A Difficult Day

It was such a difficult day.  I found myself becoming more and more upset.  It wasn't that I was feeling sorry for myself.  No!  In fact it was not about me at all . I found myself feeling so sad about what was happening to my mother.  In the past week she had hit a new low.  Unhappily I could see that this was to be the new normal for her.  Alzheimer's Disease progresses and with regularity there are changes that are at once surprising and upending and then predicted, expected, and regarded with acknowledgement that they are signs of what my mother has become...until  they are not...until there is a new change--a new normal.  So today I had to face the fact that more often than not, my mother cannot find the right words to describe, to ask, to identify.  She has no clue as to who I am other than my name.  She describes both of us (my husband Skip and me) as "those nice people".  Since she has lived with us for over a year, I have cared for her and answered her every need, yet she now ascribes the care given to her as being given by others.  She watches me as I prepare her food but moments after being served she cannot tell me who prepared it or who served her.  She no longer knows what she is eating and even if she likes it she cannot tell me what it is. 

So, yes, today was a difficult day and I was sad, so very, very sad.  Then, as I felt heavy with depression, I went into the kitchen to begin dinner preparations.  I stood at the sink and it overcame me.  It washed over me like a heavy blanket of gloom.  I sighed deeply.  I looked for energy to move myself but found that I was bound by invisible handcuffs.  I couldn't lift my arms.  I couldn't move my feet.  My chin dropped to my chest and tears began to flow.  I told myself to be strong, to smile, to shrug it off.  Instead I pushed the sadness deeper inside of me. 

After a minute I successfully buried the sadness and was able to function.  I began my work to provide a healthy meal for Mom.  Shaking my head I ignored the little voice inside of me that said, "What does it matter what you make?  She won't know the difference!"  Yes.  That was true, but I would know.  I promised myself that I would be the person who did the 'right thing' regardless of what she knew or remembered.  So...I moved forward.  I stirred and chopped.  I measured and sliced. 

Just then my dear husband walked in from his errands.  He had picked up the mail from the box at the curb and was carrying assorted envelopes.  Among the myriad sizes and shapes, there was  a box.  Skip smiled broadly and proudly as he handed me the box saying, "Here's a surprise for you!" I put the large utility spoon down on the stove and cleaned my hands. 

"What is it?" I asked with anticipation and (despite my mood) even a little excitement.

"It's a surprise!" Skip repeated not wanting to say more.

I allowed myself a smile as I reached for a scissors.  Opening the package and rummaging through the packing materials I extracted a beautiful and ornately decorated box that boasted the letters V.E.R.S.A.C.E.   The smile grew to a grin as I lifted the container and read the name of the perfume inside. The growing realization was quite surprising:  Skip had paid attention when I had rubbed a sample of the perfume from the advertising enclosure in a magazine a few weeks prior.  He smelled my wrist when I told him I liked that fragrance.  He remembered the name and ordered it online.   He, who ignores dates I tell him, times to be ready for an event, names of people about whom I am talking, movies I want to see,  and messages I deliver; he remembered this!  I was overcome with emotion.  I hugged him and thanked him with such intensity that he searched my face for what he already knew to be my mental state.  I then explained what had happened and what I felt.  His eyes softened and his brow furrowed with empathy as he told me how sorry he was.  He hugged me and kissed me softly showing his care and love.  My dear friend--my BEST friend listened to me.  He paid attention.  He acknowledged.  He loved. 

With apologies to an old creative writing teacher who instructed me to be careful not to use descriptions that don't make sense,  I thought of how I was feeling  and the only words that came to me were, ' My heart swelled with gratitude' and yet I knew that this did not really happen...or did it?  Honestly, it felt like it had expanded.  I put my hand to my chest to contain the happiness that replaced the sorrow.  It was futile. I needed to allow this happiness to be something I could share.  I am so happy to have my husband with whom I can share my feelings.  For some, I realize there is no one.  Yet, as a caregiver, I understand the importance of sharing.  It is not that  caregivers necessarily want to share,  it is that they  must share--HAVE to share.  I have said it before: we should not keep our emotions bottled up inside.  The negative emotions will cause damage not only to our psyches but to our bodies and need to get out.  The positive emotions when shared will bring reminders to others to look for appreciation, joy and happiness.  When we do not have a mate, a friend, or a confident, we must look for others to hear, to witness, and to validate.  There are people everywhere to whom we can turn.  There are support groups, counselors, neighbors, family members and kind strangers.

As an 'Expressive', I document my ever-changing shifts of emotion for all the world to read.  I broadcast the changes to help others to understand and maybe relate to the journey I am taking.  Perhaps others will see, understand  and take action accordingly.  This is my hope.  We are not alone and when we realize this; when we experience the kindness, the thoughtfulness, and the wonderful surprises that fill our lives, then we can face even the most difficult of days.

Controlling Interest

About 10 years ago I had an epiphany. My husband Skip and I were driving in a new car and listening to some music that didn't appeal to us. I reached over to the car radio buttons. I hesitated for a moment to look at the controls trying to figure out what to do. Finding the right button I depressed it to change stations. Like a flash, Skip pushed his fingers to hit the button again.
"What are you doing?" I yelled.
"I'm changing the station," he answered definitively.
"I know that," I answered with a heavy dose of sarcasm. "Didn't you see that I was already changing it?"
Skip didn't answer. This did not make me happy. I wanted an explanation for his behavior. "Don't you think I can change a radio station?" I pushed for an explanation.
"You were doing it wrong," he mumbled.
"What? WHAT?! How could I be doing it wrong? That's ridiculous." To demonstrate that I knew what to do I reached over to change the station again. "Where's NPR?" I asked as I moved closer to the button. Skip's hand was there covering the controls. He brushed my hand away. Unwilling to yield to his knob-pushing prowess, I persevered. I pushed his hand away and studied the controls. A split second later, Skip answered my push with a shove. Before I knew it we were having a push and shove fight with our fingers. We were like a couple of four year olds. We were getting angrier with each assault of the other's index finger. Skip won delivering the station I sought. I was immediately angry and silent. (That's always a bad sign).
Skip wore a victorious expression as he returned his attention to his driving. I however, didn't want to drop the subject and allowed my anger to foment as I thought how bullying it was of my husband to push my hand away. Suddenly it came to me--my epiphany! After so many years of marriage I discovered that he was a control freak!
Oh my G-A-W-D!!! I was married to a CONTROL FREAK!
I was about ready to let him know what I thought of him when it occurred to me that I had given as good as I got (so to speak.) Oh no. There was my bigger epiphany: we were both control freaks. This newfound enlightenment came as not only a surprise but an embarrassment. How could I have overlooked something so obvious? We had been married for...like...uh...FOR-EVER! I couldn't wait to share my revelation. "Hey Skip. Guess what? We are BOTH control freaks." I made this declaration like one might announce that she had received a special award.
Skip thought for a moment and then grudgingly agreed. "I guess that's not too good," he observed.
I nodded in agreement. It became a somber moment as I considered the ramifications. Putting a name on it helped me understand past squabbles. I reviewed the time I told Skip to stop pulling weeds because I was unhappy that he was removing the 'greenery' on our front hill when we were having a party the next day. He continued weeding thus ignoring my attempt to control the situation, and asserting his own control. There were lots of examples that led us to don our battle gear. Aha! Now I understood.
The problem with seeing one's personality deficits is the strong desire to sweep them under the carpet. There was no question that this was a huge blow to each of our self esteems. Perhaps it was best to ignore this knowledge.
Well, as I said when I began; that was 10 years ago. Since then nothing has changed. In fact it may have served to highlight our imperfections and elevate them. I believe that each of us wears our self discovery as a badge of honor. We make no excuses. We embrace our differences and indulge our...um...' similarities'.
I sometimes think that even when we are old and decrepit we will still continue to vie for control of every situation; neither of us willing to give ground to the other. I can see us now. Skip and I will have walker wars as we struggle to reach the TV remote before the other. We may be shuffling and drooling but, alas, we will still be card-carrying Control Freaks!

Jangled

Dawn.  It is so silent. There is a peacefulness in my being.  I take a moment to do my inventory: I feel good.  I am rested.  I have had good dreams. I listen to the house sounds.  The whirring of a fan somewhere, the buzz of a motor, a small ding from my computer in the other room signaling an early incoming  email, the soft snoring from our dog, Kira and the gentle breathing from my husband lying next to me.  I am uncertain if I want to remain in bed a while longer.  I deliberate lazily, still drunk with sleep.  Then comes the sound that jars me fully awake.  My mother has arisen and is walking around upstairs.  The sounds of her footsteps are magnified on the monitor.  Each step reverberates.  Clomp, clomp, clomp.  On and on and on they go.  Each step is an assault on the silence.  Each step jangles me.  I feel my nervous system react as though an electric current is shot through me.  I try to return to that moment just before...that euphoric state...that quiet moment.  It is no use. The noise is magnified in my head and I am wide awake.  The decision to get out of bed is made for me.  I tiptoe quietly out of the bedroom.  (Why am I trying to be quiet when I know that there is no way my footfalls could be louder than the cacophony upstairs?)  I cannot stand it any longer and I go to my mother's room to announce loudly that she must go back to sleep.  It isn't time to wake up yet.  I must shout to be heard because her hearing aid is not in her one good ear.  Still, she doesn't understand.  She is confused by my agitation.  I point at the red light that signifies that it is not yet time to awaken.  ('When the light is red, stay in bed'.)

I ask her, "Why are you walking around and around?"

She replies, "I'm not.  I just went to the door once."  She has no knowledge of what she is doing or how long she has been doing it. Mindless wandering.  That's what I call it. She does it every night and morning. My sleep is interrupted by it every day.

"Go back to bed," I order her loudly. It is difficult to remain calm and loving.  I am immediately angry, impatient, frustrated.  As I retreat to a cup of coffee and a silent family room, I work to calm myself, to remind myself of the loving, caring and gentler me.  I dig it back up from the depths of my soul.  Care giving will be difficult today.  My mother will be tired from her night of walk-abouts.  She will complain that she is sleepy and beseech us to unlock her door so she may go to her room to sleep.  We will explain patiently that she cannot go upstairs to sleep because she must sleep at night.  We do not want her to be wide awake and rested in the hours when we are asleep.  Day after day, after day we explain the same thing knowing that the explanation is futile.  She doesn't remember.  Instead she gives a long suffering sigh.  I am her jailer.  I keep her contained.  I control.  I tell her when to eat, when to sleep, what to wear, what to do, where to go.  I lecture, rant, order, boss, snip, yell, cajole, plead, beg, explain, ask,  shout,  inform, coax.

This is care giving.  The words, care and giving are both contrary to how I am feeling.  I am being selfish and uncaring.  I know this. I have devolved to another state of mind.  I complain to my husband, Skip that I do not want to be like this.  He is kind and understanding.  He listens to my words offering sympathetic replies.  He is far more patient.  I look to him for strength and resolve.  I struggle back up from the abyss of my dark thoughts and begin to mend.  I finish my coffee and await the appearance of our dog, Kira who jaunts in.  Her tail is wagging happily.  She wears a smile on her face as her jowls draw back in a grin.  Her eyes are bright with anticipation of her simple joys--a snack, a walk, a scratch, a pat on the head.  She is undisturbed by the earlier interruptions.  She holds no grudges.  How does she manage this?  I yearn to be more dog-like. I laugh at this thought.  Today, I will think of myself as Kira.  I will attempt to respond to everything with unconditional love. 

I attempt to talk to my invisible counselor--my spiritual guide.

"What is it that is really bothering you?" She asks.

I hesitate.  I think deeply. The seconds tick by.  Still, I do not answer.  Then it comes to me.  I am the jailer and yet I feel imprisoned.  I keep myself controlled, contained, ordered, scheduled. I do not allow personal freedom.  I am my own care giver.  Only...is it possible...could it be?  I do not care or give enough to myself!

Hmmm...I muse, perhaps I will take myself for a walk. I get dressed quickly and take myself outside. The early morning is still cool and silent.  I regard the way the leaves move in the slight breeze, I listen for the bird calls.  I hear the small rustlings of the squirrels as they forage for acorns.  I watch a butterfly flutter past a shrub.  I see the budding flowers that Skip has planted and smile approvingly.  I stop to smell the air.  It is fragrant and fresh.  I am suddenly aware that my raw nerves are calmed...quieted.   I escape into the nurturing environment of natural beauty.  My walk outside provides much-needed respite.  I am refreshed.  My inner-voice tells me I am healed (for now) and I walk back inside. 

Now I am ready to "CARE", to "GIVE".  I face my mother, my job, my responsibility, my care giving task with a renewed vigor, with a sense of loyalty, with purpose, with an understanding, forgiveness, and yes...with love.

Slap-in-the-face Reminder

It was a lovely morning.  The sun was warm on our faces as my mother and I took a walk outside.  Our driveway circles the front of the house then turns to a large pad on the side of the house. This  allows for a good walk circling around without need for too much repetition.    The flowers were blooming along the borders that gave my mother reason to pause and admire the buds and profusion of colors.  My dog, Kira was straining at the leash to continue on our walk and so I left Mom bending over the marigolds.  I glanced back over my shoulder watching to assure myself that she was safe.  She was deadheading the recently bloomed Irises.  I rounded the side yard and approached Mom.  She stood up and smiled broadly.  "Isn't it a beautiful day?" she asked rhetorically.  Sun and flowers.  Blue sky.  dry, light air.  Gentle breeze.  I could understand why she was happy.  Inside the house, the TV blared some inane game show.  I could feel how the change of scenery brightened her mood.  Her childlike enthusiasm was infectious.  I felt uplifted.  Nature is therapeutic.  We spent a half an hour enjoying the morning.  There was little conversation, just a few pleasantries...the weather, the color of the sky, how pretty the flowers were.  I noticed how much my mother was in the moment.  She was appreciating the things that most of us never notice.  She was the perfect embodiment of the expression, 'taking time to stop and smell the roses'.  I took a deep (emotional) breath realizing how all of our lives are spent rushing.  We rush to grow up, to get a job, to make deadlines, to have families, to stay on schedules, to get to appointments, to arrive at events.  We overlook so much as we do so.  Perhaps that is what old age is all about.  It provides time to reflect, to notice what we have missed, and to remind us of those things we enjoyed when we were children.  It was such a good example of the circle of life.

When it was time to go back inside I felt refreshed and ready to tackle a sink full of dirty dishes.  About an hour went by and I looked at my mother.  She was still smiling.  I realized I was smiling too.  It felt good...in fact it felt great!  I wanted this feeling to last. 

I wish that the smiles could remain but a few minutes later I was correcting Mom and the frown was back on my face.  "Don't put your used Kleenex on the table." "Stop pulling the yarn on your sweater. You're tearing it."  

Don't...No...put that away....Stop...

Angry words.  Commands. 

 

I took a moment.  I saw Mom's face.  The smile had disappeared.  I was saddened.  I was too busy to go back outside but I wanted to bring back the smile.  I did the next best thing.  I sat down next to her and looked deeply in her eyes  and told her,  "I love you, Mom."  The smile spread on her face and her eyes lit up.  My own mood changed as though something had shifted inside.  I actually felt a physical change in my chest like it was making more room for my heart.

It was a slap-in-the-face reminder.  I need to pay more attention to how I am feeling.  My mother reflects it back at me if I should overlook it. We are so tied together--our moods, our expressions, our feelings.  I resolved to work harder to bring the sunshine indoors.  I will do this with smiles, kindness and loving words.  I will remember to open myself and allow my heart to expand. 

Immediately the room fills with sunshine.

Grandparent's Weekend

Grandparent's Weekend

Being grandparents has such great advantages.  We can enjoy our granddaughters until we get tired and then we give them back.  That's the rule, right?  In practice, this doesn't always happen though.  This weekend, for example, our daughter  Dorie asked if we would watch the girls while she and our son-in-law Gregg spent the night at a lovely resort for her birthday.  No problem!  We could handle that.  Easy-peasy!

First of all I decided to take our almost 13 yr old granddaughter shopping.  I hadn't done this in a long time and thought that it would be a fun activity. I asked Skip if he would watch Lilly (our 3 1/2 year old granddaughter) while I took Julie to the mall. We got a late start which was largely due to the fact that I was making breakfasts, cleaning up, preparing for Easter, getting Lilly dressed and occupied, taking care of my mother,  and trying to keep things clean and neat.  By the time we left the house I was already tired.  Off we went to the throngs of people bustling about on a busy Saturday.  I asked Julie what stores she preferred and immediately realized that we would be visiting many different stores because Julie wasn't sure what she wanted and where she wanted to go.  I didn't want to rush her but I knew that we had only a limited time to shop before Skip would need relief.  I felt a little guilty leaving him behind to watch Mom and keep Lilly occupied.  I worried that he might be a bit overwhelmed with that responsibility.

When we got to the mall I had to make a quick decision where to go because I had no idea which stores might appeal to Julie.  I have to confess that  I have weaned myself from mall shopping and am not "up" on all of the latest trends among teens.  I do not set foot in the trendy stores.  So, as we walked into the first store I had the distinct feeling that I had somehow traveled to another planet--one filled with bright colors, loud music, sparkle on the floors and sweet smells of myriad perfumes.  Just in case I missed the labels on clothing, every single item was adorned with large print on sleeves, across the front and back with the name of the clothing line.  Every person under the age of 25 was a walking advertisement for a t-shirt or sweatshirt designer.  Furthermore they all seemed happy to pay anywhere from $60 to $200 to advertise who they were wearing.  My granddaughter was immediately drawn to one such shirt that looked like it was missing a good 10 inches off the bottom length.  Really...a sweatshirt that only covered the shoulders and part of the upper torso?  I guess no one would notice the missing fabric because the name of the singer who now had her own clothing line was so huge that was all one would see.  I began to look around to see how many labels we could combine in one outfit.  Could we combine labels to make sentences?  With wry wit I tried to play this game as Julie perused the racks.  I wondered if it was permissible to mix a sports figure label with a singer, or were we supposed to keep performing artists  together?  Could we mix two different sports figures?  Did we need to have continuity of names or could we combine themes?  I had so many questions. Unfortunately I couldn't hear the answers through the cacophony of loud music and heavy rhythms.   After five minutes I had already developed a headache.  I painted a smile on my face and muscled my way through the store trying to look totally cool while feeling like I had fallen through The Rabbit Hole.  I was too old for this.  In just a few short years I had become an  anachronism, a relic of bygone times.  Rather than admit I was feeling like an antique I waited until Julie went into the fitting room to text my daughter to ask if she approved of certain items of clothing that Julie insisted would be fine to wear.  Surprisingly, there was no need to do so because Julie had used her smart phone to take a photo of something she liked and sent it to her mother for approval.  Dorie already saw, responded, and okayed the purchase.  Hmmm...shopping had changed. Technology had become the new shopping tool.  Okay then!  I relaxed a bit knowing that the responsibility of making a decision of what Mom and Dad would allow was not on my shoulders. 

We moved on to another store and after what seemed like eight hours but was in reality only about a half an hour, we found a few other items and I even managed to talk Julie into a few things that didn't have printing on them.  I used a bribe of taking her out to a late lunch to get her to make her decisions quickly and to choose something with fewer graphics that she could wear in the restaurant.

With aching feet I limped my way out of the mall after being accosted by people in the center isles hawking their products, insisting that I try their creams, their manicure products, their hair extensions, their shampoos, candles, and fragrances...practically tripping me as I walked by.  My lips were pursed in a permanent "NO!"  My eyes were averted like I had learned to do when approaching panhandlers.  

At lunch  I texted Skip to check in with him.  He texted back that he was coloring 100 bunnies with Lilly.  I giggled at the mental image.  It was not as complete an image as the one that we beheld when we arrived back home.  Skip was surrounded by all sorts of toys and playthings.  He was sitting at the table with assorted crayons and a coloring book. As we walked in he proudly displayed a page of flowers that he and Lilly had just finished coloring.  When he turned towards me I noticed that his shirt boasted  an array of flower and princess stickers.  I walked into the family room to say "Hi" to my mother.  She was sitting quietly in her chair by the TV.  Her eyes were closed as she took a small nap.  Did she know that she too had been decorated with stickers? 

Both Skip and I had taken a step into our granddaughter's worlds. It had been  a day of adapting.   We had seen the polar opposites and both of us had been totally out of our element...our comfort zones. Fortunately we lived to tell the tale and still profess that grandparenting in one of the finest joys in life.