Gems from Mom

I can tell when Mom is feeling better. Her sense of humor returns. Mom has a great wit and loves to use it whenever the opportunity arises. She also is not afraid of making a joke about herself. This past couple of weeks Mom has been in a more alert zone and less anxious, at times. And it is those times that I focus on, to get me through the not so great moments.

Two weeks ago both my girls and I, along with Mom, were in the kitchen preparing dinner. The chit-chat was light and fun. Somehow Mom got on the topic of the food bill. Food prices have sky rocketed. I do all the shopping, scouring food ads for specials, clipping and sorting coupons and making up a weekly dinner menu so I know exactly what to buy. I have honed this process down to a fine art. Feeling good about being a responsible shopper, Mom piped up and said that the food bill has gone up since I moved in. Now I take that with a large grain of salt considering that they were not eating healthy or a variety of foods prior to my arrival.

“Your mother spends so much more on food than when all the kids lived here,” stated Mom. “Well at least I’m not growing a pot plant in my room like someone else did,” I replied. Without missing a beat Mom deadpans, “If you could sell it for money that would be a help”. The girls and I howled and Mom was laughing, too! That was a great moment.

Then the other day I was grumbling about chauffeuring duties. It seems like I am always on the road for my daughter. And that is only one teenager. Mom replied, “I know – been there, done that”. As I was walking out the door I yelled back, “I don’t know how you did it with 5 kids. I would be insane!” “Well”, Mom paused, “maybe that is why I have problems today”. I laughed to myself all the way to the car. Making fun of yourself is a such a healthy sign. I relish this quick exchange of shared parenting.

You just never know if it is going to be an up or down day. You just have to wake up in the morning and pray for the best. God will take care of everything else.

And when those gems come along, making your day sparkle, you place them forever in your heart, allowing their light to shine through the dark times.

JaneEllen

Alzheimer's and Band-Aids

As a little girl, I would get the occasional cut. The best part of having a scrape was the band-aid. Of course the band-aids back in the day were bland compared to the colorful band-aids of today with a myriad of characters dancing across the thin strip. The worse part was when it was time to remove the band-aid. Dad had a way of taking it off quickly with one swift tug. As I got older I would try to take it off slowly, thinking that would be less painful. I was wrong. Ripping it off quickly may hurt, but the pain is over in an instant. And it is finished. Slowly peeling the band-aid prolongs the process.

Alzheimer’s is the proverbial band-aid being torn off slowly, over and over.

Mom has not been able to drive for over a year now. Her neurologist feels it is not safe for her to drive. We all agree. Except for Mom, who doesn’t understand why she can’t drive. Worse of all, she doesn’t remember this restriction on her independence.

Each time we catch her with keys in her hand we have to tell her that she is not allowed to drive. She looks incredulously at us. Defeated once again, Mom fades with each instance.

Yesterday, it happened again. She was going out. Dad asked her where she was going and she replied that she was going to buy a bottle of wine. This is a double whammy problem. Alcohol speeds up the memory loss process. So not only is she not allowed to drive, she can not drink, either.

I was working in my office and heard Mom asking why she can’t drive. Dad had to tell her that the doctor said she was not allowed to drive. He implores, “Please, Marilyn. You can not drive a car.” Taking a breath, he adds on the next blow, “And you can not drink any wine”. Her voice got louder and she was pissed, “I can so drive and I am going out!”

Sensing that Dad needed reinforcement, I pop into the kitchen t. It is so hard for him. He wants to take care of his wife, yet it pains him to not give her what she wants. This is his wife of 50+ years. He is torn. It is a no-win situation.

Standing next to Dad trying to appear as a united front, I state, “Mom, you can’t drive and you can’t drink wine. It isn’t just Dad and it isn’t just me. It’s all of us, your children and your grandchildren, who love you and want to take care of you”.

“Fine! I am a prisoner in my own home!” Mom stormed off.

It is times like this that I think of the band-aid slowly being removed, over and over. It never ends. And it hurts me to have to do this over and over. Each time it is like the first time. Each time it is a slap in the face for Mom. Each time she gets a little more upset. And the bitch of it is that there is nothing we can do about it.

I really hate this disease! I want to know why there isn’t any magic pill to treat it.

Instead, Alzheimer’s is a long and painful process where each day a new attack on Mom’s independence is waiting just around the bend.

JaneEllen

Connect the Dots

As a young child, I loved the connect-the-dots pictures scattered throughout coloring books. I would try to guess what the picture was going to be, as my pencil drew in the lines from one dot to the next. Of course as I got older, the predictions became easier.

Mom’s memory loss and confusion is just like the connect-the-dots pictures of my childhood. Only this time, the completed picture wasn’t the one I wanted to see. As I mentioned in my first blog, my suspicions were not good and I tried to justify each episode of forgetfulness or confusion.

At first I would tell myself that Mom was just worried about Dad, since his physical health tends to go in cycles. One afternoon Mom shared her fear of waking one morning to find Dad had passed away during the night. It was heart wrenching for me to sit quietly as her tears flowed, allowing her to be a woman worried about her husband and not the Mom who never exposed this side of herself. She needed to talk and needed me to listen. Despite the voicing of fears, it was a precious intimate moment shared between a mother and her daughter. I was honored to help Mom with her struggle. And of course, her anxieties over Dad had to be the source of her drifting memory.

Eventually, I had to ask myself how many justifications were too many? When do I admit that too many excuses have been made? At which point does the evidence that something is wrong become so overwhelming that I can no longer look the other way? How many dots did I need to connect?

Three years ago I could no longer reconcile what I saw with my desire to rationalize her behavior. There were times when Mom would use the incorrect word for an object. She would use the word mug for glass. Now we all do this from time to time, but we self-correct. Mom did not. Or there was the time she called Betty’s house and listened to Alex, stating that no one was home. Mom left a message saying hi to Alex, but could not remember Christopher’s name. She finally said, “tell….your brother… Memere says hi”. As Betty related this to me, I knew I could no longer ignore what was happening. I was sick to my stomach. And I felt all alone, for I was losing Mom.

I took Mom to my doctor, an associate of her and Dad’s doctor. I had given the doc background information and examples prior to the visit. She asked Mom a few questions and talked to her. After her “exam” she told Mom that she thought that Mom did have some memory loss and it could be due to Alzheimer’s. Later at home, Mom cried, stating between gulps that she didn’t want to be a burden for us. Again, I sat there and let her cry. This time my tears flowed, too. My heart ached for her. There weren’t any words of consolation. The folks at Hallmark had not written a card for this “occasion”.

By the time she went to the neurologist, she had decided that the first doc was wrong. I was not at the neuro doc visit. Both Mom and Dad told him everything was fine. He said she may have some memory loss, but never said the “A” word. That sealed Mom’s conviction that the first doc was wrong. She still speaks of her with such contempt that I have to do a double-take because Mom never talked about anyone in a voice dripping with malice.

Fast forward one year and two neuro check-ups later. Mom was scheduled to see the neuro and I knew that, again, she would say everything was fine. I called and gave him a list of observations of what had been happening in the past few months. All the sibs were worried. Our biggest concern was Mom’s growing confusion and her subsequent safety. I can still recall coming in during dinner preparation. A couple of pans were cooking on the stove while Mom and Dad played Yahtzee, their national past time. I asked what was for dinner. Mom looked at the stove and said, “I guess I need to see what’s cooking on the stove to see what we’re eating tonight”. That blew me away. Red flags popped up all over my mind.

After examining Mom, and reviewing my observations, the neuro took Mom’s license away. She was devastated. The “A” word was not mentioned. In fact, the neuro danced around the issue, stating that there are a number of causes for memory loss. Yea, right. Here’s the deal: Alzheimer’s is diagnosed once all other causes for memory loss have been ruled out. No matter how fast that neuro tap-danced, I knew in my heart what was happening. Mom was starting to fade in miniscule increments.

It was at this point that Mom and Dad decided to move to the “home”, as they called it. This was a facility with independent apartments along with step down care levels as the need arose. What happened there is another blog entry.

I look back now and sigh. I wish the dots had formed another picture. I wish the emerging picture had been one with a treatable condition. My wish was not granted.

Now I just pray for moments of clarity where my Mom, the one of my childhood and most of my adulthood, is sitting with me as we talk about the day’s happenings. When this happens, I want to freeze time and linger there a bit longer, savoring every detail of my Mom. In an instant it can be gone. Other times it lasts longer. And then she fades away, only to be replaced by her present-day self. Sometimes when her fog lifts it is more painful, for I yearn for the fog to disappear for good. It just sucks, either way you look at it. Those are my dark times.

In the meantime, I am learning how to wait patiently for a “my Mom” encore. Patience is not my strong suit.

JaneEllen

The Cowardly Lion

This entry is about one of my favorite kiddie holidays – Halloween. As I watched all the little ones come to our door, I couldn’t stop my stroll down memory lane. Mom and Dad loved creating costumes for us. The only time we had store bought costumes was the year we moved to Delaware. We moved in the day before Halloween. Needless to say, homemade creations were bottom of the priority totem pole.

The following year M&D outdid themselves. Lynn, Mike and I were transformed into the scarecrow, the tinman and the cowardly lion. Lynn suffered through a night of itchy straw as the scarecrow, Mike had to maneuver through the streets with silver painted corrugated cardboard wrap around his arms and legs as the tinman; and I had on a pair of dyed brown pj’s and a frayed rope mane as the cowardly lion. I, by far, had the easiest to wear costume. I loved it. in fact, I won an award at the annual Halloween parade. We never figured out why the judges didn’t see the three of us as one unit. Of course as the youngest of the “three older ones” it felt great to win something all of my own. What can I say? I can still tap into that childhood feeling of triumphing over my older sibs.

A couple of years later it was Patty’s and Betty’s turn to be transformed. Mom and Dad dressed them up as Jack-in-the Boxes. They were Jill-in-the-box and cute and fun to watch.

Mom didn’t stop making costumes once all of us were grown. Nope, she had a new crop of grandkids to fuss over and continue her creations. Adrienne took advantage of this desire. She asked for a fairy princess costume and Mom delivered. Adrienne loved her princess dress with its mounds of pink tulle and touches of silver sparkle here and there.

Then there was the year I tried to make Adrienne a poodle skirt. Mom and I shopped for the red felt material. I proudly displayed the finished skirt to Mom, only to discovered that we had bought craft felt. Craft felt stretches – in case you didn’t know this; we certainly didn’t. Poor Adrienne, by the end of Halloween night she was tightly gripping her skirt so it wouldn’t fall down around her ankles.

These are memories I tightly hold onto every day. I am ever so thankful that I can recall them in fine detail. I deeply regret that Mom doesn’t remember all of these times. She has snippets of it here and there, but the picture has holes in it like fisherman’s net. Some memories flow through while others are caught in the net, never to be released again.

I miss the Mom with all of her memories intact. Her joy has dimmed, just like her mind. As hard as I vow to rejoice in the Mom I had for so many years, there are times when the Mom with a blank stare saddens me. This is the struggle I face as we continue down this path. I fear the dark tunnel that lies ahead where the net will trap all of Mom’s memories.

Maybe I am the cowardly lion and I need the scarecrow’s intelligence, the tinman’s heart and the Jill-in-the Boxes’ joy to walk with me. Together we can help each other love and care for Mom.

JaneEllen

Musical Memories

I travel from time to time for my job. Tonight I was eating dinner at a hotel in Virginia. There were only a few patrons in the small restaurant. A baby grand piano sat In the lobby of the hotel. At the table across from me was an elderly couple. I easily overheard the husband ask if anyone played the piano. The waitress told him that patrons play and to feel free to play it.

Not more than five minutes later I hear a light tune wafting through the air. I tell his wife how wonderful it is to hear such lovely music. As a smile spreads across her face, she simply replies, “It is his birthday. He is 85.”

I lose myself in the melody, immersed in memories of Mom playing the piano.

Mom learned to play the piano when she was in high school. Attending a boarding school, gave her daily access to a piano. During those years, she had to memorize complete pieces of music to pass on to the next lesson. She continued her lessons in college.

With five children, buying a piano was not financially feasible. There were too many other expenses, leaving the piano low on the totem pole of priorities. Yet, her desire to have her own piano never waned.

Finally, with all of her children launched into adulthood, Mom told my dad and grandfather that she was going out shopping for a piano. They just looked at her and chuckled. That was all she needed. Determined to buy one, she headed out the door. Returning a few hours later, Mom announced she bought one. Mom was in her empowered glory!

She loved playing the piano. Dad would brag about her talent, causing Mom to pooh-pooh his admiring remarks. Of course, the rest of us loved to hear her play, too.

As the grandchildren came along, she would play songs for them. She really enjoyed passing on this love of music to them. In the picture, taken about 15 years ago, she is playing as two of her granddaughters scramble at her feet.

The piano has been silenced for years. Mom can’t play anymore. In fact, she hasn’t voiced a desire to play for a long time. I know she can’t follow the music. No one asks her why she doesn’t play; that would be a cruel slap of reality for her. It would be a knife to her heart and self-esteem.

Tonight, instead of dwelling on her inability to play, I am focusing on happier times of her tickling the ivories for us. It lifts me up. I can see her play one of my favorite songs, El Toreador. As she finished the last note, she turns and takes a bow. We enthusiastically applaud, as if she is playing Carnegie Hall.

Thank you Lord, for giving me these precious memories that Alzheimer’s will never rob from me. Her music accompanies us as we travel down this path together.

JaneEllen

The Beginning

Several years ago I noticed Mom was beginning to get confused when organizing big family dinners. Ours is a family of two parents and five children. Big family dinners was an everyday occurrence. As a stay-at-home mom, which was the norm back in the day, she could handle the every day ups and downs and intermittent crises. In fact, she loved planning the meal, choosing special traditional family fare and cooking. And oh, how she could set a table! We didn't have much Waterford crystal or Royal Doulton china, but the table sparkled with her personal touch of flowers from the garden, lace linens and her wedding silverware. When I think of hospitality, visions of Mom's holiday table flash across my mind. It was her personal signature. She set the bar high for us to follow. And truth be told, I have never quite been able to emulate her style. Mom’s style is a tribute to the classic days of yore.

But that started to change. It was such a imperceptible shift that everyone missed it, except me.

I have been blessed (or burdened, depending on your point of view) with the gift of keen observation and vivid memory. When I saw Mom trip up on the comings and goings of the holiday activities, I knew something wasn't quite right.

The first time was at Christmas. By this point we were all adults with families of our own. Some of us were married, some divorced and most of us with children. All in all there were 19 of us at a family dinner.

That year we decided to have a girls lunch with Mom, my sisters and sister-in-law. Unfortunately, due to all of our schedules, we couldn't make it to just one lunch. The simple solution was to have two lunches with some of us going to both and some attending only one lunch. Mom was completely confused as to what days we were going, who was going when and where we were meeting. Although it was discussed over and over, she couldn't retain the information.

I chalked it up to the holiday rush. I didn't want to go any further than that. Looking back, I am pretty sure there were whisperings in my mind that Mom's confusion went deeper than hubbub of the holidays. I just couldn't go to those dark corners where my fear resided. I didn't want to venture there, not yet anyway. I just wanted to immerse my being into the well of family love that accompanied all of our family gatherings. We were a blessed family - and still are, just in different ways.

JaneEllen