Never

NEVER

I used to think of it from time to time when I was young...

What if.  What if my mother and father died? What if I was all alone?

But those thoughts were cast adrift to the murky waters where I did not set sail.

"Don't worry," my parents told me.  "We won't die."

"Never!" I beseeched.

They wrapped their arms around me and I felt reassured...safe.

The parental lie we tell our children:  innocent, well-meaning.

When it happens, when we catch them in that lie we forget that they told us. 

We forgive them this untruth because we know that there was no other way...not then.

But now.  Just now, I remember.  You promised! 

You said, "We won't die!"

Now what? I feel the glimmer of the small betrayal.

My inner child remembers.

But...I reconcile and move on.

I am an adult.  I am independent, self-sufficient, secure.

My children asked.

My grandchildren ask now.

"Don't worry," I say.  "I will never leave you."

It is not a lie.  I will surround them with memories of me.  

I will give them love that will always remain.

In a hundred ways I will always be with them.

Their thoughts, their actions, their mannerisms,

Their very biology!

I realize how strong an imprint we make,

Even when we don't know it.

I look around and remember.

Here is a photo.  There is a gift.

I smile and see my father's expression in my face.

I blink and see a glimmer of my mother's eyes.
A favorite food, a flower, a painting.

My mother...my father. Everywhere.

And then I know that my parents told the truth.

Sharing Caring

I really don't know where to begin.  This is so horrible and yet, weirdly funny.  I have told similar stories before that were equally, ehem...'difficult' but this one...oh this is so much more!

I began my morning checking my email while it was still quiet.  Mom was still asleep and that allowed me some precious minutes of undisturbed personal time.  My laptop remains permanently on the coffee table next to my mother's chair.  I realize that bending to type is a bad position for one's back and have suffered back strains when working that way; but with my caregiving duties I find that it is really the only way I can work and still keep an eye on Mom.

As I bent to answer an email I noticed that my back became tight and I rectified this by sitting back on the sofa and placing my laptop on my lap to finish typing.  With hips thrust unnaturally forward and tilted, my body staged a revolt. I didn't realize this until I heard Mom walking about upstairs and rose from the sofa whereupon my back locked stubbornly refusing to move or allow my legs to propel me forward.  I howled in pain sending Skip running to see what was wrong.

"I can't move," I told him as he helped me maneuver myself back to the sofa.
"What can I do?" Skip asked with concern.
"I dunno...just...um...get me a pillow."
Skip grabbed two pillows and pushed them behind me.  "Can you lift your legs?  Can you twist? Can you bend?" he asked trying to assess my injuries.
I answered with moans and groans.
Meanwhile Mom continued to pace upstairs growing impatient that no one was coming to get her. This was the moment we had dreaded -- the reason that I never left home overnight because I didn't want Skip to have to help Mom get into her clothes.  I wanted to spare him the sight that could never be forgotten. A naked 98 year old is not something one normally sees and frankly, it's just not the way I wanted my husband to remember my mother. But...As the saying goes; desperate times call for desperate measures; and Skip looked pretty desperate when he walked towards the door saying that he would take care of dressing Mom for the day.  I listened on the monitor as Skip greeted my mother.  Then I heard him explaining what was going to happen.
"Here are your clothes.  First put on your undergarments and then your sweater and pants.  I'll wait at the door and when you are ready, just call to me and I will help you with your shoes and socks."
For most people that would be sufficient, but with my mother the instructions might as well have been in Latin!  After a sufficient amount of time, Skip walked back into the room and I heard him exclaim in an agitated voice, "No Mom!  You need to put your bra on...no wait...NO!  NOOOOOO!!!  It was too late.  I knew exactly what had happened.  Mom couldn't dress herself anymore. She had whipped her nightgown off so that Skip could assist her.  Later, when Skip came downstairs looking like he had just smelled something terribly disagreeable I asked if what I thought he saw he had actually seen.  "Oh yes!" he told me with utmost displeasure.  His eyes rolled so many times I thought for sure they would get stuck in a permanent 'up' position.

The day progressed without any change in my condition and that night Skip helped Mom back into her nightgown and to bed.  I had hopes that I would feel better the next day or the next, but alas, the condition remained the same and Skip grew used to assisting with dressing Mom.  I felt awful about it but Mom was oblivious.  Then yesterday when we thought it couldn't get any worse, the perfect storm struck.

I was feeling a little better and decided that I could make lunch for the three of us if I stood in one position, no bending, allowing Skip to fetch ingredients and dishes. 
"Can you get Mom something to drink?" I asked as I flipped the omelet.
Skip must have thought that an omelet meant it was more like breakfast and poured my mother a glass of orange juice.  I didn't notice this however, until she had finished almost half of it.  I reminded Skip that orange juice usually caused my mother huge digestive distress.  Skip argued that it would be fine and ignored my protests.

I felt the familiar tightness in my back and realized that I needed to return to my lying-flat position on the sofa. Skip assured me that he had everything under control.  When Mom finished lunch Skip washed some grapes and gave some to Mom.  Mom, being oblivious to how much she had eaten or how she felt, readily downed the grapes and sat down to watch some TV while I (upon discovering what she had eaten) told Skip that she was going to be sick.  No sooner did I make this proclamation than my mother gave a gulping cough and got up quickly.  "Hurry!" I yelled.  "Skip!  Mom's going to throw up!"  Skip rounded the corner waiving his arms and rushing behind her as she slammed the door to the bathroom.  We heard the loud heaves from the other side of the door.
"Not in the sink!" Skip reminded her but knew already that it was exactly what she was doing.  Mom had forgotten where to throw up and it wouldn't be the first time we would gaze at a sink full of vomit. (This is the nasty part but I just have to go into the dreadful details.)  I could hear Skip almost gagging as he told Mom to go wait outside.  He was cursing quietly as he recounted to me what had happened.

"I told you," I reminded him.  I didn't like being right this time.  It was just too awful and I felt so sorry for Skip who was the one who had to clean up the sink.  There was no washing down a full lunch that had not even been digested.  Skip left to get a scooping bucket, some Lysol and latex gloves.  Before he could begin his disgusting task, Mom was already headed back to the bathroom looking panicked.

"Wait, wait," he yelled hastily rushing her to the toilet.  It was only the last minute that he noticed that the toilet was not flushed and when he went to flush it, it began to overflow.  "Hold on!  Wait...here's a bucket.  Use this." He practically threw the bucket at my mother as he lifted the back of the toilet lid to stop the flow of water.

"What's going on in there?" I called.  When Skip told me of the emergency I tried to get up off the sofa but quickly discovered that my back had locked up again.  I began flopping around like a dying mackerel while Skip ran back and forth from the bathroom to the garage and back with mop, bucket, and paper towels.There was more retching and then came Mom's announcement, "I have to go to the bathroom.  I'm gonna be sick".

Skip managed to get the toilet flushing in the nick of time and ran out of the bathroom to await the outcome.  He didn't wait long (and frankly would have gladly waited longer -- like for the rest of his life).  Mom had managed to make a mess of things (I won't elaborate). Skip could be heard saying, "Don't move.  Where are your panties?  Oh no!  Um...just wait.  I need to get you some clean clothes."  Then he ran out of the bathroom to the laundry room where a clean load of Mom's clothes awaited folding.  I saw him flash past me to the bathroom and heard him instructing Mom what to do.  Take off your shoes and socks.  No, your shoes...your SHOES.  No those are not your shoes.  UGH.  Okay.  That's okay.  Your socks need changing too.  No...keep your pants on until I leave.  NO...NOOOO.  Oh well.  Okay then.  Here.  Take these."  About 5 minutes later Mom emerged in a whole new outfit.  There was much clanging and banging in the bathroom; then the door opened and Skip handed Mom the bucket.  "If you need to throw up use this bucket."  Mom gratefully took the bucket and retched loudly.  "What can I give her?" He asked me.

I was tempted to reply 'No orange juice,' but helpfully told him where some anti-diarrheal medicine was.  Mom swallowed the medicine with a chaser of water and promptly threw it up in the bucket.  The whole 'event' lasted for about an hour. She was miserable, Skip was miserable and I was miserable. When Mom began to feel better, as is the way with Alzheimer's, she soon forgot the entire episode.  Skip, however, was still cleaning up. When at last Skip emerged from the bathroom after another hour, having cleaned and polished everything, I hugged him tightly.  Feeling around his shoulder blades I asked, "Does your back itch?"
"What?"
"Does your back itch where your angel wings are growing in?"  We both laughed.  Yes, my wonderful husband had done what most people would never do.  At that moment I realized that our wedding vows that we recited 49 years ago were being strongly tested -- that 'Through sickness and in health' part.  I doubt that either of us thought about a package deal that included in-laws as well.  Both of us promised to share our lives with each other (and evidently with others too).  Skip demonstrates his love and devotion to me every day, but this...THIS is the ultimate affirmation of both sharing and caring.  How amazing this man is!  I am so grateful to him for getting us through the day.

As I write about this my emotions are mixed.  The most unpleasant things provide us with positive insights, and lessons learned. I am also reminded that I find humor in the strangest things for as I recount this I begin to laugh out loud. The image of Skip almost airborne flying from garage to bathroom while I could do nothing more than observe and yell instructions is worthy of a sitcom. The bonus is to find the gratitude, and the gifts these experiences bring.  Skip is my gift (and my mother's as well.)  He dug deep and did what he needed to do.  For me, I found compassion for both my mother who was suffering and for Skip who was also suffering.  The greatest gift is to know that we are all three sharing the journey.  It is the caring that bonds us and binds us to each other.  I do not want to minimize this for as we continue on we see this every day and in every way. 

Dom P, Ancestry, and Me

They were gathered in the kitchen, each with a special task.  I was told to sit outside on our porch and await my birthday surprise.  Yes, this was my birthday weekend.  I was so happy to have the family here even though I was stressed and tired.  Caring for my mother had worn me out. More than anything, I just wanted to sleep undisturbed and unfettered by my caregiving duties.  While I waited, entertained by my two delightful granddaughters, Mom wandered in and out, banging her walker against the door jam and table.  She was hungry.  Dinner was taking too long to prepare.  My son mixed a cocktail for me...the best Long Island Iced Tea ever!  Mom eyed my drink jealously.  "Oh no," I thought.  "You mustn't have this."  I sneaked inside avoiding the bustle of activity as plates and forks clanked on the counter, buzzers sounded, pots bubbled, and meats sizzled.  My daughter and son-in-law were busy elves preparing a feast of flavors in the kitchen.  I found some rum and Coke and mixed a drink for Mom, careful to go heavy on the Coke and light on the rum.  My son and his girlfriend were encouraging me to add more rum but I didn't think it wise to get someone with Alzheimer's tipsy. I laughed to myself devilishly thinking "What difference would it make?"
"This is delicious," she announced as she gripped the glass in both hands and downed the drink with a rare gusto.  Knowing how difficult it was to keep Mom hydrated, I mused that this was obviously the way to get her to drink more fluids.  Wait...she was drinking on an empty stomach!  The Responsible Me kicked in; "Have some chips," I suggested, hoping that they would absorb the alcohol.

When at last the meal was ready, my daughter appeared at the door smiling broadly.  She and the rest of the family had pulled it off.  They had brought a birthday to me since Skip and I couldn't do much in the way of celebrating my birthday elsewhere; not with my mother's condition.  I had said it.  I told them that we couldn't leave Mom alone now.  No...not now.  She was too confused, too easily agitated. Surprisingly, she proved me wrong.  She was in fine form.  She remembered who we were, little facts about the family, and even managed some quick repartee.  Was it the rum?  Maybe it was helping.

We dined on wonderful food as we crowded around the table in merriment and celebration.  Then came the birthday toast.  A bottle of Dom Perignon (provided by my son-in-law and daughter) was brought to the table.  Okay, I've got to admit that this was really special.  I waited with growing excitement as they popped the cork and handed it to Skip to pour. I watched the bubbles (the tiniest ones) floating to the top of the liquid and remembered that the finer the Champagne the tinier the bubbles.  "Savor this," I reminded myself. Skip lifted his glass to wish me a happy birthday in a clever and loving toast.  We all sipped from the fine Champagne.  I took a small taste feeling the sparkling liquid gold tickle my throat and tried to decide if it lived up to its reputation. Yes, I decided.  It definitely did!  It wasn't so much the flavor but the aftertaste.  There was a certain smoothness, an elegance of flavor, a quiet assertion that fine grapes and warm sun had joined together to make an intoxicating refreshment that was to be relished. 
Even Mom was given a small glass."This is strong!" she remarked.  "It's gone right down to my garters," she quipped and then beamed as we all laughed boisterously at her joke. It was a rare moment to cherish -- a 98 year old still able to engage in the merriment.

Cake, Champagne, flowers, and then presents filled the night.  My daughter announced that we would be attending the ballet. Our son and his girlfriend gave me a kit to check my ancestry with a quick saliva test -- something that was non-existent when I was born. (My how times have changed!)  I was thrilled with the prospect of finding out about my ancestry even though I was already certain that I was a confusion of myriad countries and races.  

The party had moved outside to the fire pit.  The granddaughters had been promised this traditional end to our cooler evenings but slowly they began to hang their heads sleepily. With Mom tucked in for the night, I returned to the dwindling numbers around the fire.  I was determined to party into the wee hours but I too became drowsy.  I struggled to make these fading moments last for just a little while longer. The light-hearted chatter almost masked the depth of emotion I felt.  I looked at their faces...each of them so special, so dear.  I listened to their voices; I watched the firelight  reflected in their eyes, and wanted to capture each smiling face in a memory.  This night, this celebration, this shared love; how special and yet how fleeting it felt to me.  I wanted to hug each of them to my heart and cling fiercely.  I suppose when one reaches a certain age sentimentality dominates all family gatherings.  Our numbers are not so large, and we are separated by miles but it is always the same.  We gather for occasions and enjoy.  We laugh, we talk, we share, we support one another.  This enduring bond of love is ever-so-important to me now more than ever.  I am so deeply embroiled in caregiving and finding that stress has become a way of life; and yet I know that my family will rally round and help when help is needed.  It is the best birthday gift of all! 

When the last dish was dried, the last glass placed back in the cabinet, the last surface freed of crumbs and spills, all without my assistance, I thanked everyone and went to bed.  I thought that I would go right to sleep but instead I reviewed the day, the comments, the moments.  Was it possible that my heart was actually glowing?  It certainly felt that way.  Then I remembered the Ancestry Kit.  What would it reveal?  I already knew that it would report in a clinical fashion and would satisfy the question of familial backgrounds but it would not tell me what my ancestors thought.  It would not show how they felt about each other, what emotions were when they gathered together, how they laughed and cried together.  The births, the illnesses, the inevitable passings of one generation after another; this would be understood but not explained; yet here I was, the embodiment of all of this history, all this love.  Now, on my birthday I reviewed this and smiled with a deep satisfaction. They slept -- the whole family...the eldest to the youngest, oblivious to my overwhelming gratitude and affection.

Hallucinations

I have witnessed my mother's hallucinations over a period of time but they are increasing to the point of being alarming, sad, disconcerting and yet, absolutely hilarious.  Last night at around 1 AM she shouted out several "Hellos".  I ran into her room to see what was going on.  Evidently she was hosting a party in her room but when I walked in she wasn't clear who was in attendance.  A few days ago she began talking to someone who supposedly gave her something to taste.  She was chewing on the imaginary tidbit saying, "Mmm.  It's so sweet!"  Today she walked into the kitchen and began talking to someone who wasn't there but refused to tell me who it was.  (Does she have a secret pal?)

This evening, Mom walked to the back door, opened it and shouted out to the empty screened porch.  "There's a light on in the kitchen and no one is in there.  Someone should turn it off."  Then she stood at the door for a moment and repeated her message.  At this point I decided to ask her who she was talking to.
"Those people out there," she replied.
"What people?" I asked.
"Them," she told me pointing at an empty porch.  "That whole gang out there."
"Okay," I said.  "So you see a whole gang of people?"
"Yes, she insisted.
Now, to be clear, I lecture others about how we shouldn't correct those with dementia.  We should enter their world instead of trying to pull them into our world. Normally I do that too.  It is crazy and totally counter-intuitive for me.  My responsible and logical self wants to point out the errors in my mother's thinking and perception but  I overcome my strong desire to be the one in control and play along...usually.  Today, was not that day.  It was the end of the day.  I had spent the entire day dealing with stressful things.  My brother was in the hospital; a brother who also has Alzheimer's and who is living out of state without a family member to help with medical decisions.  I was also dealing with a few caregiver issues that arose from a couple of the caregiver support groups. I was trying to help or find help.  In addition, my Mother-in-law on the other side of the country was injured and in acute pain. Both my husband and I were in contact with his sister, his mother and trying to assist long distance.  I will avoid listing all of the other things that were of concern other than the approaching hurricane that was threatening our area and for which we were preparing just in case it changed course and blew this way.

So, to get back to Mom's hallucination; well, I guess I was not feeling mentally equipped to handle it as well as I should have.  Instead of telling her to invite everyone inside I asked her what the people to whom she spoke looked like.  She peered intently.  Then, shaking her head she replied that she couldn't describe them.  "There are too many people out there.  They just look like a group of people."
"Yes, but can you describe them?  Are they men? Are they women?  What color is their hair?"
"Oh, you know," she answered.  "I can't tell you everything."
"Well show me one person," I insisted.
She walked out and pointed to an empty chair.  "There," she told me.  "Right there.  See?  That woman right there."
"What color is that woman's hair?"
"Green."
I looked at the empty green chair.  "Touch her," I commanded. Mom obediently touched the chair.  "So are you touching a person?" I continued.
"Yes.  Of course I am."
"Grab her hand and hold it."
"I can't," she replied.  "She just got up."
Still I couldn't let it go.  "Show me someone else," I pushed on.
"There," she pointed.  "That man over there."
I shook my head and said, "Okay.  Well let's go inside now."  I resigned myself to the fact that Mom was not going to admit that there was no one there.   

It had been that kind of day.  Mom had begun the day angry because she was sitting and waiting for someone to come get her and without calling out to us, I simply went up to help her at the usual waking time.  I found her standing in the middle of her room, naked and trying to wrap herself in a blanket.  She was tripping over it and had it stuck under the wheels of her walker.  I asked her what she was doing and why she had taken her nightgown off.  She replied that she wanted to put her clothes on but someone had to help her and she was waiting for them to come.  I reminded her that I was that 'someone.' Getting her dressed was an ordeal because she couldn't perform even the most simple tasks and I had to assist with every single thing.  (It was a new low.)

All day long, Mom walked around and around aimlessly.  When I tried engaging her in conversation her aphasia wouldn't allow for discernible conversation or answers. But this...this massive hallucination was more than I could bare.  I felt myself shaking inside.  My stomach was knotted. I tried to calm myself, to count to ten, to do some deep breathing but Mom was pacing again and finally I asked her what she was doing.  She couldn't answer.  When she sat down in the place that I usually sit, I asked her why she was sitting there and she gave a muddled response that was unintelligible.  She glared at me when I tried to provide some assistance.  Something was bothering her but she couldn't express herself.  There were two more incidents that required answers she couldn't provide.  Once more she was on the move and I asked where she was going.  She grew angry and petulant.
"I'm going to bed!" she scowled angrily.
"You can't.  It's not time."
"Well I want to," she yelled at me.  (I had pushed her over the edge.)
"Why?"
"Because I am tired of you asking me questions!"  (Hmmm...even though she had dementia and aphasia she managed to express how angry she was.  Yup!  I got the message loud and clear.)
Now it was my turn.  I'm not proud of these moments, but I lost my temper.  I told her, "Okay, go to bed...because I don't want to see your snarky expression anymore."  I stormed over to the door to open it to her room. I took her upstairs. I decided that I would get one more 'dig' in.  "Can I help you with your nightgown or is that a question you don't want to answer either?"  Suddenly I was the injured child.  My mother became the mature one. with a kind tone she replied, "I didn't mean that you couldn't ask me questions...I wasn't really mad at you. I'm just mad at the situation," she told me with a lucidity that I hadn't heard in over two years.  I was amazed.  It was like a slap in the face.  It calmed me right down and now I was apologizing to her.  I explained myself telling her that I loved her and as her daughter who cared for her I sometimes might push a little too hard.  I felt terrible.  Reminding myself that I shouldn't lose my temper, that I was dealing with someone who couldn't help herself, I had to allow for my mother's temper just as I might do with a small child who found that the only means of expressing frustration was through an emotional outburst.  I told Mom that it was okay for her to get angry once in a while.  "Neither of us is perfect," I reminded her with a smile and a wink.
Mom smiled back and nodded.  "I'm sorry," she told me with eyes filling with tears.  "Sometimes when when you ask me questions I get confused.  It's upsetting."
"I know," I told her consolingly.
My heart was full. I was so very sorry I had been angry.  How could I have lost my temper?  I berated myself.  My eyes also filled with tears as I gave her a hug.  "I love you Mom."  I turned and walked away before she could see me crying.  I stood at the door and shed my guilty tears but then slowly remembered my own words I had just spoken to her.  "Neither of us is perfect."  I could forgive myself for my lapse.  It was alright.  I walked back to her bed, straightened the covers and pulled the sheet up under her chin.  "Goodnight.  Sweet dreams," I told her softly.  She was already rolling over to fall asleep smiling sweetly.
"Thank you," she mumbled back in a sleepy voice.
I turned off the light and walked away grateful that the day ended on a good note.  There was no real resolution. However, there was solace in knowing that beneath the high emotion there was still a profound love.  The love that we shared was sometimes battered, sometimes abused, and even sometimes ignored, but still there, still in tact.

It is a strong reminder that the memories might be gone, the mind might be failing, but as long as there is a breath to breathe my mother will always know deep down inside that she is loved.  Love speaks to the part of her protected by some unseen force.  Her being...her soul will always be the part of her that time and the ravages of Alzheimer's will never touch.  That is what I speak to...it's what I will fiercely protect, treasure, and address when my words have lost all meaning, when her awareness is gone, and when her thoughts have dried up.  When her own words fail and the smile fades, she will still know I love her.

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.

Thanksgiving

We sit at the table with glasses raised in a toast.  Who will begin?  How will we express the things we are thinking?  

"Here's to our health and happiness," we say.

No. This is wrong.  I look at Mom.  She has begun to eat, paying no attention to the toast or to the fact that we are not eating yet.  She is oblivious to the purpose of the gathering of family. 

"Mom," we remind her.  "It's Thanksgiving.  Lift your glass." 

She smiles and obliges us with the lifting of the glass as she joins in.  Then we go around the table and tell what we are thankful for.  When it is Mom's turn she announces that she is thankful for being here with all of us -- a wonderful moment of cognitive thought and awareness!  

Skip sits next to my mother and helps her cut up her food.  I look over and give a silent thanks for him and his help, his patience, his willingness to assist.  Lately there is so much more work, more angst, more frustration, impatience, and disappointment.  We are both tired and stressed.  So, here we sit on Thanksgiving looking for reasons to be thankful.   Are we happy and thankful that Mom has Alzheimer's?  Of course not! Are we thankful that our lives are topsy turvy and that our personal freedoms are sacrificed:  to come and go, to spend time with others on a whim and at a moment's notice, to go out to a movie as we please?  Are we appreciative that our home has become littered with dropped tissues, with safety assists, with reminder notes, signs on doors, locked doors, removed hazards that might cause unsafe conditions for Mom, with locks removed from bathroom doors, with chips and dings in paint and wood due to Mom's walker banging around the house? Are we thrilled with the extra work, laundry, dishes, and errands for those things that Mom needs? Do we like watching non-stop TV to entertain Mom...TV shows that cater to her taste?  Is it enjoyable being on constant alert to Mom's needs, to any dangers, to potential falls, choking, wanderings?  My answer is not immediately apparent.

I question our decision, our purpose.  I consider the changes and the 'inconvenience.'  There are others who make the choice to NOT be inconvenienced.  Yes.  It is tempting.  But then I think about the value of having Mom with us.  She is a part of our lives.  Regardless of the things that are unpleasant, there is so much value to having her with us.  She is a connection to our past.  She is yesterday's memories. She is a reminder of our origins, the reason I am alive.  She...MY MOTHER...is why I am thankful.  Yes!  In spite of the myriad alterations we have made,  I AM thankful...truly, truly thankful.

As I put Mom to bed after cleaning up the dishes and taking a little break, thinking of the meaning of the day; I wish Mom a Happy Thanksgiving.  It has been a long chaotic day.  I know that she is tired and grumpy.  I am tempted to hurry off as soon as I help her get into her nightgown.  Instead I stroke her hair and rub her shoulders.  I tuck her under her covers and pull the blanket up beneath her chin.  I give her a tired smile but a sincere one.  She looks up at me and smiles back.  

 "Thank you," she says sweetly. I know that she appreciates the care she receives even when she cannot or does not express it.  

"You're welcome."  Again I wish her a Happy Thanksgiving.  She laughs that laugh that tells me she has no idea what I am saying.  She has forgotten the day.  She has forgotten the dinner, the toasts, the company at the table.  But deep down inside I think that she knows.  Rather than a conscious knowledge, she has a 'feeling' of being here, of being loved, of being cared for, of being safe.  This is my Thanksgiving.  She has someone to care for her.  Dear God, I am thankful for this day, this food, this family, this life, this woman who means so much to me.