that's what she believes. And as I close the bedroom door whispering one last good night to my now very content Mother, I leave whatever earlier stress we experienced behind and reflect on how grateful she sounded. In that moment it becomes the best day ever for me too.

Monday, April 5, 2010


Guess who's legitmately sick today???
And guess who's finally feeling better and not in the mood to be homebound???
I just made My Mom chicken noodle soup. Wondering if I can sneak out and ride my horse? Maybe if she takes a good nap...

Sunday, April 4, 2010

I'm sick. No I'm Sick....

I'm finally feeling better, much better after a knock down, drag out sinus infection. I was already feeling a little lousy when I wrote the last entry. The minute I hit "post" I realized my foggy brain forgot to add the couple of funny stories about where we used to go as kids when My Mom handed us off, and now all the crazy places she's been and people she's probably met now that I hand her off... I just couldn't pull enough energy together to write a post.

As it would go, My Mom was still completely in "go mode" when I needed life to come to a screeching halt this week. She gets 'jazzed up' as she would call it from being on the go. It's as if someone pumped caffeine intravenously into her frail little body. For two full days now I've desperately needed rest and she keeps acting like she's on speed. We've been hanging out in the living room where I can lay on the couch and keep an eye on her. Every two to three minutes she has both feet off the recliner footrest asking me "are we ready yet?" or saying "okay, let's go." At first I humored her, "Where do you want to go?" I'd ask. Completely buzzed up from all the action she experienced the previous few weeks, she was literally game for anything. The question gave her brain some much needed exercise as she struggled to think up an answer. "Well... you know, there." Not good enough. "No, like where?" I pushed her. Realizing I wasn't budging until she came up with a solid plan, she really put her thinking cap on. "How bout the movies?" she suggested. My Mom never wants to go to the movies, but evidently anything seemed a viable option that day compared to being home bound. Later she added we could go to the store, home, or a couple times even to see her mother (who passed away almost 30 years ago.)

By the end of the second day of feeling lousy I couldn't take her jack-in-the-box behavior anymore. I decided it was time to really push the sympathy route. "Mom, I'm really not feeling well," I moaned. She looked genuinely compassionate. "You should have told me," she said. I could have laughed. I've done nothing but tell her I didn't feel well for over 48 hours. This was, however, the first time I groaned as I said it. That must have been the necessary emphasis to catch her attention. She was always great at caring for us when she was able-minded, the nurturing skills kicked in to gear. "Honey, you should have a good Hot Tottie and be in bed." (For the Scottish, whiskey is the number one cure-all. We use it for a multitude of ailments, starting with teething as a baby.) I thanked her for caring and told her what I really needed was to rest. "You need to relax and stay on the chair for me to do that," I said. She still wanted up and about. "I'll go get you something to drink," she replied, both feet back to teetering dangerously over the edge of the footrest. I desperately wished she could care for me, but the reality is she's much to unstable to wander around on her own. She also wouldn't know what to do or where to find anything once she hit the kitchen. Just to see what she'd do if I accepted her offer, I played along. The reason she doesn't know her way around the kitchen is that she always has an excuse to get out of cooking or cleaning these days when I try and include her.
"Okay a little juice would be good," I said. Sure enough, that did it. The thought of work sent her lazy little fanny plunking right back into the chair. Then she set out to make sure nothing further could be asked of her. Leaning back she now started to moan, raising her head to her forehead. "I'm the one who needs juice... I'm all clogged up." I wanted to say "Are you kidding me?!" but at least she was safely sticking to the chair for the moment.
I let her play sick for a while to keep her planted in the chair, but as this ridiculous sinus infection raged on, I needed her to help herself a little bit more than usual. Bedtime that night proved difficult. "Okay, get yourself into your pajamas," I coached. Pause. "Please, Mom, I'm really not feeling well."
"You're not feeling well? Look at me." She made her voice weak and raspy to match mine, and she even feigned a little fake cough. "My throat, my head," she gave a side look over at me taking inventory to see if she missed any major symptoms, "my chest. I'm a mess."
"I bet you are Sarah Bernhardt." She used to call us Sarah Bernhardt when we were little when she thought we were acting. Evidently Sarah was a contemporary of Mary Pickford or something. All I knew is that it was an insult. Well, what goes around comes around. It was my turn to use the term. My Mom could win an Oscar for this performance. She was as irritated as I used to get for being accused of acting. In fact, she was down right indignant. She sputtered a cough and tried to eek out a few tears. "No one even cares. Here I am so sick and I'm trying to do all this myself."
'All this', for clarification, encompassed putting her right foot into the pant leg of her pajamas. She absolutely looked on the brink of a breakdown over the small task.
And so it went on, for three very long days. Any time I coughed, sneezed or tried to speak, she too cough, sneezed and wheezed -- matching my ailments point for point. I guess looking back, I'm glad she only caught a fake cold. I was concerned that whatever I had might be contagious. Trying to care for her and myself if she was really sick would have been a lot to manage.
(Side note: We're 'both' on the mend this weekend, so I've got her back on the move. Last night we braved a rain storm to go shopping. We bought her a cute new mint green sweater which she'll wear today when we're once again heading out -- this time for Easter brunch.)
Enjoy the spring weather!!

Saturday, March 27, 2010

If Everyone had a Nikki

For a long time I've said "If everyone had a Nikki, anyone could be a working mom."
Nikki is the very first person that came to help care for My Mom. She's remarkable. Two summers ago, I came home from a long day of work to find all the laundry clean and folded, the house vacuumed, My Mom was showered, her hair styled and, are you ready? -- dinner on the stove! A working woman's dream! And it saved me from a horrible nightmare. A big summer storm hit an hour later, knocking power out for 5 days. No one had electricity, not even businesses. So while the unprepared couldn't even order a pizza, we ate a lovely candle lit dinner. As the power outage stretched for days, I kept thanking God for Nikki -- we had a clean house and a pile of clean clothes to carry us through.
This week while at our house, Nikki remembered my sister's birthday and had My Mom call and leave a message. My sister called me crying. "Nikki had Mom call. She sang in tune and sounded so happy!" she gushed. "I'm keeping the message." What a gift. They all spoke later that night which only heightened the joy.

Honestly, I've had great luck with virtually every person that's walked through the front door. While so many people insist on carrying out the burden of caregiving alone, I don't have any trouble hiring help. Maybe that's due to to My Mom.
I remember distinctly when my sister and I were little My Mom explaining her theory on babysitters to friends and family: "You need a break," she'd say. "It's healthy for us to have a little couple time (referring to her and my dad) and it's good for the girls to have a little independence and spend time with other people." She'd always say she'd come back from a night out or weekend off refreshed and a better, more patient parent. Part sales pitch for taking off for a fun golf weekend, part true belief I'm guessing.

Now that I'm in her position, I'm heralding the same message. Dementia patients become very dependent on their caregiver, to the point of being dangerously obsessive. By bringing in a variety of people, I keep her less focused on needing just me and I'm preparing her for the ultimate transition to a facility when the time comes. Odds are she'll have to go to full time care some day. Imagine how jarring that move would be if she'd relied soley on me for the past two years?
Now who sounds like she's making a bit of a sales pitch? I use the help when I want to ride my horses regularly or travel. I just returned from almost three weeks straight on the road. The duties were divided between Nikki and my friend Tasha. I'm happy to say I was completely confident the entire time I was gone. Part of the trip, as you know was to New York. It was one of the best weekends of my life -- I have to credit these two fabulous women for instilling me with the peace of mind to fully enjoy myself without worrying whether everything was okay back at home.
A lot of people ask how I find good people. I wish I had a more scientific answer. The truth is I pray for the right solutions and the ability to recognize the right person for the job. I started out using agencies, but was sorely disappointed. I started with a big name firm. The local branch and the woman who ran it came highly recommended. It was summer, I had the front window open and I literally heard her greet a candidate on the sidewalk and tell her to act like she had worked for the agency for a while. I was appalled. Another agency left me hanging on a morning I had a huge presentation to give. When I called at 7am, (after waiting since 6) the manager said "just leave your mom, we'll have someone there by 10 or 10:30." Was she kidding? How can you trust care to someone willing to abandon you for more than 3 hours?!
With that record from supposedly proven sources, I decided I could do just as well on my own. I ran an ad in the paper, prayed and ran background checks (not too high tech, but better than meeting on a sidewalk...) Just the mention of a check weeded most bad applicants out. Upon hearing I'd run a profile, one woman was forced to admit she was calling me from a drug treatment center and she then confessed, her boyfriend, who drove a cab, might not be all that reliable at getting her to my place on time. She bowed out on her own.
Most of my luck these days is through word of mouth. We've had a friend's mom, a friend from the barn, and a couple of nursing students. Nikki took a full time job, but she's still in the mix too. She's been part of our family for the full two years. Even though she looks nothing like me (we'll have to post a photo), My Mom doesn't seem to notice when she and I change places. It's become seamless. And the two of them have a great time together. We have Nikki's mom, Doris, in the mix now too. Extended family!

I'm not going to lie, I'm a prima donna and I love having the help, but more importantly, I love each of the people who have entered our life through this journey. While it's awesome to come home and find the bed made, a little laundry neatly folded and, of course, My Mom looking bright and chipper -- the added joy these women bring to our home overpowers everything else.
My Mom has a ton of fun experiences along the way too. She becomes part of the other women's lives -- going shopping, to dance class, family parties and even for rides in a convertible. She loves the action.
The truth is, My Mom was right all those years ago -- the break does us both good. It does My Mom good to mingle with fresh faces and I come home refreshed. I don't have the burden of catching up on chores and I can give full attention to the one who deserves it most -- My Mom.

Thank you to all the wonderful people who make our life complete!! And completely wonderful!!

Monday, March 15, 2010

While I'm on the Subject of My Dad...

Last night I blubbered and babbled, today I've accepted that it feels good to finally miss My Dad.
He truly was one of my best friends. We went to sporting events, played golf and loved to find dive bars to drink beer. He confided in me, even way back in 8th grade when he thought My Mom was having an affair. She so wasn't, but our bond grew ever stronger over Arby's beef and cheese sandwiches that night. For the last 20 years we lived in different states, but still talked almost daily. We even watched a World War II documentary by phone together. He'd show me his ship and recall side stories as we watched. It was always safe to call past midnight, especially if it was to watch a replay of a great move during a good game or to chuckle over a guest on a late night talk show. I drew the line at boxing. He watched it nightly. I watch it never.
It might sound a little weird that we were that close, but honestly, he was that fun. For a respectful grown man that was active in the church and a number of civic organizations, when he let loose with his daughters, he became a silly, wise cracking, make-you-cry-from-laughing, practical joking big brother.
In fact, My Mom used to always say she had three kids. Myself, my sister and My Dad. I'll be honest with you -- she did. He instigated far more in terms of trouble making than we ever did.

So imagine the mystery of My Mother suddenly becoming the fun loving, singing, dancing, actress, jokester person that's come to live with me. There are days I feel like I have to check my sanity. Moments I'm convinced My Dad is somehow reincarnated in her. If I think about it too much, it's down right freaky.
People always ask if My Mom was always so good natured and outgoing and honestly, the answer is no. During the recession of the 70's she went back to work at Chrysler and became the bread winning, meal making, clean the house, overworked lady that would eventually watch tv on the couch with us when she could finally unwind at the end of her very long day. I don't want to make it sound like My Dad didn't help out -- he did more than his share too, he just liked to play in between. While he goofed around and wrestled on the floor with us when we were little, My Mother always played the part of steadfastly sophisticated. She more or less remained that way until just a few years ago.

This weekend I saw a news story that likely explains the behavior shift. After a brain aneurysm, an average man became a talented artist, literally overnight. Brain damage affected his frontal lobe, the area of the brain that causes inhibition -- or in his case, the lack there of.
The definition of inhibition in his case meant expressing himself freely without a care over what people thought of his work. The results aren't always as positive. For the general population, losing inhibition can manifest itself from something as simple as setting a table twice because you don't understand it's already set -- to displaying shocking x-rated inappropriate sexual behavior. When I heard that, I thought, hey, that's the same types of behaviors exhibited in many Alzheimer's patients. Tonight I did a little on line research and confirmed that indeed, many dementia patients suffer from damage to the frontal lobe area. My Mom surely must. She's almost as lucky as the artist. The damage in her brain apparently allows her to live freely and have fun. (Actually, I'm the lucky one -- super thankful she doesn't participate in some of the wildly inappropriate behavior I've heard about!) So far, it's all G-rated. I think she's always wanted to be more expressive, but with the stress of a late in life family, a staunch upbringing and living in the shadow of My Dad, she just never found a way to let her more outgoing personality break through. Until now.
These days you can't stop her. In front of anyone she'll sing, dance, act, tease and laugh. She loves to laugh.

You can't help but wonder if she's reverting back to behavior from her childhood or truly breaking out of her shell for the first time at 88. The reality is it doesn't matter because I'll never know. Luckily having fun is a big part of my genetic makeup, so I'm on board with the childlike behavior and, if it's okay to admit, My Mom's new found silly antics sure soften the blow of missing My Dad.

Sunday, March 14, 2010

The Two Year Mark...

Today marks the second anniversary of My Dad's death and the first time I'm really grieving his passing. This delayed mourning started just before the holidays and seems to have hit a crescendo this weekend. I can't believe he's gone. I can't believe it's been two years. I can't believe the sadness over losing one of my best friends is just now hitting me. But I do understand why. After waiting for me to arrive on a Friday night, My Dad died in his sleep, at home, a smile on his face. He knew he had passed off care of My Mom to me and he knew everything would be okay. It was time for him to rest. At 92 My Dad had been the sole caregiver to My Mom -- his dedication and love so amazing we had the priest read a wedding verse at his funeral. The shock and in many ways delight over taking on care of My Mom so consumed me, I didn't have time to process the loss of My Dad.
That doesn't mean I don't think of him. He's in my thoughts daily. He left me with a pretty big task -- to be more specific, he left me an invaluable gift -- and its not just spending quality time with My Mom. By taking on this caregiving experience my parents have enabled me to pursue a lifelong dream. The kind that makes you think about them and thank them daily.

For as long as I can remember My Dad taught his daughters how to bet -- and how to split the profits if we won. If one of us scored big bucks in a Super Bowl square during my aunt and uncle's annual party, we'd have a family meeting that week and talk about what to do with the winnings. We'd usually agree to put it toward a family vacation.
Later in life he self proclaimed himself "The Sleaze" and became weekend bookie for college football and basketball games. In the fall the phone call would always go the same, "Out of the goodness of my heart I'll give you 7 in the Notre Dame game." The point spread would change, but whatever number he tossed out would always be in his favor -- usually by at least two touchdowns. That was until we got wise and learned to find the spreads on our own ahead of time, then the pre-game negotiating would get heated. After a defeat he'd feign having health problems to avoid payoff. The big time bets by the way -- chili dogs. He missed Detroit coney islands down in Florida. My Mom, a money gal, would go crazy over how serious we were and how many calls would go back and forth right up until the end of every game. "You never even pay up," she'd say frustrated. "It's about the pride, not the payoff," I'd constantly remind her. At the end of any given season we all knew exactly who was up and who was down and by exactly how many hot dogs. Sometimes there'd be carry over into the next season.

My Dad also bet on his daughters. He believed in us, and at the end of his life, he attempted to take a gigantic gamble on me.
I'll never forget it. Seeing that he was literally wearing himself thin caring for My Mom, I visited often the last year of his life. During one of the trips he wanted to have a serious talk. I thought Mr. Independent might finally be ready for assisted living, but was shocked instead at an offer he made me.
"You've always wanted to write," he started, my eyes immediately welled with tears. I never thought he took my writing endeavors seriously. He loved watching me as a television news reporter, he even took pictures of the tv when I was on CNN, but I never thought he saw me making it as a novelist. At least you wouldn't have guessed it from his critiques of my early work, or his pleas for me to go back into television, in particular begging me to do weekend sports. But he had a plan -- as unrealistic as it seemed. Bottom line, he thought he could pay off my condo and have me move down to Florida to help take care of he and My Mom. In exchange, he'd convert the guest room to an office to write the novel I always talked about. "I already called the cable company. They can install that computer hook up you need," he concluded, internet being the grand finale to his very generous offer, minus a couple of key points. First, he was still in pretty good health and I wasn't going to uplift myself to live indefinitely in the middle of no-where Florida (have you heard of Homosassa??) and he, being a World War II vet and super middle income, had no clue what it would take to pay off my condo. He'd for sure have to add a zero to his best guess. So, there was no way I could afford to leave everything and head down there even if I wanted to.
We ignored the big road blocks and continued to negotiate terms during each visit. "What if I wintered in Florida and you summered in Michigan?" I countered. "That would kill me," he'd say, trying to hold as much ground as he could, all in Florida.
He sounded so serious the week before he died, I half heartedly agreed to his terms, then tried to lighten the dire mood by asking what my pen name should be.
"James?" he asked immediately, his own name. "I'm not thinking that's for girls." "You're modern enough, but okay, how about Jamie then?" "No, it's not me."
"J.J.," he said, this time not a question. Those were his initials. He was called J.J. periodically throughout life, he used the initials and our last name on all documents. "I love it!" I exclaimed. I immediately had an image of this really collected gal named J.J. writing best selling novels. The name alone might give me the necessary persona to tackle this very difficult craft. And then the whole name came to me in a flash -- J.J. O'Neill. O'Neill is My Mom's middle name. I loved it. My Dad loved it and even My Mom seemed to love it.

That was our last big heart to heart talk. I drove back down to Tampa that Tuesday night for a training class and when I returned Friday he was too weak from heart trouble to talk about much of anything. He promised to go to the hospital the next morning if I let him spend that night in his own bed. Evidently the plan to help me achieve my writing dreams wasn't the only one on his mind.
He snuck out that night, but I still followed his wishes, with the minor exception of staying in Florida. For the past two years My Mom has lived with me in Michigan. Her account pays the bulk of our bills while I stay home and write. I work part-time, mostly for horse and spending money. And although I've had a lot of detours and difficulties trying to find a schedule that works, I've managed to somehow finish that novel. It's just a silly horse murder mystery -- a two-day beach read, but getting the 80-thousand words on paper in a somewhat meaningful order was still incredibly difficult. Procrastination, of course, being the biggest enemy. Now, not only is the novel finished, I'm attending a conference to pitch it to publishers in New York City this week.
When I booked the conference I had no idea it coincided with the anniversary of My Dad's death. I wish he was here to see the giant manuscript or to even help me word smith a few last details on the pitch. He was great at that.
My Dad came from the south side of Chicago. He supposedly emptied beer kegs for Al Capone to earn a nickel. He played sandlot ball for the mob. His whole life he tried to overcome a bad start. On my 40th birthday he gave me a small ruby necklace and said he wished he had been a Rockefeller to give me a piece of jewelry worth handing down to future generations. Instead he left behind a legacy far more valuable -- first as a kind and loving role model and next for believing in me. The intent, his attempt at helping to create a way for me to achieve a seemingly impossible dream will never be forgotten.
I still can't believe I finished this project. And I still can't believe he's gone because whether it sells or not, there's no one I want to share this moment of satisfaction with more than My Dad.

Friday, March 5, 2010

What a Kick

We've always said having kids late in life kept both My Mom and Dad healthy and in-shape. My Dad played golf right up until he died at 92. When we were little they were already in their 50's. My Mom swam with us, played tennis, golf and even took up figure skating. I remember the day she didn't pick us up from school and we walked home to find her laying on the couch with her arm in a sling. She sprained her wrist attempting a spiral -- gliding along with her back leg stretched way up in the air -- at 52ish.
Well, she's going to land up in a similar state or worse if she keeps up her latest antics. First, in an attempt to prove she didn't need a visiting physical therapist last year, she threw her leg up in a full blown Rockette kick complete with touching her knee to her nose. Before you panic, she was sitting safely on the couch for the manuever, but it was still very impressive. In fact, I often have her show off the move when company comes over. (I pray both God and My Dad forgive me for the minor dog and pony show. She gets a kick -- pardon the pun -- over shocking people with her agility.)
Now at 88 she thinks she's become a yoga aficionado. We do "tv yoga" -- you know the free workouts available through the cable company, but honestly, they're a workout. I've convinced her that due to a bad knee, she has to do seated yoga, but assure her that she'll still reap full benefits from the workouts. Most days she takes the practice very seriously, breathing in and out like a master, looking very solemn as she brings "hands to heart center" for rest. She's so hip when she utters "namaste" at the end. Although, as proud as I am, I must confess it rarely comes out "nam-a-stay", it's usually ama-something. One time she respectfully bowed her head and told a store clerk "amastad" as we left the check out lane. The greeting was lost on the clerk, but the lady behind us in line burst out laughing.
My favorite definition of the yoga salutation is "the spirit in me, meets the spirit in you." I'm just hoping our spirits don't collide in a tangled mess on the living room floor. No matter how many times I ask her to stay seated, she pops up with anticipation every time the instructor introduces a new move, determined to follow along -- even with the most difficult upside down poses. I've found her one too many times precariously leaning bottoms up off the couch with one thin wrinkled arm pointing skyward and her head hanging low, twisted to catch a glimpse of the tv to see if she's doing the move correctly. I won't give in and do the seated version myself, so I now workout behind her recliner chair and add an element of balancing difficulty to my own practice, keeping one eye on the tv and one eye on my crafty, energetic Mom making sure that when we're all doing an up dog, her fanny stays firmly planted down in the seat.
It's working. I've been able to successfully police her pretty well lately. And, as an added bonus, because I'm behind her I no longer get her critiques. When I said aficionado earlier, I wasn't joking. She studies my posture versus the tv instructor and tells me exactly what I'm doing right and wrong with no mercy. When she gives me a "that's pretty good" I sincerely know I've mastered that move.

Sunday, February 28, 2010

My Mom and I watched part of the closing ceremonies of the Olympics tonight. While most people were tallying who won the most medals, who made the biggest triumph or overcame the biggest hardship, ours ended just as they began -- with a focus on hats.
From the moment the games began My Mom's been mesmerized by the knit ski hats, particularly if they have a tassel on top. In her opinion, Canada took the Gold, US with the Ralph Lauren offering a Silver. No other country displayed visible tassels or poms, disqualifying them from the competition.
I thought it was a novelty that first night, but I left for a 6-day trip to Florida and found her just as enamoured upon my return. We were watching some type of an Alpine event last Saturday, they panned the crowd and out of the blue she perked up, "there it is!" she said. I was dumbfounded. There was what? The network had taken a break from the action. What could she have seen? I rewound and in an instant knew just what she spotted -- a grey knit hat with a giant tassel on top perched on the head of a spectator. There were 12,000 people on the hill at Whistler. She spotted the one wearing her hat.

Now, let's review her condition. Next month makes two full years of living here. Every single night she's gone to bed and every single morning she's woken up in the exact same room. Not once has she found her way into the room or back out on her own. Only fifty percent of the time does she even know I'm her daughter. Just when it seems like a lost cause, enter wardrobe. Clothes seem to dress up the situation. A new outfit, or even a small accessory like a hat, can hide the distressing signs of her Alzheimer's disease like a good black sweater can hide a few extra pounds.
My Mom's always been a clothes horse. She was a career woman who married late in life. She liked to shop and being single, could afford to buy the best. Most of her labels came from Saks. My cousins tell me of how they used to go to Aunt Wyn's to borrow clothes, especially for fancy dances. I borrowed her clothes myself when I reached high school.
Now that I think about it, the day my Dad died I took my Mom shopping to distract her from the tragedy. It was March and the department store had 80-percent off all winter merchandise. We left with two armfuls of big name bargains. I felt rotten to be shopping when we should have been grieving, but honestly, they were good deals. (Like mother, like daughter... enough said.)
Alzheimer's seems to worsen during times of stress, so My Mom has deteriorated mentally quite a bit just in the wake of my Dad's death and subsequent move to Michigan. In other words, she's no longer into brand names, but she she still knows what styles work for her. She loves anything in black and white.
For the most part I accept her decline, it's not like there are a lot of choices. But I haven't gotten into researching the disease or worried about splitting the hairs over strict definitions of whether she falls into dementia or Alzheimer's. For the record, my new line is -- "No one knows how to define the disease. Her doctor classifies her condition as 'dementia as a result of Alzheimer's' which covers both," so if pushed, that's my answer. If forced to explain the disease, it's supposed to kill off brain cells, right? But that's where they lose me... does it?
She got a gorgeous black and white sweater last year at Talbot's. The next morning, eyes still closed, lying in bed she uttered "Is my new sweater still hanging on the door handle?" through a groggy haze. Now come on! Seriously, she was still half asleep. Even if she had taken a peek around the room, her eye sight wouldn't have been good enough to see the sweater hanging way over by the door. She remembered the sweater.
She's completely accepted that she can no longer wear heels, but she's become incredibly proud of her new white tennis shoes. "Those are mine," she says like Rain Man every time she sees them. I have to hide them at night or I'll find her in bed in the morning with the shoes on! You've already read about her attachment to the white slippers. So... you get the point. Her mind fails her in many ways, but when it comes to fashion, there's still a pulse. And it's pretty strong.
She's remained as dedicated to that knit hat for the past two weeks as an Olympian training in pursuit of a medal. I decided she earned a reward for maintaining this mental stamina and went on line yesterday to buy her a knit hat with a giant pom on top. Sadly, at the end of the season, I found pickings slim. But, like any good Olympian, My Mom has overcome this seemingly enormous obstacle. During a late night trip to the grocery store last night she spotted a super grunge guy wearing the very hat she wanted. She peeled away from me at paper towel and bee lined that grocery cart right to where he stood buying 32 ounce cups for beer pong to oogle over his lid. She looked past his tattoos, past the hoop ring protruding from his lip and another dangling from his eyebrow, gazing straight up to the white knit hat with a giant pom sitting on his head. "Where'd you get it?" she beamed. Luckily, he was a good kid and not only treated her with respect, but as if she were serious. He told her the name of the snow boarding store where he bought it and even gave her directions on how to get there. She listened as if she'd be heading over there first thing in the morning.
Luckily he didn't catch on that she was trying to get him to give it to her. Can you only imagine where that hat has been? But she tried, once again proving that like an Olympic torch, she's got a light that doesn't completely extinguish in that brain of hers. Some day soon she'll have a new hat to keep it warm. I just hope after all this effort she wears it.