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. 

Undercover Scones

I was baking some scones yesterday.  My mother was very interested in what I was doing.  She sat at the counter watching, waiting and salivating.  For her, the best thing in life is sugar; yes, sugar in any form, served in any way and at any time.  If I want her to smile all I have to do is provide her with a never-ending supply of cookies, cakes, chocolates, and creamy, sugary delights. I have tried to cook healthy foods for her but  alas, she rejects all things nutritious.  In fact, I have found her picking and eating only the craisins out of a chicken almond salad and then flattening the rest of the salad with her fork in a show of derision.  "I will not eat this!" she complains.  If I were to give her a piece of broccoli covered in chocolate then rolled in sugar crystals, she would remark, "This is DEEELICIOUS!"

The more her Alzheimer's Disease progresses, the more displays of avarice for confections I see.  Okay, okay.  She's 98 years old and in good health (other than being in late stages of Alzheimer's) so why do I insist she eat her veggies?  Why do I peddle protein like a wicked Nutritionist?  In my defense, I am not alone.  My husband scolds her for ignoring her protein in favor of a syrupy morsel.  She scowls and complains.  She pushes her food around her plate like a petulant two year old.

But I digress.  Back to the scones I was baking: they were lovely little bite-sized treats that were coated with a sugar glaze guaranteed to send her blood sugar levels soaring.  I finished dipping and glazing the last scone when I looked at the clock and realized that I needed to leave for an appointment.  About the same time, my husband, Skip went outside to meet with a man from Critter Control about our problem with voles and moles.  (Yes, we have pests running rampant among our plants chewing roots and digging tunnels in the grass.  To be clear, the moles dig the tunnels and eat insects and worms while the voles borrow the tunnels to find their way to the roots of plants.  Their penchant for devouring all edible greens is truly legendary.  I wish that they could teach Mom to enjoy greens as much as these small rodents!)  Anyway, as I was saying, I had just finished my job of baking the scones and realized that the drying rack was too tempting to leave out.  As soon as I might exit the kitchen my mother was sure to be all over these morsels like  flies on flypaper.  I began to look around for how to hide the drying rack.  It was too large to place in a cupboard.  Skip suggested I put it on the washer in the laundry room and close the door.  I laughed sardonically.  Mom had not met a door she couldn't open.  In fact, she was a known escape artist.  She even managed to figure out how to get baby locks off of cabinets.  A closed door was certainly not going to keep her away from the scones.  I decided to place them in the cooling oven even though I risked a slight drying or melting and compromise of texture.  I couldn't risk leaving my mother alone with the scones.  So under cover they went.  Hidden from my mother's search and discovery I could safely leave home to make my appointment.

One might think that this is quite petty of me. If Mom wants a scone why not let her have a scone?  I hasten to remind the reader that a person with advanced Alzheimer's doesn't remember things from moment to moment; so as soon as Mom eats a scone she will reach for another thinking it to be the first one she has sampled.  This will continue until she gets sick to her stomach often resulting in what I delicately refer to as tossing her cookies!  So I control the amount of food intake and sugar she has.  Oh, and one more little fact; sugar gives my mother horrible indigestion.  We are constantly administering antacid tablets.  (We buy them in bulk!) I really do try to keep some semblance of balance while still giving Mom what she loves.

Over the years I have received supportive comments from friends who tell me I am a good daughter.  I am always happy to hear this when I am struggling with the issues that I have as Mom's caregiver.  This week, for example, I yelled at her when she blew her nose in her sweater.  I had the option of responding the right way or the way I wanted to respond.  My two mini selves (the good mini-me and the bad mini-me) sat upon my two shoulders.  One cautioned me to think carefully how to react. "Just hand her a tissue and then take her sweater off and replace with a clean one."  The other told me "Go ahead.  Tell her how you feel! You know you want to.  It's not good to suppress your feelings!"  Guess who won?  I shouted, "MOM!  What are you doing?  Why did you blow your nose in your sweater?!"
Mom replied, "It wasn't a big blow.  It was just a little blow."
I felt steam coming out of my ears as I bellowed, "I don't care about the amount of blowing.  I still have to wash the sweater now!"  (I said a few other things too and Mom turned around to face me indigently complaining that she did not like me yelling at her.)  I continued for another few seconds until my anger subsided and then left the room.  To those dear friends who think that I am a saint; I confess I am most definitely not!

So, here I sit with the knowledge that it is nearing my mother's tea time.   The angelic side of me says, give Mom as many scones as she likes while the devilish side of me says to give her one bite-sized sample and remove the rest.  What to do, what to do. I am still ruminating over the nose-blowing incident.  I am also reminded that my mother (who never ever goes into our inner sanctum -- the master bedroom) found her way to our bathroom instead of using the one which is designated as hers and which has her toilet chair and easy access.  I looked up from my work and saw that she was M.I.A, called for her, walked around the house looking for her, becoming increasingly worried as to her whereabouts, and then finding her wandering out of the bathroom. She had not flushed the toilet.  She had not used the toilet paper.  She had been less than careful.  (I will not go into details.)  I was livid.  My mini-me's were both screaming in my ears. When confronted she was defensive and irritated with me for being upset.  Yes, I was thinking of the other incidents and how difficult things were becoming. Mom's attitude was far more argumentative after tea-time. Suddenly, I had an epiphany and at that moment I made the decision.  Sugar makes Mom happy but too much sugar makes her cranky. What I did was obvious. The answer could be read as a news headline: Scones Stashed in Effort to Save Survivors! 

In the Moment

In the Moment:

10/24

I arose from too little sleep to the aroma of freshly brewed coffee.  My day was beginning too early but the coffee beckoned me with a warm and welcoming fragrance that assured me that my world would be brighter with a jolt of caffeine.  Sipping from my mug, I began to take stock of my circumstances, my attitude, my inner and outer environment, and my emotional state.  I waited.  There was nothing noteworthy.  Everything was status quo.  Aside from a dull headache that I attributed to lack of sleep, I felt fine.  Nothing hurt, nothing bothered me. My attitude was neutral.  The room was neither too hot nor too cold.  I was in the moment and there was nothing to report...nothing to note.  I continued to sit, to wait, to explore.  NOPE...Nothing!  It was like I was in meditative block (like writer's block, only more philosophical).  My brain was quiet.  My inner voice was silent.

I was struck by the peacefulness of this state of being.  How restful it was not to be thinking of anything at all.  I enjoyed the quiet as I drank my coffee...my rich, warm coffee.  It was such a pleasure  to sit without being accosted by the blaring television and burdened by negative morning news.  I closed my eyes and floated in this state of blissful being...just sitting and doing nothing, totally detached from everything.  It only lasted a short while but it was luxurious, decadent, self-indulgent and wonderful.  Too soon, footsteps signaled that my mother was awake and needing assistance; my husband was ready to take the dog out; it was time to prepare breakfast.  Too soon the sounds of the morning activity intruded my inner sanctum with the urgency of beeping alarms to announce that the toast was ready, that the microwave had heated something, that an email had arrived on my computer.  Too soon, the room was filled with faces...people that needed, wanted, love, laughed, enjoyed, shared, and emoted.  I changed my focus to them and felt the moment shift to the deep commitment I had made to be part of their lives.  Detachment is only good for a moment. It allows me to revive, renew, and refresh.  But the need to be tethered to a family and to a purpose is very strong in me.  I took a deep energizing breath--a yoga breath, the kind that fills the body from top to bottom, and began my day with a certain resolve that clearly held the traces of gratitude.

Making a Difference

I was sent an inspirational message this morning.  After reading it, I was reminded of something that happened to me several years ago.

When the children were in elementary school, L.A. City Schools did away with the Arts programs in order to fund bussing.  I decided to mobilize the many talented parents to bring the arts back to our children's school.  I wrote and directed a musical play for a cast of over 150 of the students.  I also made sure that we had a chorus, dancers, and orchestra for the production.  Then I had those kids who were into theater production do the stage sets, scenery, and behind scenes production.  It took us many months of lunch hours and after school to get the show off the ground but eventually we put on one of the biggest and best musical theater original productions the school had ever seen.  Years later, while my husband and I were on a trip to Italy we were on a tour bus to Pompeii.  A young woman was seated across the isle from me.  She kept staring at me and finally I asked her if there was some reason she was...um...looking in my direction.  She replied, "I think I know you!"  I looked at her and studied her face. She was no one I knew.

"No.  I don't think so," I replied.  "Perhaps you have me confused for someone who looks like me."

The young woman was insistent. She noticed that we were both Americans and asked where I was from.  I told her that we were living in North Carolina.  She shook her head sadly.  "No.  I guess not.  I don't know anyone from North Carolina," she replied.

"Where are you from?" I asked.  When she told me Los Angeles I replied that we were originally from L.A. Then I asked her what part of L.A and when she replied that she lived in an area where we had lived we began to narrow it down more and more. It turned out that we were from the same neighborhood!  Eventually it struck me that this person was about the same age as my children. I asked if she knew them and she replied that she didn't.  Suddenly the light went on and she cried out, "Oh my Goodness..YOU'RE MRS. BRYAN!!!" 

"Yes," I replied, still unsure of who this person was. 

Then she announced enthusiastically, "I am Fifi!  I mean, I was Fifi in your play."

I immediately remembered the character of Fifi, the star of the show. I had cast a young shy girl with a beautiful voice and a hidden talent for acting.  I encouraged her to step out of her shell and to push herself to 'emote.'  I worked relentlessly as I taught her how to project, act, perform, and 'sell' her character to the audience.  The girl was a huge success and was the talk of the school. 

Now a mature young lady, she smiled broadly and told me what had happened to her after she graduated elementary school. She continued to act, sing and dance.  She enjoyed the theater arts, public speaking and other related classes and activities throughout her educational career.  When she graduated from college she told me that because of her self confidence (something she claimed she did not have until I taught her to act and 'FORCED' her to face her fears) she applied for a job in Public Relations. It was a great job that involved speaking to large groups of people all over the world.  She traveled everywhere and had a fabulous and glamorous, well-paid vocation that she claimed she would not have had if not for what I had done for her. Then she spoke the words that I will never forget.  "It was because of you, Mrs. Bryan.  You made the difference in my life and I want to thank you."

My heart swelled.  I was so glad that we had met so many years later and that she recounted her 'story' and outcome.  I realized that it was a rare experience to know what happens to people with whom we lose touch but whose lives we have touched. What she had given me was a gift.  It reminded me that whoever we are and whatever we do, it can cause a ripple; it can make a difference; it can change a life.  Sometimes we think that we are unimportant...that the things we do go unnoticed.  Then something like this happens and it brings meaning to everything...absolutely EVERYTHING we do.  It was a turning point in my life.  I knew that my thoughts and actions mattered.  For each of us, we are given a certain amount of time on this Earth.  As we journey through life, we often judge what we do in a very personal way without ever really realizing how it may affect others.  I walked away from my meeting with this young lady with a newfound appreciation...a wisdom...a commitment to be accountable for my actions.  From that day forward I tried to treat each encounter with another human as an opportunity that should be cherished, nurtured, and respected because anything and everything can, and sometimes does make a difference.