Into 2019

We end each year looking forward to new beginnings, choosing to make changes, improvements, and goals. We sometimes try to forget our mistakes and ask forgiveness of ourselves and others. The moment the clock chimes midnight, we sing and celebrate to herald in the new beginnings. I know already what 2019 will bring without being a prophet, without a crystal ball, and without seeing a fortune teller. In my life, in my house every day is the same. 2018 went out the same way 2019 came in. There was nothing more than a whimper. My mother, for whom we care, slept through the toasts, the celebrations and the partying of others. She slept through the proclamations that this next year would be better. She snored softly as revelers looked forward to good health and good fortune. When she awoke she called to unseen and long dead relatives. She was confused and babbling as we entered her room. She couldn't communicate nor could she understand the simple words we used to tell her to go to sleep. It was still too early. On New Year's Day, she walked in a fog, slept, ate without knowing what she consumed, and sat in her chair gazing at nothing. By evening she was angry and stubborn, just like every night. We gave her medication to calm her, to quiet her. It didn't work and once more she fought us as we attempted to help her to her room, to help her undress and ready herself for fitful sleep. She railed against us, cursed at us, threatened to kill us. She slammed her fists down and screamed as loudly as she could using every bit of air in her lungs. This is what the new year brings. This is the final stage of Alzheimer's disease.

Still, there is hope that this year will bring solutions, cures, pills, medical breakthroughs. It will be too late for my mother but for others...maybe, just maybe there will be something that will help them. There is hope that soon, my mother's journey will be over and this nightmare that locks her unwillingly into this reality releases her. Does that sound harsh? Does it sound unfeeling that I would wish that my mother's soul be released? I defend my attitude as I stand witness to this obscenity we call Alzheimer's disease, helpless to do anything but keep her comfortable and in absence of that, to keep her drugged. There is nothing to be done but wait, service her needs, endure the pain. For those who know nothing of caring for someone such as this, I counsel that it happens to too many. Everyone knows someone. It is happening more and more and unless we find a cause, or a cure, it WILL affect almost everyone.

So...2019: I begin with a promise to do my utmost to be compassionate, loving, and caring, already knowing that I will fail miserably. My personal goals to care for myself, to get more exercise, to eat right, to share more time with loved ones and dear friends will not be met. Even though it seems like a bleak future, there is optimism that I will find great strength and joy somehow and somewhere. This I know--that each and every year I look back and evaluate what I have learned and how I have grown; and among the ups and downs there is a sense of accomplishment. I cannot see too far forward--it's murky what will happen and when it will happen, but seeing the past is crystal clear. Instead of leaving it behind me and making resolutions I will build upon everything I have learned and how I am growing with each new challenge. This is something to look forward to in 2019.

TRAPPED!

I am still shaking from my ordeal, but at last I have regained my composure and can write about this.  My worst nightmare was realized this morning as I went in to help Mom get up and get dressed.  I walked into a big puddle on the floor as I greeted Mom.  Once again she had removed her diapers during the night and had proceeded to pee on the floor.  That, in and of itself would have been bad enough; but let me back up for a moment to explain:

Skip is out of town.  He left this morning to do some work in South Carolina.  I was awakened by his alarm going off at 5:00 AM.  As he quietly got dressed I remained awake.  When he whispered goodbye to me I sat up and looked at the clock.  5:30 AM!  Oh Joy!  I was awake and couldn't go back to sleep.  I walked out of the bedroom to get a cup of coffee and sit in the family room enjoying the quiet.  It was only for a moment.  Already, Mom was stirring in her room. I listened to her moving items around on her dresser.  It was dark outside and out of principle I would not go get Mom until the sun was up.  She would have to wait.  At least now, with the lock on her door I didn't have to worry that she might become impatient and walk out of her room to try to descend the stairs and go to breakfast, as she had done before.  We had resisted locking her in for a few years, but now, with her worsened condition of late stages Alzheimer's it was necessary for her own safety to keep her contained.

I continued to sip my coffee luxuriating in the the moment of relative quiet.  The dog was still asleep, Skip was gone so the morning news wasn't on.  Mom seemed to have sat back down and was fidgeting with the sheets so all I heard from upstairs coming over the monitor was the sound of fabric being folded. (It is one of Mom's favorite activities--folding her sheets and blanket.)

The clock ticked the minutes away and as I played a few puzzle games on my tablet, checked my email, social media pages, and calendar, I also watched the sunrise.  It promised to be a pleasant morning.  I reminded myself of the early morning call I was making to two new agents who needed some advice before beginning to work with clients.  I wanted to allow enough time to get my mother dressed, fed and "settled" before accessing my conference call. I decided at 7 AM that I would go up to get Mom.  That takes me back to where I started.

I opened the door and entered.   Mom was eager to get dressed and we did so quickly.  I scouted around to find where she had hidden her diapers.  They were in her walker and as I removed them I remembered to spray the interior storage compartment with Lysol. I was determined to not let anything bother me today.  Then I walked her to the door.  I moved the wet mop I had used to clean her floor back out of the way, held the wet diaper in the plastic bag gagging just a little over the foul odor, and pushed on the door lever.  The door didn't open!  I pushed harder and then realized that the lock was still engaged from the outside.  There was no way to open the door.  We were locked in.  I began to panic but then thought that I could find something to open the door through the small hole I could access to disengage the lock.  Then I remembered that this was the only door in the house that had a one-way lock with no hole on the other side.  My heart sank.  There was no way out.  Skip was gone.  Our dog, Kira was not the kind of 'hero' dog to come to our rescue.  Our son was no longer living in the apartment, having left for Colorado.  His girlfriend, Christina was now the only occupant and she was still asleep.  Nevertheless I began knocking on the door and yelling for her.  There was no response. I continued knocking and yelling.  Now Mom joined in as well.  It must have been fun for her because she was really getting into it!
"Help!"  she yelled with gusto.
"Christina!" I bellowed.  "Save me!"
The house remained quiet.  I looked around wildly hoping that I could find some means to help me escape.  The smell was nauseating and I envisioned dying of asphyxiation. (Could the smell of Old Lady Pee kill me?) "HELP!" I shouted in earnest.  "HELP, HELP, HELLLLLLLLLLLLPPPPP!"
I was now panicking and pounded on the door.  It shook the walls as I continued to pound and scream.  I stopped and listened assuring myself that I would hear the sounds of footsteps on the other side of the door coming to my aid.  Sadly, the house remained silent.  I rested a moment and then began my pounding and shouting again.My level of panic rose to new heights. Maybe Christina was already up and out the door on her way to work, possibly running an errand first which would explain an early departure. What if she didn't get home until late tonight.  I tried to remember if she had mentioned anything to me about being gone for the weekend. 

"Oh no, oh no!" I cried to myself.  "I could be stuck here for two days!"  I wondered f Skip would call when he arrived in South Carolina.  If I didn't answer would he assume that I was taking our dog out and not call back?  It might take him until the evening to call me again as was often the case when he was working.  When would he begin to worry?  Would his concern cause him to take action?  What would he do?  Who would he call next to check on me?  Whose phone number did he have on his phone?  All of these thoughts were running through my brain at lightening speed knowing that Skip was the king of not memorizing anyone's phone numbers and even if he had a person to call, how would they get into the house?  Now the reality of the impossible situation sank in.  Mom and I were unlikely roommates for the duration until someone returned home and discovered that I wasn't there.  By then, I might be lying unconscious on the floor (from the aforementioned asphyxiation or from an stress produced embolism, or from a conniption fit!)  Whimpering helplessly I collapsed on a chair and looked at my mother who was pacing like a caged animal. It was only a matter of minutes before she would realize that she was not being fed her breakfast; and for those who know my mother or who have read previous blog posts they will realize that nothing...NOTHING stands in the way her food.  She has an appetite of a hungry bear and a disposition to accompany that. 

"Why can't we go?" Mom asked.
"The door is locked. Just go sit down on your bed."
Mom nodded and proceeded to pace in circles.
"Why can't we go?" she asked again.
"The door is locked." I repeated.
"Oh."  She paced in a circle then asked one more time, "Why can't we go?"
"AURGH!  Christina!!!" I shouted desperately.  I began pounding on the wall.  "CHRISTINA...HELP ME, HELP ME...HELLLLLPPPPPP!"

The minutes ticked away.  I thought of people trapped in a building collapse, an earthquake, a mine disaster, an avalanche.  I thought of their futile cries for help as rescue teams searched for them.  I thought of them running out of oxygen and becoming weaker and weaker until their cries became inaudible.  My hand hurt from pounding.  My throat was scratchy from my screaming.  My voice was hoarse.  My rescuers would never find me.

My imagination was now running wild and still, my will to survive kept me pounding and yelling.  Hours passed (or at least it seemed that way to me.)  I knew that there wasn't much time left. (Okay...perhaps a bit dramatic of me but I was thinking that I was going to miss my conference call!) I was certain of it now.  I gave one last pound on the door, yelling my head off.  Suddenly there was a small voice on the other side of the door.  Oh miracle of miracles!
"Jessica?  Is that you?" 
"OH MY GOD...YES!  It's me.  Let me out.  I'm locked in!"
Christina opened the door and I practically fell on top of her scrambling to get some fresh air.  I know that I looked like a mad woman as I hastened to explain, between gasps what had happened.  Christina told me that she hadn't heard a thing until just then when she thought that she heard construction noise from the home that is being built next door.  Then as she awakened she thought that she heard a voice and thought that it didn't sound like construction workers.  That's when she decided to go check and see where the noise was coming from. Oh how fortunate.  I was so happy to be free that I almost forgot to get Mom. As an afterthought I went back to extract her from her room.  Then I gave one long blast of Lysol room deodorizer, sprayed the sheets with Fabreze extra strength leaving the room in a cloud of chemical neutralizers and went downstairs. 

Sadly, there will be no news reporters, no book deals, no survivor stories.  In fact, the entire incident would go completely unnoticed if not for this account. Christina was laughing so hard I knew that she would never support my claims of a near death experience. Alas, I stood on the precipice of disaster and no one even noticed.  When at last I stumbled to the phone to call Skip to report that I was safe, he hadn't even missed me.  He was still driving and was more concerned about telling me that he had received a speeding ticket.
"A speeding ticket?!  Oh no.  I am so sorry!" I told him, almost forgetting about my ordeal. My crisis was overshadowed. 

Darn it!  How could he trump me with a speeding ticket?!  Life is just soooo unfair.
 

EXHAUSTIPATED

A nod to a fellow writer, Irene Francis Olson who shared a new word she learned after attending an Alzheimer's conference: 'EXHAUSTIPATED'.  The meaning: (as a caregiver to someone with dementia) When you are too tired to give a crap!  I laughed out loud when I read that.  It was so true.  Caregivers are continuously exhausted.  As far as how constipated they might be; well...I can't speak to that.  Suffice it to say, we don't have much time alone for personal care. Of course the double entendre didn't escape me.  I don't seem to care as much any more.  I am really, really tired.  But still I muscle through the days and look for the things I can laugh about.  It's really all we have left--humor.  Beneath it all there is, of course, love. The love is for the woman I used to know, and for the poor soul locked within the withering body and mind of the person who lives with us.

The challenging moments throughout the day create singular events that weave an interesting fabric.  It's...uh...shall I say, colorful?! They offer glimpses into how we do or do not cope depending upon our own current mental state.  When we lack sleep, Skip and I are less patient, more reactionary, and less likely to find the humor in something my mother says or does. Allow me to illustrate with a few examples:

First of all, I think that it might be noteworthy to share that our dog has put in her notice that if things don't change she might consider leaving home; this, over the fact that my mother has now taken a liking to Kira's dog bones.  As my mother scans the floor for fallen objects she picks up the rawhide bones and places them on her walker.  Evidently she has decided that they might make good snacks and so we have now caught Mom nibbling on the rawhide bones that Kira leaves around the family room. Good grief!  Now we have one more thing to supervise.  In the unending string of surprises and departures from normal, we have had to hide all edible and even inedible items that might be construed as potential food sources.  Oh it's not that we are starving Mom.  On the contrary; she is eating more now than ever...VORACIOUSLY!  She treats each meal as though it were her last with lip smacking, slurps, gulps, and industrious shoveling of every crumb.  I have even caught her licking the plate and her placemat.  If we leave the kitchen to escape the noise and bad manners, we run the risk of Mom helping herself to any food that is left out.  If left unattended Mom overeats.  She doesn't remember that she has eaten nor does she employ an inner switch that reduces her appetite. After overeating, Mom suffers from indigestion and we sometimes deal with the occasional eruptions of Mount Etna as Mom spews forth in vomitous explosions.  Our carpet has become one big stain. 

Moving on with my litany of complaints, Mom has taken to leaving her dirty tissues in various inappropriate locations.  I opened the cabinet door to extract a plate for lunch and found a used tissue sitting atop a clean dish.  I have found them in drawers, on top of dish towels, tucked into magazines and books, and always...ALWAYS on the countertop where I cook and prepare food.  Being the fussy germ-a-phobe that I am, I should own stock in Clorox Wipes. I certainly use enough of them to keep them in business.

All of this is enough justification for me to use a word such as exhaustipated, what with Skip and I having to clean up after her, do several loads of laundry each day, clean the floors, the carpet, cook, unclog the toilets, change her diapers, and so on.  But the thing that makes me cringe the most is how my mother's attitude has changed.  She is downright combative when we confront her with her misdeeds. 

Today, I caught Skip telling Mom that leaving her used tissue on the kitchen counter was as bad as pooping on the counter. (He does that for shock value but the result is often a fiery exchange.) Mom took great umbrage as she told him, "You're a disgusting person! 
I would never do that!"  Skip argued that she left her used, wet tissues on the counter all the time.  Of course it was futile to tell her.  Mom insisted that she NEVER did that.  Then, as the argument continued and escalated, Mom began to threaten him saying that she was going to kill him.  (Probably by throwing a wet tissue at him.)  Almost everything we say to Mom these days is fodder for dispute.

"Hey Mom, it's time for bed," we announce.
"No it's not."
"Yes it is."
"Ah baloney!" she huffs in response.  "I'll decide when I want to go to bed."

We have tried to walk away from engaging in any disputes but sometimes our inner child comes out.  That's when we do things like we did this evening. "Okay.  If you don't want to go to bed we'll just leave you in here by yourself."  Then we turned off the lights in the family room and left her sitting in the dark.  (We stayed nearby to observe her.)  After brooding for a while she forgot the argument and was quite ready to toddle off to bed. It doesn't always work like that though.  There was one night that was so bad when I was trying to get her ready for bed that I finally said, "Mom, I am trying to help you.  I am your daughter and I care for you.  But if you continue to act mean and angry..." (she was shoving me and calling me names, telling me that I was terrible to take her clothes off of her and how if her sister were here she's take care of me) "then I will just leave you here and let you stay dressed.  You can put yourself to bed."  Then I turned off the lights and walked out.  She began screaming all kinds of horrible things.  She threw a complete temper tantrum.  It was awful and yet somehow laughable.  I was deeply shaken but was also somewhat amused by the depths to which her behavior had sunk.  You see, Mom was always a sweet woman.  She was happy and loving.  I very seldom saw her cross about anything. She was sensitive and caring. Her nature was to be hurt by others' misspoken comments rather than to hurt others.  These days were so different, with behaviors so unexpected, so unusual, so bizarre.  Living with Mom is rather like riding through a carnival fun house.  There is always a little apprehension over what we might encounter around each turn.  I awaken each morning with dread, my stomach doing flip flops. I wonder what the day will bring.  What new assault will she fire at us? What misguided accusation will she level?  Will there be another mess to clean up in her room? (Most certainly!)  Will she allow me to bathe her? (Probably not without a fight.)  Will she balk about sitting on the chair lift, argue that I am trying to kill her as I take off her nightgown, grab her socks and hide them in her walker as I turn to throw away the wet diapers? Will she remove her pants that I have just put on her, try to put her nightgown back on or pull at the sheets and covers in an attempt to wrap herself up?  She seems to have a million hands and the strength of twenty weight lifters.  I can't subdue her and I can't deal with her but still I must.  I am...oh yes, I am most definitely EXHAUSTIPATED!

'Naked and Angry' Meets 'Alert and Afraid'

I don't mean to scare any of you with my stories about Mom.  She is in advanced stages of Alzheimer's and it has been a long time in coming. We had a chance to prepare, and many years of good memories, laughter and mutual moments of enjoyment knowing that eventually things would change.  At some point we knew that the symptoms of advanced Alzheimer's would be unpleasant. Now that it is here, it's...um...well...there's no sugar-coating it; it has become very challenging and difficult! Mom is apt to experience mood-swings without warning, and while we have medication to help her with her agitation, it doesn't work well and we are witnessing an increasing number of bouts with an angry aggressive woman who is stubborn, argumentative and sometimes even exhibiting violent outbursts.  We are learning how to handle these events as well as we can, but we're not perfect and do not always react as well as we should.  So, for example, the other day when my mother  lost bladder control, soaked through her adult diapers, and was sitting on an unprotected upholstered chair, I asked her to stand up and move to the towel-covered chair that we assigned to her while I went to get her a fresh diaper and change of pants.  (It is her chair!  She knows that.  But she doesn't like having a towel on it and therefore sits on other chairs.)  Mom balked and told me in a nasty tone, "I can sit wherever I like!"

I told her that she had wet herself and was now wetting the chair.  I don't know why I said that.  She was only focused on the fact that I was telling her to move and didn't care what the reason might be.  I asked her nicely once again.  She gave me a pouty look and then turned away refusing to discuss further.  I reached over and grabbed both of her hands to help her get up off of the chair.  That's when Mom went off the deep end, (Think David Banner turned into the Incredible Hulk) shouting at me and telling me to leave her alone.  "Don't touch me," she yelled pulling her hands away and pounding her fists on the counter.

Again, I explained that she had to move and she said angrily, "You can't tell me what to do!"  ARGH!!!  I stormed out of the room. I was seething and wondering where I could find a stick of dynamite to blast her off the chair. (Would that be considered Elder Abuse?)  I began to laugh at myself as I envisioned something.  Let me explain; I have always been a fan of the silver screen and found that seeing some of life's more difficult moments as movie and cartoon characters makes it somehow tolerable. This time I chose Wile E. Coyote and Roadrunner. (For the record, I saw myself as Wile E. Coyote with the dynamite plunger in hand.)  As usual, I found a reason to turn my frustration into something funny.

Dealing with Mom's anger is an everyday occurrence.  We have gotten used to her negativity, her anger and her mood swings.  She goes from stubborn refusal to do what we ask to laughing and cooperative within minutes.  What we are not used to, and what consistently surprises us, is her new affinity for nudity.  At any given time, Mom will whip off her clothes  and present herself to the world naked and unadorned.  It is horrifying to look away for a minute only to find that she has removed her clothes when I look back in her direction.  The other day, sitting right next to her, I was working on my laptop.  I looked over and noticed that Mom had fallen asleep.  I seized the moment to check a website and focused on the screen.  No more than 30 seconds later, Skip walked into the room and bellowed, "Mom!  What are you doing?!"  I looked up to see that she had removed her blouse and was beginning to pull off her pants.  "Stop!" He commanded.  Mom glowered angrily and narrowed her eyes menacingly as I reached over to help her put her blouse back on.

"OW!" She yelled as I pulled the top back over her head. (I hadn't done anything to hurt her...Honest!)  I recoiled wondering if this was going to escalate into a violent outburst.  My sweet mild-tempered little mother was now like Stripe in the movie Gremlins.  I was experiencing a fearful moment trying to figure out how to diffuse Mom's anger before she began running amok.  Thankfully, the moment passed.  I breathed a sigh of relief.  She transformed into her old self somewhat like Dr. Jekyll after being Mr. Hyde.

The other day, I heard a woman telling everyone that her 10 month old baby was now walking and I reminded her that when babies become toddlers, mommies grow eyes in the back of their heads.  Well, here's another warning.  When we become caregivers we once again have to hone in on our sensory skills.  Listen for the slightest sound, watch vigilantly, and most of all, never, ever let your guard down.  Stay alert, and afraid...VERY afraid!