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.

Franticly Finding Fulfillment

You haven't heard from me in a while. It isn't because I haven't been writing but I have taken a break from writing about my mother and her progressing Alzheimer's.  I had to stop focusing on it and find time to explore other things, to find my happiness and joy.  There is so much to do, so much to experience.  I wake up each morning and dispense with my care giving duties as quickly as possible.  My brain is abuzz with all of the possibilities of the day.  I want to bake something for tea time.  I think about what I will invent...what sweet treat will bring a smile to my mother's face.  This excites me but then I also want to get my other 'have-tos' out of the way so I can write.  I NEED to write.  I breathe to write.  This is my passion, my love, my delight, my fulfillment.  But...   

I try to write about something else.  Yes!  I finish a dark thriller and am pleased with the result considering how distracted I am.  I write something quick and humorous.  It's alright, not brilliant.  I share deep thoughts that seem sad and unfocused.  I look deep within my psyche and explore my motivations.  They ARE sad and unfocused!  Oh!  It's excusable of course.  Just look at our world! What a mess.  The news is filled with ugliness.  People are in crisis, wars continue, stress and worry is rampant.  There are riots, murders, disasters.  I am being dragged into the darkness and sinking into its angry depths.

I try to claw my way out but there are a hundred interruptions.  I am never far from my mother's side.  I do not let the housework and business affairs deter me from my course.  The time is precious.  Each minute must not be wasted.  I am working, busy, frenzied with one eye on every motion, every expression on my mother's face.  Without realizing it the day is half over and I have only managed to write a few sentences while the sweet treat remains as notes on a scrap of paper by my mixer.  I am playing a game of Beat the Clock knowing full-well that my goals are unrealistic.  By the time the lunch dishes are washed and put away it strikes me that I am too tired to bake something.  I take a break intended to last just a few minutes but becomes an hour of listless time-wasting.  I watch a travel log with my mother and know that I will never get done.  

Lost hours, days, months.  Oh how precious time can be!

I shrug and engage in inner dialogue.  These days are the days to devote to other things, to moments that create memories.  Okay then.  How to do that and maintain some balance, some joy, some personal fulfillment?  I make a mental list: take 15 minutes of quality time with Mom.  Write down 5 happy thoughts...life affirming thoughts.  Do something productive that I have put off, like cleaning out a disorganized drawer, sewing on a few buttons,  straightening a closet.  Call or write a friend to maintain that human connection with the outside world.  Finish my day with at least a half hour of quality time with my husband: thank him for being supportive, kind, patient, helpful, steady, loving, and present.  

I feel a calm overtake me.  The brain slows and contentment begins to spread.  I am becoming centered and focused.  I realize that life without a plan is unsettling.  I begin the new day with a smile, a purpose and joy.

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.

Circles

Circles

She holds the crystal ball within her withering hands.

What do you see,  I ask.

She gazes intensely and then shakes her head slowly.

I see nothing, she replies.

I understand.

Her age...her dementia...only sees the past

And refuses to look to the future.

There is none. 

Her mind does not think beyond the moment.

Yet, I wonder, do any of us see what has been laid out for us?

Look deeper, I encourage.

I hope, I dream, I wish that she could look to the future.

Could she, would she look forward to a time of transition?

Might she think about those who await her in her afterlife?

Does she still believe?

Carefully I remove the orb and place it in its golden sparkling stand.

It glows magically and I imagine that I can see what my mother can no longer visualize.

There he is...my father. 

He is smiling and beckoning lovingly.

There are my grandparents all with arms outstretched.

Siblings long departed wave and surround her.

They call to her, my mother, who walks upright with a spring in her step.

She is no longer silent, unsmiling, confused.

She has found the memories she had forgotten.

Suddenly she sees and knows -- from birth to death,

Her life has been so full.  She remembers it all.

The childhood filled with love.

The friends, the activities, the struggles of the great depression.

The soul mate who met her so young, so innocent, so ready to give her heart away.

A life well-lived through wars, hardship, births, deaths, joys and sorrows.

Achievements and honors, pride and laughter; these are the things she remembers.

A full circle, contained within an orb.

An embodiment of a life, full to brimming.