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. 

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!