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.

Poop-pocalypse

The other day our son was afflicted by the stomach flu.  It didn't last long, but it was very contagious.  Mom came down with it the very next day.  Before I continue, I would like to say that I am going to be...um...a little indelicate as I describe my experience. So, to the reader; if you have a weak stomach do not read further.

Now, I have seen my share of stomach flues.  I have cared for children with days and days of diarrhea. I have cleaned up vomit, poo, and horrible messes.  But...having a mother with Alzheimer's come down with stomach flu is like being in diarrhea Hell.  It is flu of epic proportions!!!  The thing about Alzheimer's is this: There is very little awareness of what is happening one moment and the next, old habits kick in.  With Mom that meant that when she discovered a mess in her panties, she tried to correct the problem.  She attempted to clean up using the sink to dispose of the mess.  She doesn't see well and so the mess spread to the walls, knobs, doors, and cabinets.  It was on sheets, towels, all her clothing and the floor.  Then she stepped in it and got it on her shoes, her socks and the furniture.  (I am gagging as I describe this).  It began first thing in the morning as I walked into her bedroom.  I knew immediately as I entered that something was amiss.  My olfactory senses alerted me before I had taken a step through the threshold.  Armed with room deodorizer I rounded the bend to greet Mom asking if she had gone to the bathroom. "Oh yes," she replied. That was the understatement of the century.  When I observed the mess I immediately sprang into action, mopping, cleaning, sanitizing and spraying deodorizer.  Then I cleaned up my mother.  All delicacy was thrown out the window. as I unceremoniously mopped and sponged Mom down like a sailor swabbing the deck!  Ha!  The poop deck!!!!  Even in my gagging misery this made me laugh just a little.

As the day wore on, the feculent emergencies continued.  The laundry room was like a bivouac center for emergency operations.  Soap, bleach, and hot water were used generously. Our washer and dryer  suffered from continued use as I ran load after load of soiled clothing, sheets and towels.  Mom was upset and confused as I reacted with a dramatic urgency.  I barked orders like, "Move here.  Wash your hands.  Step out of your shoes...no...your shoes!  YOUR SHOES!  ARGH!"  Then she would sit down because she felt woozy and weak.  "NOOOOO!  Don't sit down!"  It was too late.  She left a smudge on the cream colored upholstered chair.  More cleaning and sterilizing.  More mess.  More orders and instructions.

Needless to say as the hour approached for me to go to an evening meeting I couldn't be happier to escape the excremental nightmare.  My poor husband bid  a panicked goodbye as he took over Mom duties.  I had hoped that he could get her off to bed before I returned home, but as luck would have it the meeting was over early.  I was home with time to spare and as I walked through the door, Skip was standing in the hallway outside the bathroom calling to me.
"Mom stood up and said she had an emergency," he reported.
My heart sank.  As she emerged she said she was ready to go to her room.  I asked how she was feeling and she said "Fine!"  (Why did I believe her?)
Off we went to her room and as I helped her out of her clothes I didn't think to check on the condition of her garments.  She said she was fine, didn't she? As she sat on her bed it occurred to me that she might not be aware of how she was and asked her to stand up.  Sure enough she had soiled the sheets with the residual excretions.  I couldn't have been more disgusted!  Before I could put Mom to bed I had to change her sheets yet again, change her nightgown, her rapidly dwindling supply of panties, and provide her with another sponge bath.  An hour later I came downstairs and collapsed.  I recounted the uglier parts of the day to Skip who provided an ample amount of sympathy.  I was exhausted.  I went to bed bone tired.  I slept soundly all night in spite of the fact that I noticed a few little rumbling pains in my abdomen.  The next morning I awoke with a definite gas cramp followed by more liquid rumblings.  I knew immediately that I was afflicted with the dreaded diarrhea that had obviously been shared by its generous predecessors.

During the day, I visited the bathroom with explosive frequency.  I finally retreated to bed to stay close to the bathroom and away from contamination of the sanitized kitchen and family room. When Skip had to run an errand he asked me if I would be alright. I lifted my head off the pillow to  heroically announce that I would be fine.  I heard Skip tell Mom that I was in the bedroom and if she needed me, she could call and I would come.  Within seconds of our back door closing, Mom was up and walking into the bedroom.  She peeked in my room.  I lifted my head and asked, "Do you need something?"
Mom looked at me and knit her brows together.  "No," she answered.  I don't need anything.  I came to ask if you needed anything."
"No," I answered.  "I'll be okay."
"Well you just call me if you need something."  Then she added, "I'm just in the other room.  I'll come running."
"I will, Mom.  Thank you."  I smiled broadly.  I couldn't believe it!  This woman who barely knew who I was, where she was, what she was doing, how to do things, how to follow instructions, how to form sentences, was now offering assistance.  Ever the mother, ever the nurturer, her will to help was bigger than her disease.  Her sweetness, her care, her basic nature was in tact.  It was telling that motherhood ran deep and transcended all else. This was a moment I would always remember. If it was my very last positive memory it would be sufficient and beyond satisfactory.  Forever I would be grateful to my lovely and wonderful mother for such a selfless offer.  I couldn't help but look at my own attitude and feel like I needed to adjust my thinking.  I refused to feel guilty for my efficiency and less than loving attitude when dealing with everything but told myself that a more gentle nature was in order and immediately resolved I would try harder next time. We had survived the dreadful ordeal and while it had felt like we were both at death's door there would, in fact be another tomorrow and a chance for me to do better.

Grandma Stole My Wallet!

"Where's my wallet?"  Our son stood in the doorway looking confused and frustrated.
"I have no idea.  Why would I know where your wallet is?" I asked defensively.
"Check Grandma's walker," he answered.  "She probably took it."
ARGH! My son was accusing his grandma of stealing his wallet! I began to object but then remembered how she had 'lifted' his mail, his keys, and other objects she had found sitting on the table in the entry to his apartment.  I walked into the family room and lifted the walker seat to access the storage pocket.  With trepidation I reached in knowing full well that there would be assorted tissues and napkins that were both clean and used.  Tentatively, I fingered the top tissues feeling for something more substantive.  I dug deeper and my fingers touched something solid, something long, hard, and unrecognizable.  It wasn't a wallet.  It wasn't keys.  It was cold...metallic...a utensil.  I pulled it from the dark pocket to examine it more closely.  It was an ornate silver spoon.  I examined it with curiosity.  It was not a spoon I readily recognized and yet it was curiously familiar.  Where had I seen that before?  I turned to my mother and inquired, "Where did you get this?"  (What a foolish thing to ask since my mother's Alzheimer's disease severely limited her memory of ever having seen the object in question.)
"I don't know," she replied.  "I've never seen that before."
"Well you took it from somewhere!" I argued.
"No!  Someone else must've taken it and put it in my walker."
Exasperated, I removed the spoon and placed it on the counter telling myself that I would ask my husband, Skip about it later.  When I saw him I showed him the spoon and asked if he recognized it.
"Nope.  Maybe someone who brought something to our house over the holidays had a spoon with them and forgot to take it home."  This was a logical conclusion since we often found trays, plates and serving utensils that assorted guests left behind.  (Let me digress for a moment as I explain that we have had to limit much of our socializing to at-home events because of the need to care for and supervise Mom.  We invite people to our home because to visit elsewhere is difficult and often impossible the last minute.  We must arrange for and pay for a sitter to be with my mother, to prepare her meal, and assist her to undress and get ready for bed.  If we are gone for several hours, the cost begins to escalate and I find that we often have to cut our visit short.)

I puzzled over whose spoon it might be, where and when Mom had found it, and how she had managed to put it in her walker without us being aware that it was missing.  Suddenly it struck me where I had seen this silver pattern.  I picked up the phone and called our daughter.  "Did you lose a spoon?" I asked.
Dorie sounded confused as she answered, "I...uh...I don't know.  Why?"
Because I think that we may have it.  After explaining what I had found, I turned the spoon over and read the engraving on the back.  Yes, it was our daughter's silver pattern!  Now the question was how it had ended up in Mom's walker.  In the spirit of true detectives, Skip and I reconstructed the events at the 'scene of the crime.'  We had ventured out with Mom to go to Christmas dinner at our daughter and son-in-law's home a couple of weeks prior to my discovery of the pilfered object.  Mom sat at the dinner table fingering the napkin ring at her place.  It was beaded and appeared to be a bangle bracelet.  She was entranced with the texture, the visual appeal, the crush, movement and rotation of the beads woven into the round shape.  Skip was seated next to Mom at the table and when he got up to take a second helping of a delicious dinner, Mom reached over and grabbed Skip's napkin ring.  When he noticed that she had his napkin as well we laughed and joked about it. Skip teased her that she was a kleptomaniac.  Little did we know that Mom had also taken a spoon off of the table when we weren't looking.

I wonder what other things we might find if we do a thorough search of her drawers, her pockets, and of course the black hole of her walker seat where I fear to explore.  Haven't I found pilfered pens, mail
, money, laundry, towels, cups, photos, cards, glasses and other assorted items belonging to us in Mom's possession?  Hasn't she squirreled away things left on counters, on tables, anything within her sight and/or reach?  Hadn't I noticed that some of her panties that she was wearing looked exactly the same as my own undergarments until I realized that I hadn't seen my panties recently?  Yes, that is what my mother had become: a thief!  My son was not so far off with his accusation after all.  It hadn't happened yet, but I knew with a growing certainty that if left out for her to find, my mother would most definitely be the culprit if Bill's wallet went missing.  I imagined the moment to come when I might hear, "Grandma stole my wallet."
'Sticky fingers' are just one more side effect of dementia.  I will definitely have to 'frisk' Mom before I put her to bed tonight.

The Last Christmas Cookie

The Last Christmas Cookie

a

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.