Certain Things are Apparently Unforgettable (written January 2009)

I knew the transition of moving from Florida to Michigan would be confusing for my Mom. Daily I remind her that she now lives with me. Nightly I remind her that the bedroom is in the opposite direction. I honestly thought that after a while she'd catch on and accept her new surroundings. Well, she's pretty content -- but, as I say repeatedly, she's yet to find the bedroom or bathroom on her own.

In passing discussions, I've agreed with others that anything new in her life will be difficult for my Mom to remember. She seems to have much more trouble with short-term memory than long-term. Makes sense to me. Or at least it did, until... we bought a new pair of white slippers!

They hung on the clearance rack at Target. $1.99 for a terry cloth pair of slippers with poms as tassels. A total bargain, but super bad idea for a lady that has no peripheral vision and trouble walking. They didn't seem all that safe.

My Mom was beyond enamoured with both the slippers and the bargain. I bought them. I figured we'd get them home, she'd go to bed, I'd throw them out and we'd all walk safely into the next day. I was sooooo wrong. First, she had to sleep with the slippers. Under her pillow. The next morning she had them on before she even thought about stretching out of the bed. We had to admire them throughout the day while she tilted her foot to and fro. It was hilarious. (And I guess not that unexpected. Friends and family call me "Imelda" for my shoe collection, the truth is they should call me "Wyn." Pre-kids, my Mom was known as quite the clothes horse and she still is. More on that in a different entry....)

The slippers remained a hit for two full days when an all out tragedy struck (Luckily not a safety issue, she walks in them just fine.): one of the cheap $1.99 poms fell off, knocking that new shoe smile right off my Mom's face. She was devastated. Luckily I still had the sewing kit she gave me as a gift long ago. To my surprise she sewed that pom back on by herself. I was floured.

And it didn't end there. For the next two weeks wherever we went she recounted the story of her new slippers. In great detail she'd explain how she found them on sale, how they used to have two poms, then one fell off and she sewed it back on. (That pom stuck, but another fell off and we never found it.) So she'd end the story by explaining the loss of yet another pom and how she cut one off so now each slipper has one pom.

Those damn slippers have now become my greatest nemesis and my greatest joy. As you can see by the photo she still sleeps with them often, now evidently secure enough to leave them on top of the pillow. They're practically worn thin. Every time I see them on her size 9 feet I have to chuckle. I think she loves them more than me. I've bought replacement slippers and she'll wear them, but she'll always check to make sure the white ones are still in sight. "Those are mine," she says.

She doesn't have to worry about them going anywhere. I have a secret plan to someday let her wear them in her final resting spot. They not only brought her a ton of joy in her new life in Michigan, but they serve as a great reminder to me, as her caregiver, to always give her the benefit that she's mentally not as far gone as I sometimes might think.

Memories... (written April 2008)

One of the number one things people ask me is if my Mom remembers that my Dad died. The answer is yes. Always. For some odd reason, the woman, who has yet to find the bedroom or bathroom in her new home, has never forgotten that my Dad died. I'm so thankful for that. We only had to tell her once. Not one other reminder.

She genuinely seemed to understand the funeral proceedings. She mourned and acted every bit a grieving wife. It's the first time ever I didn't want to curse this horrible disease of Alzheimer's. Her brain allowed her to absorb and react to my Dad's death. For a little while anyway. Then her fragile mind healed the pain almost instantaneously, tucking it away in a distant memory.

The situation surrounding his passing now changes dramatically depending on when the topic is discussed. First, she seems to think it happened a long time ago, not last month. She tragically recounts that he died "so young." If you didn't know, he was 92. And finally, she also tells how he "suffered for so long," which also really wasn't the case. He had lost a lot of weight in the last two years and went downhill with weakness in the weeks before his death, but not in the tragic way she'd have you believe.

Sometimes I'm not even positive whether she's referring to my Dad or hers... Although her Dad also led a fairly long life and from what I can remember, didn't suffer a long illness either. I'm really not sure where the drama comes from.

Once in a while I'll remind my Mom that her husband was 92 and lived a long full life, but for the most part I just let the facts free flow wherever her mind wants to take them. It doesn't seem so important that she remember each and every detail over the death of the love of her life, but rather that we keep memories of him alive. It's also encouraging that she accepts her life now and where it's going. So far she's coping really well. I couldn't ask for more.

I'm So Not a Saint (written February 2009)

I called my sister this morning and told her she could pick her Mother up from the Pontiac Homeless Shelter. It was the first really bad day with my Mom and I was through. Just like that. I didn't even have the patience to enroll her in a facility, the paperwork would have taken much too long. A curbside drop off at a temporary safe haven was all I could handle. I figured someone would help her inside. My sister would get there when she could.

One of the most awkward conversations about caring for my Mom is when people tell me I'm a saint. It happens a lot. I wish it were true. I mean just about anyone would like a free ticket into heaven, right? All along I've said I'm not that amazing. Today I proved it. One bad day and seriously, I quit.

When you hear what pushed me over the edge, have a tissue ready -- not because it's sad, pathetic or heart wrenching -- no, it was so ridiculous it made my sister cry laughing.

We were standing in the bathroom and I gave my Mom a squirt of Dial soap to wash her hands, that ingrate looked at me with absolute disdain and said "Thanks big spender." I'll admit, I only gave her a dab, but that's all she can handle. If I gave her any more she'd never be able to rinse the suds off. That was it. The last straw. The audacity. After all I'd done for her. I gave her the entire bottle, told her to take as much as she wanted (it had 25% extra) and I stormed out. She could go inflict her cruel comments on someone else. The minute I uttered the story out loud, I broke into hysterical laughter. I enjoyed the comic relief, but it didn't change the situation, I was still fed up and my Mom could move out.

The big spender line was the final straw. The truth is frustration had been mounting for over a week. I just didn't recognize the severity until I snapped. My Mom suffers from recurring bladder infections. They are very common in the elderly and very frustrating. First, older people do not show signs of fever, blood in the urine or any other typical symptoms of infection. Instead, they show you their alter ego. A 180-degree change in personality. So my happy go lucky Mom becomes obstinate and ornery. The antibiotics can sometimes make her paranoid, even more disoriented than usual and this week gave her insomnia. That woman was up all night every night and getting into everything. I left her alone for an hour one night thinking if she was bored she just might fall asleep. Oh no, I came in to find her fully clothed, seven layers deep! Seven layers of shirts and six or seven layers of pants all piled on her skinny little body. A nice mix of pajamas and street clothes. The next night she locked herself in the bedroom. I found myself at 3:40 am, laying outside the door in misery, coaching her on how to find the light switch in the pitch dark room, then how to unlock the door. I watched the sun rise two mornings in a row, as she finally fell to sleep.

Desperate to reclaim a schedule, I didn't let her sleep long. I went back in at 10 am to rouse her and wow did that lead to all out fights. I wish the blog had sound effects. Imagine "Get out!" in an Exorcist type tone. And an angry "Leave me alone!"
When she finally gets out of bed, she turns her nose up at every meal, thinks every outfit is ugly and throws "I won't" tantrums that could rival a terrible two's toddler.

So, in my defense, it's been a long, painful week emotionally and physically. But today's the first day I'm really mad. And even though I've claimed all along that I'm no angel, I'm a little shocked at my over the top reaction. Here it is, the first really bad day and I'm not only throwing in the towel, but I'm stuffing it into a Molotov cocktail, ready to let the whole situation explode!

(September 2009 note: I've now survived six bouts with bladder infections. And I mean "survived." For us, they by far present the most challenging obstacles in our mother/daughter relationship. And we've done it without a trip to the homeless shelter. I may not be a saint, but that's truly miracle!)

Age ... Who's Counting?? (written May 2008)

"Get me out of here -- you know I can't stand old people and cripples!" -- I experienced my first utter humiliation after becoming a Mom to My Mom. We went for a simple visit to the adult day care center at the Older Persons Center in Rochester, MI. Supposedly one of the top rated facilities in the country. My normally demure Mother did not wait until we had a private minute, she robustly vocalized this statement loudly in front of the director of the program, the staff and most mortifying of all, the participants! I was embarrassed, disgraced and tried to remember what I had done to her as toddler that perhaps led to this retribution.

I also wondered what happened to her sense of grace, and what the hell happened to her math skills? (She spent a career at Chrysler in accounting.) She was undeniably older than almost everybody at the center that day.

In Florida she and my Dad hung out with people easily 20 years younger, but she has to know she's aging... Doesn't she???

Shortly after she told me I was one of her best friends. Well, I hope so, but I felt the need to remind her that I was also her daughter. She vehemently claimed she never had children.
We now have had this discussion repeatedly. Each time I tell her, in bedtime story format, that she met a wonderful man when she was 40, married at 41, had me at 42 and my sister at 44. Each time she's filled with a sense of wonder and awe that she just may really be my Mom. When I remind her that's why I call her Mom, she usually buys the story. (For the record, there are times, usually during midday, when she remembers she has daughters all on her own.)

I recently pulled out old photos to reinforce her maternal history with me. She lit up at a photo from my first birthday and even said "there's my baby!" I was so excited. Progress. "See, you do remember. That was my first birthday," I said. She looked at me quizzically. "Now, come on -- how could I remember that?! I would have been what, two?!"

Oh, the comedian! And, oh, my frustration! I would LOVE to know how old she thinks she is. I ask all the time, but she's clever enough not to answer. She knows she doesn't know. But she's positive I'm a practical joker when I insinuate she's 87. I periodically ask questions to help narrow down her current mental age. If she doesn't remember having me, she's at best in her 30's. One time when we were coloring (a new favorite activity) she said "If anyone came in and saw us right now they'd think we were crazy. Us being done with high school and practically in college." She often introduces me as her sister, but at what age???

Back to the adult day care center. I immediately found the opportunity to vocalize my concerns and an apology, privately -- straight to the director. I realized I really needed their center. I went there because I couldn't provide all the stimulation she needed single-handedly at home. I wanted my Mom to participate in singing, exercise, and arts and crafts classes. Now I knew our need was far more urgent. She won't be able to stay with me forever and she is going to have to start getting acclimated to being around people her own age. Her real age. Donna, a saint, explained the behavior was normal (for lack of a better word) and even let me in on a huge secret -- half the people there think they're "volunteers", strictly on site to help others. Viola! I signed my Mom up immediately to be a volunteer in the program. (2009 note: it took several tries, over the course of a year, but she now attends regularly.)

With the day care center enrollment worked out, I honestly don't know why I'm so concerned with trying to unravel my mom's current mental age. On the positive side, if she's not 40 yet, than neither am I -- I can roll with that. Thank you Mom, not only for the gift of life -- but now helping me shave a few years off!

Name Game

The Detroit Zoo has asked for help in naming twin Lemurs. After seeing their picture in the paper last night, my Mom said "well, that's Peekaboo" pointing to the one on the left.

I asked what the other one's name was and she said "well, Yankee Doodle."

Peekaboo and Yankee Doodle!

I laughed so hard we called the zoo this morning and entered her in the contest.

After that we cozied up with a horse magazine and chose names for horses. She's really good at this naming thing! Top two horse names: "White Rover" for a giant light grey and "Prime Minister" for a very regal looking dark bay Dressage horse.

This could be our new boredom activity!

Oh the Places You'll Go!

At least once a day, as I take my Mom on some crazy adventure, I think to myself, "if my Dad could see this"... and then I have a little private chuckle. He knew, at least more or less, what my Mom would be in for if she came to live with me. My sister did too. So in general, I don't have to offer a lot of apologies.

In the background article I said I like to "ride horses, socialize and travel" -- that was my polite way of saying I am busy, semi-selfish and the least likely person you'd ever choose to be a caregiver. Having said that, I love to cook and entertain, I'm tired of living alone and have a deep regret over not having children. This was the perfect opportunity to give parenting a try -- luckily my Mom's a full grown adult and I can do it my way. (Which means without sacrificing a whole lot, the perfect message for people wrestling with the decision to give parent care a try or not: Caregiving does not have to be an imposition or restrictive, at least not as far as I'm concerned.)


My sister and I learned to read with Dr. Suess books. My Mom collected the ENTIRE set. When I say "learned to read", I use the phrase loosely, especially in the pre-kindergarten years. I remember a cousin bringing his girlfriend over for a visit and I recited Green Eggs and Ham, completely from memory, with page turns and all. As I write this, I'm thinking I need to add "Oh the Places You'll Go" to the set for my Mom.

The most lasting image I'll have of this caregiving experience is glancing over and seeing my Mom riding shotgun in the car. She loves it and I love having her along. The enclosed cabin seems to help her brain focus. We have some of our best and most lucid conversations in the car. We laugh, sing, point out beautiful gardens, pretty houses and even cloud formations while we drive. It's some of our best quality time. I'm always encouraging my sister to take my Mom for a car ride -- I'm sure she thinks I'm a nut!

I'm usually running late, so she often has a breakfast bar or sandwich on her lap. Yes, I confess, she probably has one meal a day on the road. That's definitely an "if Dad could see this" moment, especially if we've grabbed chicken nuggets at a drive thru. (She and I both detested fast food in the past, but her taste buds have changed and my need for convenience has grown!) Even if it wasn't a nutritional requirement, I'd feed her a snack of some type on the road. If she's not busy in the passenger seat, I'm plagued with "this is a long ride" over and over, even if it's the three minute trip up to the corner grocery store.


Oh, and the places she goes!
Starting from day one I've hauled my Mom around with me just about everywhere I go, including wine tastings, horse shows, even a Botox appointment. (She expressed absolutely no interest in the bizarre looking procedure, nor an ounce of motherly concern that it may inflict pain. Her only question as the Dr. poked needles directly into my forehead was if that was me in the chair. "Is that Mary?" she kept asking, keeping a constant vigil, probably worried she might miss her ride home.)
We go to the library and book stores. Even though comprehension isn't there, she still reads voraciously and appreciates being surrounded by books.
We go to church every week, festivals when we can, landscaping nurseries to walk through the flowers and sometimes even the movies, although most of the time she finds them too loud.

Restaurant experiences are always fun. My Mom moved from a rural part of Florida, where the most exotic type of eatery might be a bar-b-que, back to the Detroit area where she's now experiencing a much broader menu. I like to shock and surprise her, so our first adventure in dining was to a Greek restaurant where we taught her to "oopa"! As the waitress brought the cheese to the table and it poofed into ceiling high flames, I thanked God my Mom has a strong heart and her thick head of hair did not get singed. She loved the experience so much that she now yells "oopa" whenever she sees the flame, even if the Saganaki is being served across the room. And sometimes when it's not Saganaki at all... We also frequent a Mexican restaurant and one Sunday night the waiter was delivering fajitas to a table -- the platter spewed smoke and my Mom yelled, you guessed it -- "oopa"! The crowd sitting around us lifted their margarita glasses, gave an "oopa" cheer themselves and had a huge laugh.

When I travel with my Mom, I have to be prepared for that type of interaction. Everywhere we go she draws attention. We're like a traveling ministry to people healing from past pains. Women and men, sometimes even children, share stories of their own parent or grandparent. They often grab my mom's hand or even a chair and join us. She's loves chatting with people, so I encourage it.

For a while I took her to a local pub for sing-a-longs on Wednesday's. On those occasions I wished so much that my Dad could not only see where we were, but join us. The singer always took time to personally walk over with his guitar and serenade my mom. Together they'd croon John Denver's "Take Me Home Country Road," putting a huge smile on my Mom's face. I always thought we were at singing therapy, but one night he explained that he had been watching us. He was battling the decision on whether to keep his mom at home, or find placement. That night, I knew my Mom and I had a calling to help others make that decision.

I want to make people aware of the immense rewards of keeping a parent at home, but I'm also quick to warn that my Mom is what in the horse world we would call an "easy keeper." She's super happy, content and fun. A real joy to have around. That's not the case with many Alzheimer's patients who cannot tolerate too much change or stimulation. Many, sadly, also grow very mean.

Taking the imposition out of the relationship does require some creative give and takes. And they change constantly. For instance, after watching other moms read while their daughters rode, I gave myself permission to let my Mom sit in the car by herself for an hour. I leave her with treats and something to read while I'm in the barn and I park where I can keep an eye on her and she can watch us ride.

I also had to learn when it was acceptable to leave my Mom home. If she had her way she'd be included in everything, even dates. I had to learn not only where to draw the line, but that it was okay to draw a line. I worked soooo hard at making it not seem like a sacrifice to include her, it seemed wrong to ask for a little time off.

But, there are times when I need a break. And I'm learning to take them.
What I'm trying to achieve now is a healthy balance. I really hope my Dad can see that, because I know he'd be proud.

Blog Backlog

You'll find a flurry of postings for September. That's because I don't think the website will allow me to cheat and go back and put one posting in each month since the first of the year so I could dare look productive and organized.

Whether it's due to my chronic procrastination or a completely erratic schedule since I've had my Mom as a roommate (a topic for a future blog), at least I'm finally following through with publishing entries.

I've had my Mom now for a full year -- I've been cataloging our journey since day one. So, we'll start the first week or two with a burst of activity, then taper off to a manageable pace.