No Time for Tea

She asked me to join them for tea.  My mother and father were seated at the round table in their attached apartment, napkins folded neatly, two plates placed in front of them, two cups ready to be filled with the hot liquid, and a small plate of home-baked cookies placed in the center of the table.
My father was less than enthusiastic about drinking tea, but humored my mother with her daily ritual out of love and devotion to her.  I, however, didn't exhibit the same loyalty to the practice of stopping everything to imbibe in a cup of steaming hot Lipton (my mother's personal favorite.)

"No thanks, not today," I told her.  "I need to get back to work."  I held the borrowed cup of flour in my hand ready to go back downstairs...back to my own kitchen in my own home even though their apartment was merely a doorway away from my kitchen.  I needed to finish the cooking and get the dinner started before I returned to my work projects.  Within 15 minutes I would be back at work, talking to clients, answering emails, adding notes to my files.  There was no time for chit-chat with my parents, no time to spend idly sipping tea, tasting Mom's cookies, and hearing about how she thriftily used the stale grape nuts cereal to add extra crunch.

"Well at least take a taste of my new recipe," she insisted as she held out a cookie on a napkin.

Reluctantly, I took a small nibble already detecting that once again, she had left out a critical ingredient.   The expected sweet taste was missing.  The cookie tasted like a dog biscuit.
Mom was becoming forgetful.  Her baking skills were diminished by her inability to focus.  It was begining to happen too often and I knew that soon, she might have to give up cooking altogether.  For now, my father didn't seem to notice and the two of them continued to dine in their kitchen upstairs, contented with the bland fare, perhaps remembering that Mom used to be a great baker and convincing themselves that she still was.

"Well?" She asked expectantly. "What do you think?"

"They're good," I lied rushing back downstairs.  I knew that a plateful would be delivered to us within a few hours for us to 'enjoy' at our leisure.

I left the door ajar and could hear my parents talking quietly together.  They were planning what they would watch on TV that night.  I heard discussion about eating leftovers from the night before for dinner.  Mom asked if Dad had remembered to take his pills.  There was just simple, every day, unimportant conversation and yet it spoke of the normalcy, the simplicity, the harmony and the beauty of living together so many years.

That was about two months before my father passed away.  He had Alzheimer's, a bad heart, and prostate cancer.  We didn't know at the time that he was terminally ill.  We were told that he still had lots of time left.  He was still cogent, conversant, (almost) self-sufficient, pleasant to be around.  Oh there were tell-tale signs of course!  He began mixing colors...outragious blends of maroon and orange.  He lost things.  He forgot things.  He got confused.  But still he smiled, joked, and lovingly indulged my mother and her need to sweeten each day with her baked confections.

When I think back to those days, my care giving duties were minimal.  They took care of each other in ways I never could. Their 61 years of marriage were enough to sustain them even when they began to need supervision and more care than they could provide themselves. I used to laugh about their antics, their signs of aging that were both frustrating and endearing.  They were both hard of hearing, distracted, slowing in oh so many ways.  But they smiled and laughed, remained positve and upbeat.  They loved each other like no others and set a phenomenal example for all of us to follow and emulate.  To look back at those days, to remember how they were together and with us, I feel the bittersweet lump in my throat.  It isn't regret.  It isn't guilt.  It's something else.  Maybe just a yearning to experience them once more...just for a moment...to go back to that time when I innocently believed they would live forever.

The lost opportunity to sit with my parents, to enjoy 15 minutes of relaxing, talking, remembering, listening and experiencing the activity of doing nothing more than enjoying each other's company weighs more heavily on me today.  I had a dream...a message in my sleep that alerted me to the fact that I am allowing time to slip through my fingers.  How do I stop this?  How do I seize all opportunities to cherish each waking minute.  I thought about my time caring for my parents as a difficulty, a diversion from doing my own work and exploring my own interests.  Yet now I appreciate the richness of the experience. It allowed me the time to spend with them. It gave me irreplaceable memories.

It has been 17 years since my father passed away, and one month since my mother joined him. Today I am free to do as I please without the responsibilities of caregiving.  However, the joy of having them nearby, of reaching out to touch their arms, to trace the lines on their faces, to feel the warmth of their skin, lingers in my mind and heart.  They will always be a part of me. I just wish...OH how I wish I had a chance to sit and have just one more cup of tea at their little kitchen table, hear their laughter, see their smiles, and taste the wonderfully awful grapenuts cookies.

When it Rains, it Pours--LITERALLY!

What a week it was last week!  Mom has been her usual self and I have had a full week of watching her.  She has manically walked in and out of the house to the porch, the kitchen, the hall, the kitchen, the porch.  Over and over...round and round she goes.  Each time, she leaves the door to the porch open and I can practically see the dollar bills flying out the door as the cool air escapes into the hot muggy outdoors. In between these meanderings, Mom always circles the kitchen touching everything that is left out.  If food is out she snips off a piece, samples, bites, or pokes her finger into whatever the item is.  This is a problem because her hygiene is so poor I cannot keep up with where her fingers have been.  I shudder just to think about it.  The other day, Skip made the grievous mistake of leaving half a peach out on the counter.  Mom had just finished a large lunch including her fill of peach slices, but in her demented state she didn't remember this fact and so she stood up from her place at the counter, (some sandwich still on her plate) and picked up the peach.  My attention having been diverted for a moment didn't notice this and therefore it wasn't until Skip returned for his remaining peach half that I saw what had happened.

"Um...did you take a bite of this?" He asked accusingly. He held up the peach with a large bite right out of the center of it.

I laughed out loud.  "Really? Would I do that?!  If I wanted a bite of your peach I would have taken a knife and sliced a piece off."

Skip nodded in agreement.  He knows my habits and realized immediately that he was 'barking up the wrong tree'.  Then he cast a dark look at my mother.  Imagining the germ-infested peach, he handed her the rest of it.  I felt sorry for him because it was a really lovely peach. (We haven't had many of those this year.)

Caring for Mom is a full-time job, but there are always other things in our lives that keep us spinning, our lives in turmoil, and our days full of distractions.  For example, it is currently hurricane season here in North Carolina which means that when a storm develops out in the Atlantic, we immediately go into our hurricane preparedness mode.  Store shelves are stripped of bread, water and milk. (It's the same if snow is predicted in the winter.)  I don't quite understand this because having been a native Californian my experience in natural disasters was limited to those things one cannot predict: brush fires and earthquakes. Both happen so fast, one doesn't have time to think about what to do.  In California, one just sleeps fully clothed with wallet and cell phone in hand along with car keys and extra batteries in a hip pocket!  I have learned though.  OH MY, have I learned!!!  When in the South do as Southerners do.  Get yourself to the grocery store and buy everything off the shelves, girl.

A couple of days ago, I decided that with the projections for a major hurricane to hit our area in 6  days, maybe I should send Skip out to look for some supplies.  Well, obviously I wasn't the only one thinking that way.  In fact, the entire county seems to have been of one mind and the shelves had already been stripped bare.  Sadly, the one thing that we REALLY needed was nowhere to be found.  We needed a generator.  This was not a convenience but a necessity if we lost power because our sump pump would stop running and (as we experienced in the last hurricane) our basement flooded.

So...Skip went out looking in three or four surrounding counties to see if he could find a generator for the sump pump.  We weren't looking for anything special.  Really, anything would do.  Since Skip was running around on this errand --ALL DAY!!!--I was stuck dealing with my mother without respite.  She was in a particularly zombie-like mood wandering to and fro.  I was trying to get some work done, but between Mom's meanderings, Skip's phone calls asking me to check various websites for availability of the elusive generators, and the oppressive heat, I was not in the best of moods.  By evening, we finally resolved the generator problem when we found one in Charlotte (three hours drive from here).  However, with our daughter and son-in-law living in Charlotte, we could have them pick it up for us and deliver  since our son-in-law was meeting Skip at a halfway point between here and Charlotte so Skip could drive our granddaughter, Julie to a special dance lesson in Raleigh.  Don't even begin to ask me about how we worked that one out and how many phone calls it took for us to figure out that Julie could leave school and make it in time to take a lesson from a choreographer who is well-known in the dance world...an opportunity that just could not be missed!

That night when we finally settled down after dinner and decided to rent a movie to relax and enjoy after putting Mom to bed.  We were just getting into the movie when we heard a blood curdling scream.  I realized it was coming over the monitor system.
"That's Mom!" I shouted, getting up to run to her room.  Before I reached the door I heard her crying out, "God help me."  Now I  KNEW something was wrong.  I ran into her room preparing myself for whatever disaster awaited me.  Mom was sitting on her bed, eyes wide as saucers, telling me that someone was screaming at her.  "That was YOU," I announced.

"No, no.  Someone was screaming and telling me to take it off the mungo muddle..."  Her aphasia had kicked in so I have no idea what she was saying after that.  I finally convinced her that she was having a bad dream, rubbed her back and calmed her down enough to get her back to sleep.  I was about to step back out of her room and return to the movie when she popped her head up, looking like something was terribly wrong.

"What's the matter, Mom?" I asked. There was no response.  I came closer understanding that she had difficulty hearing me.  "Mom?  Is something wrong?" I asked two more times before she replied.

"I have to go to the bathroom," she told me getting up.

I helped her to the bathroom waiting patiently while she moved slower than a snail.  When she finished and opened the door I noticed that her wet diapers were placed on the sink and there was a puddle on the floor.  The toilet was the only thing she didn't use.  "Clean up on aisle five!" I announced over the monitor and Skip came running up with the wet mop.  The movie would have to wait another 15 minutes.

That brings me to my reason for writing this today.  I had a live webcast I was invited to do today as a guest author.  The last time I did something like this I was invited on a podcast and my internet connection was very poor.  We kept disconnecting and the podcast was cancelled.  I was frustrated and angry when my husband explained that my location I chose for the interview was a weak location.  Therefore, I tested the webcast connection and location the week prior to the live show to make sure I had a perfect connection, location, lighting, etc.  I told everyone that I was doing this so not to call me during that time.  Just to be safe and to avoid those pesky robo calls that occur with regularity every 20 minutes or so, I turned all of the phone ringers on mute.  Then, I told Skip that we should have lunch early just to make sure that there would be no noise coming from the kitchen during the show.  I got my lap top set up in the library, set my chair at the perfect angle, adjusted the lighting and even put a note on the front door saying, 'DO NOT DISTURB.  BROADCAST IN PROGRESS.' I needed to advise our son, who often comes downstairs from his apartment to say 'Hello', but I was out of time so I told Skip to text him while I grabbed a sip of lemon water and returned to my laptop.

With all of the preparation, one would think that nothing could go wrong.  Au contraire.  This is MY life we're talking about.

About one minute before going live, my mother's elder monitor began to beep loudly.  Having been told that the video broadcasting equipment was very sensitive to the slightest sound, I made the decision to take a nose dive to turn the interrupting speaker off.  Only, I couldn't see how to do that so I unplugged it and threw it across the room returning to my seat just in time, adjusting my hair, my lipstick and my blouse in time to smile broadly and greet the hostess online.  Whew!  The guest panel was introduced with not a moment to spare.  As the hostess asked each of us to introduce ourselves I noticed that my screen froze, I hurried to refresh the url and was fortunate to make it back in time for her to get to me.  I was dividing my attention between the introductory comments and my intermittent Internet connection.  When a question was asked of the panel, I couldn't wait to answer but as I spoke, once again the screen froze, and this time there was no recovery.  My Internet was down.  I had to exit and try again.  It took much longer than the first time and when I returned the panel had moved on.  The hostess very kindly returned to me to get my response and I was able to complete my thought but not without being distracted.  I had lost my train of thought in the moment of panic and didn't recover as well as I would've liked.  Being used to my frantic days, I have learned to think quickly and found something intelligible to say.  We moved on to another subject and suddenly, in the background my phone in the kitchen rang.  What?!  I had turned all the ringers off.  How could that happen.  Skip was outside and had to run in to catch the phone on the second ring.  I heard his voice in the background and quickly put my laptop on mute.  What else could go wrong?  I didn't have to wait too long.  Suddenly the door swung open from the screened porch.  Mom came barreling inside complaining that she felt like she was going to throw up.  She was followed by our dog who wanted to play and my husband who was trying to maintain order and silence.  I tried to ignore them and continue listening to the discussion hoping to be able to keep my wits about me in view of the pandemonium in the other room.  A question was asked but I missed it because my computer froze.  The hostess asked me when I reappeared if I had a comment.  (About what?  Uh...um...'NO').  All in all my computer froze five times and I tried to follow the show as best I could, but felt kind of like a blind person in a paint store.  The final straw was  when the side door opened and our son came downstairs looking for all of us.  He wandered around the kitchen, then went back upstairs to the attached apartment closing the door noisily.  (UGH).  A little while later, his girlfriend started her car just under the library window then stopped, went back inside, closing the side door, then reopening and returning to her car.  (Later, I found out that her car was not acting right and they had called a tow truck.) There was more door slamming and then silence just as the hostess was saying goodbye and thanking her guests.  I mutely waived goodbye smiling broadly and exited the show.  Taking a deep breath I looked for Skip.

"How'd it go?" he asked innocently.

"How'd it go?  HOW'D IT GO?!  OH MY GOD!!!" I yelled. "I live in a mad house, that's how it went."

Skip looked hurt.  "I'm sorry about the phone."

"...And Mom, and Kira, and the doors, and Bill coming in.  I thought that you texted him."

"You said you were putting up a sign," he answered defensively.

I rolled my eyes.  What was the point of arguing that I told him to text our son.  Instead I told him about the Internet issues.

"Well that's not the strongest signal in the library," he answered.

"It was fine last week," I reminded him.

"Well, that's because all of us weren't at home and on the Internet at the same time."  It turned out that Skip was watching the weather reports, Bill was up in his apartment on the Internet and there were probably at least three devices accessing the Internet as well.  My eyes were bugging out and my head was exploding as I tried to take in this last bit of information.  To make matters worse, Skip had to leave to go pick up our granddaughter and didn't have time to talk or to make me feel better.  Skip left the room to move on to his next task leaving me with my mother who decided that going in and out of the house leaving the door open each time was how she wanted to fill the rest of the afternoon.  I resigned myself to the fact that my life is destined to be this way...crazy, funny (if you choose to laugh) and certainly nothing boring about it!

Skip just announced that our air conditioner has stopped working.  We have a call in to the air conditioner people but I won't be answering the phone.  I will be the crazy woman sitting in the padded cell laughing maniacally.

GRAMA-RANG.

I know that my sense of humor sometimes downplays the angst I feel about my mother's progressing Alzheimer's.  Skip and I are handling it the best we can. As a new situation arises we deal with it.  We are coping and have been for several years now.  But sometimes I just HAVE to laugh.

Among those things I find funny is how my mother responds to my attempts to protect her.  For the longest time, for example, we were reluctant to install a camera in my mother's room preferring to allow her privacy while monitoring her via an alarm system and a baby monitor that enabled us to hear what was going on in her room.  If she needed us we were there in an instant.  Of course, that was when she was more conversant.  But now Mom doesn't say much.  If there is an emergency she is likely to remain silent.  We often hear the strangest noises coming from upstairs without a clue as to what they might be.

For weeks, I kept hearing a sound that sounded like a zipper being zipped over and over again.
"What's that sound?" I asked Skip one night.  "I keep hearing it."

"What sound?" Skip replied.  He strained to listen more closely to the monitor even carrying it into the family room where we sat watching TV.

I listened and waited.  There was nothing but the sound of my mother's walker banging into the wall. "Well, it's gone now.  But I heard it!"

"Hmm."  Skip looked at me with an expression of doubt.

A minute later I heard the 'zip' again.  "There!  Did you hear it?" I shouted triumphantly.

"Yes!  Hmmm..." He said again.  It was somewhat like taking my car to the mechanic complaining of a squeak and having them actually hear it.  I felt vindicated.  Now we both wondered and mused as to what the mystery sound could be. There were no zippers in Mom's room.  Perhaps she was raking her fingernails across something that was textured.  There were other sounds that were similar.  We were able to identify those sooner or later; like the hairbrush scrubbing the seat of her walker, the plastic bags being folded and refolded then stuffed into the storage compartment of the walker, the locking of the brakes, the wheels squeaking  There was the sound of Mom pulling on the locked door of her closet, the click of the light going off and on, sheets being ruffled, drawers being opened and the contents being moved around.  All of these sounds were detectable.  The 'zip' was not.  It was the last straw--what drove us over the edge to purchase a camera.

The next day, Skip came home with a super, duper, state-of-the-art camera with night vision, and a wide-angle lens.  The associated app enabled us to remotely view on Skip's cell phone and even record activity.  After setting it up all we had to do was wait until we put Mom to bed.  We hovered over Skip's phone like we were watching a reality TV show.  All that was missing was the popcorn snacks.

"Look!  She's moving!" I announced. Mom changed positions on her pillow and pulled at the sheet.  We watched with rapt attention.  After several uneventful minutes something happened that we had not expected.  Mom sat up and moved to the edge of the bed where she continued to sit for the next three hours--not changing her position other than to lower her head to her chest.  In the beginning we weren't sure what she was doing but quickly determined that she was sleeping sitting up, head in hands and swaying slightly back and forward.  Skip went upstairs after the first few minutes to try to put her back on her pillow but the moment he left the room Mom popped back up and resumed the sitting/sleeping position.  So that's how she continued until we grew weary of watching.  Then came the sound--the 'Zip!' I ran to the phone to see her bent over her walker.  'ZIP'.

"Oh my God!  It's in her walker!" I exclaimed jubilantly.  I watched as she lifted the lid of the seat and on the back side there was a small compartment I had never noticed.  Lo and behold there was a zipper!  Mystery solved.  Thank you super-duper-night-vision-camera!

As the days turned into weeks, we discovered that the indoor camera was more of a menace than a helpful tool.  Watching Mom at night became a frustration rendering us nervous and constantly sitting vigil to her nighttime wanderings.  We realized that Mom was awake a great proportion of the night and early morning hours.  She took catnaps and the rest of the time simply wandered about aimlessly or manically.  Furthermore, since my phone didn't have a compatible operating system, Skip became the designated 'watcher'.  One night, while observing the nocturnal activities, Skip gave a loud groan.  "UGH!  She just took her nightgown off! She's NAKED!!!"

"Turn it off, turn it off!" I yelled.

Skip dropped the phone and rubbed his eyes like his retinas were burning.  I retrieved the phone and discovered that my mother preferred wrapping herself in bedsheets to wearing a nightgown.  She began pulling at the sheet and twisting herself in it like a mummy.  The worst part about that was the sheet, being loosely attached to the bed rendered it impossible for Mom to cruise around the room.  She would manage to move about a foot away from the mattress and get yanked backwards.  I watched her fall back on the mattress.  Being resilient and determined, she tried again, and again...and again. Each time she bounced backwards returning like a Boomerang. I debated running to her rescue but knew that she would just keep doing it.  Hadn't we seen it before?  The first week of our remote viewing we had run upstairs to stop Mom's potentially dangerous actions, the near-accidents, the potential falls because she had forgotten to use her walker.  Then, realizing that the moment one or the other of us exited the room after righting the situation, Mom was right back at whatever she was doing before we stopped her.  Such was the case with us trying to get Mom to lie down. I watched as Skip left the room and immediately my mother popped back up to her sitting position.  I wanted to laugh, thinking that she was like a human Boomerang...A MAMA-RANG, or maybe we'd call her 'Gramarang'.  Yeah, I liked that just fine. It worked for everything she did lately.  We'd point her in the direction of the bathroom and she would circle back without stopping.  Or she would walk past us when she came inside and we could see her making a bee-line for the food on the counter. We would run interference turning her in the opposite direction but she would doggedly Gramarang herself back to the food.

"I wonder how long she's done that--the sitting up thing?" I mused out loud.

"She's probably done all kinds of things that we would worry about if we had known," Skip replied.

"Yeah...but now we DO know!" I replied pointing at the camera.  "UGH.  We'll never get any sleep."  Then I thought about it.  We could attempt to restrain her, to drug her, to drive ourselves crazy running up to her room to save her from herself; or we could allow her to do what  she wanted.  She was 99 years old and had earned the right to do that.  Why did I feel the need to protect her?  Someone her age, her condition, and her lack of understanding COULDN'T be protected. The moment we put a stop to one thing that could be a hazard, she would turn around and repeat it.  I sighed deeply and picked up the cell phone, turned the camera off and put the phone on the counter.  There would be no more Gramarang-watching tonight!

Blank Screens and Striptease Sundays

 

 Mom has supplied me with enough material to fill a book this past week.  Late stages Alzheimer's provides us with quite a challenge, lots of mess, plenty of difficult moments, and more and more that we can shake our heads at. I am finding that every day she has at least one outburst, stubborn, or agitated moment.  She ignores, plays deaf, scrambles her words and thoughts, misunderstands, does something unprecedented, does something unsafe, and throws the house into turmoil.  She's just one little old lady but my oh my can she create drama! 

So...this week when I was mentally and physically exhausted and wanted her to go to bed I announced cheerfully, "It's bedtime, Mom.  Are you ready to go to bed?"  (I shouldn't have asked.)

Mom's answer was a definite, "NO!"

"No?" I replied a bit dumbfounded.  "Aren't you sleepy?  I thought that you wanted to go to sleep."

Mom didn't reply.  She turned to watch TV.  Evidently there was a commercial on that held far more interest than human interaction.

"Mom?  Can you answer me please?"

Mom continued to stare at the television even leaning forward to feign far more interest than usual.  (Now, I must take a moment to clarify that Mom never follows anything that is on TV.  She watches but doesn't know what she is watching and has no comments about anything that is on.  If I ask about something like, 'Did you see that cute dog?' she stares without comment and if I continue to ask, she tells me that she wasn't watching.) So, I knew that the TV was not something that was distracting her with a riveting message.  "MOM!  Pay attention to me!" I insisted.  "Did you hear me?"

(No answer.  Not even a twitch.)

I could feel the impatience welling up inside.

"Mom!  MOM!  MOM!  M-O-M!!!!"

Still nothing.

I tapped her on the arm.  "Mom can you hear me?"

"I don't want to go to bed," she answered.  

(AHA!  She did hear me!  Now I knew for a fact that she was simply choosing to ignore me.) "Turn the TV off," I told Skip.  Then I stepped in front of my mother and lectured her like she was a small child.  "You're being rude. When people talk to you, you should answer."   

Mom looked past me to the blank TV screen and remained silent.  I sighed deeply and sat down relishing the quiet in the room with the TV turned off.  "Okay, we'll just sit here then.  I went back to my laptop where I was editing something and Skip went back to his laptop to read a news article.  The fan overhead continued to click as the blades circled around and around rather like a clock...'tick, tick, tick, tick.'  It was making me sleepy.  Minutes passed and I looked up to see my mother staring blankly at the TV.  I couldn't help myself...

"How's that show you're watching?" I asked.

"It's okay," she answered without enthusiasm

.

"What's it about?"

"Oh.  I don't know yet,  I just sat down."

"Well let me know if it's good," I continued cheerfully. She leaned forward as if to see the screen better.  I waited ten more minutes enduring the frustration of watching my mother stare at a blank screen until I finally had enough and got up, took Mom by the hands and led her to her room.  "You're going to bed now," I told her kindly but firmly.  Mom followed like a dutiful child.

Fast forward to Sunday when the weather was warmer but not as hot as last week . That's when I had  the unfortunate encounter with Mom (when I tried to bring her inside from the screened porch because she was frying her brains out there. )  She had a tantrum and lashed out at me yelling that she wasn't hot.  Well, this week and particularly Sunday when it was at least 8 degrees cooler, I looked up from my seat in the family room where I can keep an eye on Mom just outside the window.  I noticed her moving around in her chair. I thought that maybe she was getting ready to come back inside.  Skip was sitting across from me and blocking a complete view so I asked if he could see what she was doing. 

"Oh no!  She taken her blouse off!" He announced with a groan.

I too groaned audibly.  Needing to save my work on my laptop, I put off going outside for a minute.  Meanwhile Skip decided that he needed to be anywhere but where he was and made a quick retreat to his office.  By the time I stood up Mom was bending over and wriggling about.  I rushed to the door in time to catch her taking her pants off and about to remove  her bra.  "STOP!"  I told her.  "What are you doing?!"

"It's too hot!" Mom complained pulling at her bra.  

"Nope...no...nun uh.  These stay on!"  I began to put her pants back on and Mom threw a fit.  

"It's too hot!  Stop it!!!"

I strong-armed her back into her clothes and took her inside explaining fruitlessly that one doesn't take one's clothes off in public.  (In fact, with the new construction going on next door to us if it had been a weekday Mom would have caused some poor workman to have nightmares.) 

When Mom walked back inside I could detect the familiar smell of wet diapers and told her to go to the bathroom.  

"I don't have to."

Hmm.  I guess I had to agree that the horse was already out of the barn so to speak.  I looked away for a moment and Mom sat down on Skip's chair.  "Don't sit there!" I yelled as I turned back.

"Why not?" 

"Because you're wet and smelly," I mumbled.  I knew that she couldn't hear me and that made it okay to verbalize.  While she waited for an answer I did what I try not to do.  I let my inner child out deciding  to give her a taste of her own medicine.  I turned away from her and averted my gaze. I acted like I never heard her question.  She stood there waiting for me to answer but stubbornly I refused.  Then I noticed that there was a TV commercial  on.  "Yep," I told myself. "Two can play this game."  I walked over to the TV and stood there totally engrossed in a toilet bowl cleanser commercial because, well, you know...it was just so very interesting!!! 

The Memory Keeper

Available Now on Amazon and Kindle

I am a writer.  That's difficult to say when I'm so busy being a caregiver for my mother who is 99 years old and has had Alzheimer's for 15 years. Mom lives with us.  She is in advanced stages now but was exhibiting signs of Alzheimer's even while my husband and I cared for my father who also had Alzheimer's.  No one...NO ONE is prepared for this!  There's no caregiver's manual that tells us how to do this job.  I decided that as a writer it might help others  to write about caregiving in the non-clinical, in the trenches, personal experience, kind of way.  I have found ways to help myself out of my depression, anger, denial, impatience, sadness, and frustration.  I've discovered so many things to help me through the most difficult job I have ever experienced.  How could I do anything BUT write about this to help others? My latest book, The Memory Keeper, is the fourth in a the series of our journey and experience  dealing with the devastating disease and condition. It was a cathartic process to share my words, my thoughts, my emotions.  They are sometimes raw, sometimes irreverent, often loving.  I am resolved and accepting of what is to be, in a philosophical kind of way; but I also see the humor in some of the events that lead us there.  Because of my writing style and the way I deal with the often taboo subjects (that one simply doesn't discuss in polite society!) many others have written to me thanking me for my candid discussion of these difficult issues.  One reader who attended a book signing proclaimed that my books were like her own personal therapy sessions.  Many have thanked me for giving them permission to laugh through their tears.

In my book, The Memory Keeper, I take it upon myself to record and retain the legacy that my mother leaves as I grapple with my own emotions and difficulties of caring for her.  Her memories are lost...imprisoned in the disease-ridden brain that doesn't allow for thoughts, speech or even physical control.  I alone must pass down the family stories.  I alone must chronicle the life of the wonderful, beautiful, elegant, vibrant woman who used to reside in the body that sits quietly now in our family room staring at the television without understanding.  The weighty responsibility of caregiving reminds me that while we are still able we must make the most of each moment.  We must embrace the opportunities when we can to share stories, to ask questions, to spend time with each other, and to cherish life while we can.  I am resolved...yes.  It is too late for tears.  It is time to smile about my mother's  life well-lived.

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.