The Memory Keeper

Available Now on Amazon and Kindle

I am a writer.  That's difficult to say when I'm so busy being a caregiver for my mother who is 99 years old and has had Alzheimer's for 15 years. Mom lives with us.  She is in advanced stages now but was exhibiting signs of Alzheimer's even while my husband and I cared for my father who also had Alzheimer's.  No one...NO ONE is prepared for this!  There's no caregiver's manual that tells us how to do this job.  I decided that as a writer it might help others  to write about caregiving in the non-clinical, in the trenches, personal experience, kind of way.  I have found ways to help myself out of my depression, anger, denial, impatience, sadness, and frustration.  I've discovered so many things to help me through the most difficult job I have ever experienced.  How could I do anything BUT write about this to help others? My latest book, The Memory Keeper, is the fourth in a the series of our journey and experience  dealing with the devastating disease and condition. It was a cathartic process to share my words, my thoughts, my emotions.  They are sometimes raw, sometimes irreverent, often loving.  I am resolved and accepting of what is to be, in a philosophical kind of way; but I also see the humor in some of the events that lead us there.  Because of my writing style and the way I deal with the often taboo subjects (that one simply doesn't discuss in polite society!) many others have written to me thanking me for my candid discussion of these difficult issues.  One reader who attended a book signing proclaimed that my books were like her own personal therapy sessions.  Many have thanked me for giving them permission to laugh through their tears.

In my book, The Memory Keeper, I take it upon myself to record and retain the legacy that my mother leaves as I grapple with my own emotions and difficulties of caring for her.  Her memories are lost...imprisoned in the disease-ridden brain that doesn't allow for thoughts, speech or even physical control.  I alone must pass down the family stories.  I alone must chronicle the life of the wonderful, beautiful, elegant, vibrant woman who used to reside in the body that sits quietly now in our family room staring at the television without understanding.  The weighty responsibility of caregiving reminds me that while we are still able we must make the most of each moment.  We must embrace the opportunities when we can to share stories, to ask questions, to spend time with each other, and to cherish life while we can.  I am resolved...yes.  It is too late for tears.  It is time to smile about my mother's  life well-lived.

In the words of Dylan Thomas: 'Do Not Go Gentle...'

I cannot believe that it is December again.  I am not ready for another holiday season and yet, before I know it, it will be over.  I feel like if I blink it will be Spring.  It speaks to the importance I MUST place on each moment.  I have allowed the moments to slip by.  How else can I explain this year?  The days...often filled with frustration, stress, worry and exhaustion have raced by.  Wasn't it Easter just yesterday?  Wasn't I celebrating the arrival of 2017 a moment ago?

Ah, sadly, my mother is slipping away all too quickly.  How do I slow the days down?  How do I hold her last moments (so infrequent) of lucid thought?  I looked back to a year ago.  I wrote about the hectic days, the craziness that precedes Christmas.  At that time my mother was receiving hospice care.  We thought that she was experiencing her last days.  Suddenly, she bounced back -- a full recovery!  It was a Christmas miracle of sorts.  I worried that at any moment she could take a turn for the worse and lapse back into the comatose state she was in that prompted a call to hospice in the first place. But days and weeks turned into months.  My productivity slackened as I spent more time with her, watching, caring, administering, but mostly just sitting.  Her interest in everything had waned.  Her communication was minimized and her comprehension was severely limited. So why didn't the days drag?  Why is it that the less I did the faster the days seemed to fly by?  Isn't that counter-intuitive?

I have gone over and over this past year's events; the conversations with friends, the dinners with family members, the laughter and good times, the deep discussions, and playful moments with my spouse.  I thought about the entertaining we did, the tea parties, the small dinner parties, the funny moments with Mom and the not-so-funny moments that Alzheimer's brings as well.  None of it...NONE of it was more than a moment ago, I tell you.  What a nasty trick the Universe plays on us.  The older we get and the less time we have, the less time it takes to get there.  I am suddenly reminded of the poem by Dylan Thomas which made no sense to me when I was a young girl studying famous poets. The lines resonate with me now: 'Do not go gentle into that good night. Rage, rage against the dying of the light.'  Well, I am raging indeed!  I am raging for my mother who cannot speak to it herself.  I am raging for myself as I witness the limited time ticking away.  I am raging for all of those people who helplessly witness lost time with loved ones and wish that they could harness the minutes to hold them for just a while longer.  

Tonight as I go to sleep I will focus on the minutes.  I will treasure each second, each breath with a new-found appreciation.  And tomorrow, as I awaken to a new day, I will promise myself to enjoy the time that I sit with my mother doing absolutely nothing but sharing space and air together.  She may not think about it, nor remember it, but I will do so for both of us.  I will look at her gnarled arthritic hands, her face lined with years of expression, from love, disapproval, smiles and frowns, joy and sorrow. I will look at her silky white hair lying limp and thin on her pink scalp.  I will apply lotion to her wrinkled skin hanging with uncertain direction off of delicate bones. I will marvel that a person of 98 years is still able to be as mobile, as agile while she lifts her legs to assist me in putting on her socks.  Her questions, her comments, as limited as they may be will register in my brain and store in my memory.  "Who am I?" I will ask her.  She will answer one of her many ways.  "Are you my neighbor?  Are you my mother? Are you my friend?"  I will smile. "Yes, I am," I will agree to whatever she chooses to define me.  I will take it in, all of it, because it will be a day from now or a year from now that I will look back and rage against the diminishing moments..."Where did the time go?"

Congrat-u-burstans! And Many More

We have noticed that Mom's aphasia has become more of a regular occurrence.  It used to be an occasional anomaly but now, with regularity we hear strange words and outrageous sentences on a daily basis.  A couple of days ago, Mom got up and walked out of the room then returned within thirty seconds.  I asked what she was doing and she answered, "I was reading the...uh...regular people."

I didn't know what she meant.  I asked for a clarification.

"I...er...I was counting the...place-ter."

"What?"

"The plates," she corrected.

"What plates?" I was looking around wondering what she meant.

"You know!  For the people."  (Okay, I was beginning to catch on.  It was close to dinner time.  Perhaps she thought that she would set the table.  Who knows?)

I tried to get more from her and she provided some unintelligible words that meant nothing.  There would be no understanding and I finally gave up trying to understand the 'coded' message.

Just then Skip walked in the room.  He mentioned that his birthday was going to be the next day and Mom immediately brightened up.  With a broad smile she told him, "Congratuburstans!  And many more."  I couldn't help it.  I began to laugh.  The word just tickled my funny bone.  The more I laughed the more it repeated itself in my brain.  'Congratuburstans' .  Ahhahahahahahaha.  I had to get up and leave before Mom noticed that I was laughing.  I didn't want to laugh at her but I couldn't help myself.  There are moments of hilarity that make me feel guilty.  However, I quickly recover reminding myself that laughing is helpful...laughing is therapeutic.  These days I definitely seek anything that I consider therapeutic to help me through some of the rough patches.  The rough patches are becoming more and more numerous though. While laughing over a funny word is something noteworthy, I often must seek the opinions and reactions of others to find the humor in a situation, action or incident.

An example occurred today when I discussed the events of Skip's birthday party with a fellow caregiver.  I recounted the frustration I had felt over the  bizarre behavior Mom exhibited during the party.  I had worked hard to keep it a surprise and even fed Mom lunch ahead of time so I wouldn't give any indication that within 1 hour there would be food at the party.  Skip was surprised when guests arrived with potluck dishes and abundant amounts of food and snacks.  Unfortunately, so was Mom.  She was thrilled to see every manner of snack, appetizers and tasty morsel present itself on the dining room table for her munching pleasure.  I reminded her that she had eaten lunch earlier.  I told her to 'go light' on the snacks because it would be easy to overeat and then become sick to her stomach (something she does with regularity).  I immediately realized that this was a futile conversation.  Mom was glued to the table.  She waited until I turned my back.  Then, her hands flew to the chips, the dips, the cookies, the sausage balls.  She grabbed anything and everything her fingers could reach with the agility of a professional pilferer.  Squirreling her delectable treasure away in her walker or within the folds of her shawl, she would exit to enjoy her 'booty' privately and without risk of detection.  At one point I looked up from my seat in the living room where I was enjoying a conversation with our daughter in time to see her rushing out of the dining room into the foyer where she removed something from her mouth and threw it into a potted plant.

"What are you doing?" I yelled.  She ignored me.  Skip was right behind her though and looked into the planter to find a shrimp tail.  Mom was still chewing the piece of shrimp while saying that she wasn't eating anything.  My daughter got up and suggested that she make a small plate of food for my mother to keep her busy and out of the dining room where there were too many choices and certainly foods that she shouldn't eat.  We sat Mom down at the kitchen table with her spread which she dispensed with quickly and efficiently.  Before I turned around she was back in the dining room.  I found shrimp tails deposited in various hiding places and became quite cross with her.  While tempted to say that she didn't know any better, it was clear that she was a woman on a mission each time I told her that she had probably had enough to eat.  She either ignored me or would circle around the other way to avoid me and then enter the dining room from the other side.

Our son, Bill finally closed the dining room door as Mom was headed in for her eighth or ninth visit to the table.  I watched as she stopped for a moment, then rapidly turned her walker mowing down a couple of guests as she rushed to the other door before our son could get to that side.  Who says that 97 year olds can't be agile?

Later, after the guests had left and the food had been put away, I noticed that Mom was eating something as she sat watching TV.  "What did you find, Mom?" I called to her.  She hastily hid the morsel inside her walker as I approached.  "Mom?  What is that?" I repeated.

"What?" she asked innocently.  I began explaining how she couldn't sneak food into her walker, her shawl and myriad other hiding places.  She gave a blank stare and in total exasperation I walked away deciding that it wasn't worth my energy to deal with it.  I was tired and ready for the time when I could tuck Mom into her bed for the night.  A little while later, as I was helping Mom into her nightgown I asked her to hand me her hearing aid.  She reached up to her ear and gave me a confused look.

"ARGH", I thought. "Now she doesn't know how to remove her hearing aid!"  Then I noticed that her hearing aid was not in her ear.  "Where is it?" I asked her knowing full-well that she wouldn't be able to tell me.  I shouted for Skip to look downstairs and I continued to help her into bed.  When I returned to the family room Skip was holding the hearing aid and telling me that he found it.  "Where was it?" I asked.

"In the trash."  We both sighed

My friend listened sympathetically but also laughed loudly as I described the events that left me frustrated and exhausted. I began to realize how ridiculous and crazy everything sounded to the outsider.  Thinking about it, I began to laugh as well.  Soon my mood lightened as I considered the funny side...the jokes that could be made.  Unwittingly my mother was providing lots and lots of material for our stories, our memories, our reminders of family gatherings, occasions, and times that we will recount in years to come not with anger, exhaustion and frustration but with smiles, laughter. and perhaps a few reminiscing tears.

The Last Christmas Cookie

The Last Christmas Cookie

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I finished washing the dishes and putting the crystal away.  I wiped away the spills and crumbs from our New Year's Day celebration and thought about the holiday season.  There was a bittersweet quality to my memories.  It had been a busy, chaotic season.  So often I had thought about my mother's condition as I kept striving to create a memorable holiday.  I had cooked, baked, decorated, planned, wrapped, shopped and cleaned.  I had cared for Mom, saw to her needs, and adhered to her schedule.  It was incredibly stressful.  Her Alzheimer's disease was progressing to the point that I often had to stop what I was doing to take care of issues I had not even imagined earlier.  She required constant supervision while awake. I called it the 'Shiny Object Syndrome'.  Mom was attracted to anything new and different.  She touched, tasted, and took anything that interested her.  If I turned my back something might go missing or worse; something might end up with a thumbprint in the middle or a nibbled corner.  It didn't matter how many cookies she sampled, she would forget and look for more.  Trying to put together holiday treats, gifts, and preparing for parties and entertaining was beyond difficult.  As I thought back about the events of the past month my eye caught a plate I had missed.  It held one cookie.  I was about to toss it in the trash, filled with resolve to remove sugar from my diet when I stopped myself.  It was the last of the Christmas cookies and the symbolic meaning didn't escape my notice.  To me the cookie represented the joy of the season, the memories created, the laughter, camaraderie,  cheer.  Within its tiny circumference was a world of emotions: the happiness and the reminder that the Holidays were over. 

 I thought back to Christmas Day.  We had gathered at my daughter and son-in-law's home to enjoy another wonderful Christmas. I looked around the room filled with loving, smiling faces.  There were our two children, our two grandchildren, our son's girlfriend, our son-in-law, our family dog, and my mother.  It had been difficult thinking about how to get Mom there.  How would we pack all the food, the presents, the dog and five people in one car?  We decided that we would take two cars.  Problem solved!  Now another issue: could Mom navigate her walker around the house?  Could she manage to last the entire day and evening?  Would she be safe?  How would she deal with the car ride?  I was glad that it all worked out regardless of how closely I watched Mom, how I fretted about her dropping something, breaking something, doing something socially unacceptable.  I carefully regarded her choices of foods knowing full-well that she was incapable of making choices and might easily overeat, become sick, and end a lovely day with a quick exit for home.  I monitored her movements, her needs, her facial expressions to determine what she might require, what she wanted, and where she was thinking of going.  I was reminded of those days long gone when the children were babies and visiting was a chore as I supervised, disciplined, corrected, and worried over each action and reaction.  Once again I was thrown in the roll of mother to my own mother.  Yes, she was now a child -- a two-year-old.  

At the end of the day, as I helped Mom into her nightgown and under the covers, I asked her if she had enjoyed the day.  "Oh yes!" she replied.  I reminded her of who she had visited, what she had eaten, and the gifts she was given.  She smiled happily and burrowed beneath the blankets already closing her eyes.  I could see that she was tired.  Her mind had fallen asleep hours earlier.  Now it was time for her body to catch up.  I sat down with my husband, Skip and talked about the day.  I remembered to text our daughter to let her know that we had gotten home safely.  She replied that they were watching movies of old Christmas celebrations from other years when my father was still alive.  Part of me was unhappy to miss that but another was relieved.  I knew that watching old videos would only serve to remind me of how quickly things change...how soon our lives move from child, to adult, to elderly, then (all too often) back to child.  I immediately grew sad.  I thought about those fun times when my parents (even younger than Skip and I were now) would drive to our home to be with us and the children on Christmas Day.  Now, my father was no longer with us and hadn't been for some time.  Soon, Mom would also be gone.  She was still healthy and physically doing well but I had been warned that as Alzheimer's progressed her body would begin to shut down.  Was this her last year with us?  Was this the last family gathering with her?  I wondered how many bonus days we could enjoy.  I found myself thinking forward.  In June, Mom would turn 98 years old.  Would she still be with us?  I grew more and more saddened as I thought of the events that were so important to us...those events that brought us together in celebration.  Now, even if we still had Mom with us, it would be stressful, less satisfying, more work, riskier to take Mom out. 

People have often remarked when they see me with Mom that they wish that their parents were still with them.  I  think of that now.  How I wish that my mother...the mother who once was, could still be 'with' us.  The following  morning as I greeted Mom upon her awakening, I asked her if she had enjoyed herself the previous day.  She gave a blank expression.  I reminded her of the gathering for Christmas.  She replied that she didn't remember.  We talked about the food and the gifts and still there was no spark of memory.  I felt a lump growing in my throat.  I suppressed the tears.  Mom was not 'with' us on Christmas Day.  Sadly, Mom would not be with us for our birthdays, for holidays, for family celebrations, for events.  She would never be 'with' us again.  Yet, we could see her, touch her, hear her voice for now...for another day, another, week, month, year.  There was no telling how long.  I  told myself to cherish each second regardless of the stress, the worry, the bother.  

It is now the beginning of the new year.  I used to look forward with excitement and high expectations, but now I dread it for it brings forth a silent testament of how quickly things are changing...moving towards yet another change, another loss, another sadness.  I thought about this.  My attitude had definitely shifted.  It was like looking at the crumbs from the last Christmas cookie.  A season had ended and for the moment there seemed  little to anticipate with optimism. In fact, I noticed an insidious pessimism creeping and permeating my emotional well-being..  I realized that if not checked immediately it would soon become a debilitating depression.  

It was time to shift my focus.  That last Christmas cookie didn't only represent the end of a year and a wonderful, fun-filled season but the promise of more to follow. I would be baking more cookies before I knew it.  There would be more parties, more gatherings, more fun.  I thought about the saying, "When one door closes another opens" and felt a growing curiosity.  What might it be?  What did the new year hold for all of us?  I made a promise to myself that I would remember to celebrate the minutes and hours of the day, enjoying the moments and not miss a thing.  Even as I was thinking this, I noticed my mother walking over to the counter for the third time in ten minutes.  She had forgotten she had already eaten her lunch and now she was sitting down looking for something edible.  She picked up an unlit holiday candle encased in a decorative glass.  It had been left within her reach and now she tilted it to her lips trying  to drink the contents.  When nothing came out she took her fingers and poked at it aggressively.  I watched in amazement.  I almost corrected her but thought that I would let it play itself out.  She tried again and again to taste the contents of the glass.  Finally, I called to her.  "It's a candle,  Mom.  You don't drink it."

"I know," she answered a little indignantly. 

 I could be angry and frustrated by this or I could find the beauty of the moment because it became something memorable...perversely funny.  Perhaps because I didn't want to cry, I managed to find the humor.  I made the choice.  I couldn't help myself.  Her indignant expression made me laugh. I took the candle from her and placed it back on the counter.  There was no question; she would try it again.  There was so much to fret about...or to cherish and remember.  Just like a Christmas cookie, I would consume it and enjoy it.  It was a fleeting moment but just like the myriad little things that occurred day after day,  I would dutifully record this and hold it as a part of my Christmas memories.