Recovery

Yesterday, someone told me that I looked and even sounded different.
"Really?" I asked incredulously.
"Yes," my friend replied.  "It's like  you're lighter. You're facial expression has changed and your voice is bouncier."

I thought about it for a minute.  Had I been weighted down by my caregiving duties to the point that it had actually changed me; I who told others that the only way to care for our loved ones was to first care for ourselves; I who spoke publicly about how to nurture ourselves through stress-reducing activities and who fervently reminded others that they should be vigilant about their own mental state, had overlooked mine?

I retreated to my car and took a mental inventory.  I felt the same.  I was still caring for my mother albeit long distance.  I was still running to the nursing home to check on her, to visit, to make sure that the nurses were doing their job.  But there was something different.  That stress--that ENORMOUS responsibility had been lifted from my shoulders.  Over the past few weeks, Skip and I had managed to actually have a couple of date nights and even a spur-of-the-moment drive to get milkshakes. (Something that we considered reckless and wild.)

I love the sense of wild abandon I feel when I announce, "I'm going to run an errand." I don't have to check if it is okay with Skip that he has to stop doing whatever it is that he is doing to go into the family room and sit with Mom.  Suddenly those little things, the things we used to take for granted, the simple freedoms we had lost during the four years we cared for my mother in our home, are restored but now with a new-found appreciation.  Can I go to the grocery store? Yes...YES I CAN!  Can I sleep until 9 AM?  Yes.  Can I be gone until after dinner without worrying about a schedule or food preparation? Yes.  YES. YES!!!

Before you think me too jubilant, let me hastily remind the reader that my heart is still heavy as I worry about my mother every day when I awaken and before I fall asleep.  Being the control fanatic that I am it is extremely difficult to face the fact the my mother's well-being is in the hands of others now.  I dread each phone call hoping and praying that it isn't a nurse calling to tell me that my mother has fallen, is injured, isn't eating, has misbehaved, is sick, or has gone missing.

I think about my visits to see my mother. I am frightened.  Old memories flood into my consciousness...childhood memories of visiting my grandmother in that horrible nursing home. I was so fearful of the old people.  They reached out to me and touched me as I walked by--the wordless, wrinkled, wild-eyed or zombie-eyed strangers who followed me down the halls.  Here too they sit in the halls and await my approach. I avert my eyes when I walk into the building to see Mom, careful not to look into the blank and vacant faces of other patients.  I find my mother slumped on a bench and for a moment I only see a frail and tiny woman with deep wrinkles and wild hair. When I touch her shoulder she opens her eyes and smiles the smile she reserves for strangers. There is no recognition and my heart shatters into a million pieces.

I notice that her cheeks are sunken and her toothpick ankles do not look like they could support her.  It has only been a few days!  How could she have changed so much?!  Perhaps I didn't notice before.Suddenly I reach out to her wanting to hold this nearly helpless human and to protect her, to love her, to care for her.  I forget my fears as I stroke her head, her back and her arms.

Mom has three months to go before she is 100 years old.  I never thought that she would make it to 100 but now I am cheering for her.  "Please dear God, let her remain healthy and safe," I beseech.  Why do I pray for this milestone when just a few weeks ago I cried and carried on that this was no way to live, that she wouldn't have wanted to be this way?  Before...just a few weeks ago I cried over the unruly appearance, the lack of grooming. Now, I am amused by clothes that the nurses dress her in. They are clothes that don't belong to her.  I resign myself to the fact that she is wearing someone else's socks, that her hair is uncombed and that she shuffles around like all of the residents. Still, I sadden over her purple mottled skin that tells me her heart isn't pumping strongly enough to oxygenate her extremities.  I worry over each bruise.  I fret over her weight loss.  "It's out of my control," I remind myself.  Can others do it better (this caregiving) than I? 

Another few days go by.  I visit with heart in mouth until I see her sitting alone on a bench...the oldest resident, the ancient wizened face looks up and smiles that same sweet smile she has always smiled from the time I was too young to remember.  Only now it is not about anything in particular and maybe everything at once.  Maybe it isn't so bad after all.  Maybe she is okay.

I watch two old ladies follow each other from room to room weaving their way in and out of the doorways like a two-car choo-choo train.  They shuffle mindlessly nearly colliding with the man who comes out of one room and enters another.  There is perpetual motion and the nurses follow along guiding the patients out of the rooms.  "No Miss Emma, this isn't your room.  Mr. Smith, let's go this way," they patiently shift their trajectory to another doorway. I watch and observe them stopped at a wall like the battery-operated robot toys that move until there is an obstruction. They bump into it over and over until the nurse turns them once again.  I am fascinated by this and watch with a kind of sick curiosity no longer experiencing the shock (and yes, even a little revulsion).  I begin to find the humor in this.  I refer to this sad drama in more comforting terms and laugh at the antics.  One patient wanders from room to room picking up others' personal items and leaving them in other rooms.  It is now clear to me why my mother is now sitting in a garish pair of fuchsia and orange pants with yellow striped socks and a blue top none of which belong to her.  They were in her room and so they become hers for the moment. They were gifts from the shufflers, the choo-choo trains, the wanderers, the hunters and gatherers.

As I sit with Mom who is silent but awake on her bench, a man walks up to her and she looks at him smiling coquettishly.  He touches her knee and she signals for him to draw nearer.  The nurse tells me that she is going to kiss him if he comes closer.  He makes no move but then as I get up to leave, he quickly grabs my seat next to her and as I turn to say goodbye I see the two of them smiling at each other.  They are perhaps joined in their silence and somehow content with each other's company.  My need and desire for control evaporates in a bittersweet moment as the door closes and locks behind me.  My mother is safe for now.  She is cared for.  I am free to go home and make dinner for my waiting husband who deserves my full attention and an unburdened evening.

There is some sort of comfort in all of this.  My sadness is healthy.  There is symmetry in my emotions.  Obligation, stress, discomfort, worry are balanced with a sense of letting go, of relief, and a rediscovery of who I was before I was a caregiver. I see that this is the circle of life--my circle of life and I revel in my recovery.

Goodnight, Mom

I am awake.  I can't go back to sleep even though it is stll early morning.  All I can think about is what I have done.  I don't feel guilty about it but I feel sad and sorry.

Yesterday we received a call that a room was ready for my mother in a skilled nursing home.  We had planned on moving her later but the room was available a day early.  I wasn't ready yet but Mom was more lucid and able to move around, so we decided that there was no time like the present. Skip and I had agreed a month ago that it was best for Mom and for us.  Mom needed a place where there were no dangers.  Our home was an accident waiting to happen.  There were steps, stairs, and wires.  There were obstacles and distractions.  Mom was prone to fits of intense anger.  She was fearful  of moving, of standing up., of lying down.  She reacted in violent outbursts.  She would scream, punch and throw her body backwards, mindless of how she could cause herself (or others) harm.  The sedating drugs we sprinkled on her food helped a little but we worried that she would drop the food on the floor (which she often did) and our dog, Kira might eat the food and ingest the drugs.  I worried, I stressed, I watched.  When I left the room, I hurried back.  When I couldn't be with her, Skip had to stop what he was doing to watch, to assist, to do all of things I never, ever, EVER wanted him to do. We couldn't do any more than we had already done but when the decision was made, I questioned it.  I worried and cried.  Finally, resigned to the inevitable, I packed up a few things and loaded Mom into the car.  Mom didn't want to go.  We told her we were taking a drive but somehow she knew.

"No.  I don't want to go. Please," she begged as she turned away from the door.

All these months of mindless existence evaporated as she understood what was happening.  She turned to me with a panicked look in her eyes, "Let me...I wanna...please."  She couldn't put the words together, but I knew what she wanted to do.  She wanted to sit in her chair.  She wanted to close her eyes and nap quietly.  She wanted to be lifted gently when it was time to move to the kitchen for her dinner.  She wanted to hear the familiar words and sounds  that she only partially understood, 'It's time for dinner. It's time for bed. It's time to change your clothes.'

I couldn't look into her eyes. I knew I that my resolve would evaporate. "Maybe we should wait until tomorrow," I told Skip.

"No.  We need to do this now." My loving husband, my rock, my anchor reminded me of all of the reasons we had to follow through with the plan.  Four years of dedicated caregiving, four years of staying home...putting Mom first, deferring our own needs: trips, parties, nights out, social engagements,work, personal care, and unnecessary expenditures--we needed our lives back.  There was nothing more we could do for Mom.

We drove down our driveway and I knew that Mom would never again sit in our kitchen. She would never walk through the door or drive down this driveway again. I glanced back at Mom sitting silently in the back seat.  She looked small and vulnerable.  She was our almost 100 year-old child, our ancient baby. I smiled at her trying to mask my feelings.  Tears welled up in my eyes and I turned my head to focus on the road. The rain had stopped and the sun emerged from the clouds.  The Carolina sky sparkled its perfect blue in the large puddles that collected along the roads.

"What a pretty day!" I remarked, hoping that Mom would notice.  She remained silent and unseeing. I wondered, "What is she thinking right now?"  We drove out of the neighborhood thinking our own thoughts.  The car was heavy with silence, with sadness. Then, from the back seat a small voice spoke with a clarity we hadn't heard in many, many months.
"Where are we going?"

I wasn't prepared for this.  I searched for the words.  Then, I replied, "We're going somewhere you've been before." It was true.  She had been to the nursing home when she needed rehab after falling and breaking her clavicle.  Then I added, "You're going to see the nurses and doctors." I don't know if she heard me.  I know that she wouldn't have understood even if she had heard me.  Her eyes were already glazing over.  She fidgeted and fiddled with her sweater and then sat back motionless.  I thought that she might be falling asleep but her eyes remained open and again I found myself wondering if she knew something, if she understood more than I thought she did. Had part of her brain awakened? Fresh tears fell from my eyes and I struggled to regain my composure--my unemotional self.

When we arrived at the nursing home I rushed out of the car leaving Skip to help Mom. I wanted to meet with the admissions people, sign the paperwork, to complete the process and leave.  I needed to hold it together just for this little amount of time--to get through without falling apart.  I remembered how I felt when we put our dog down and how I tried and failed to hide my sadness--how I rushed off to cry alone.  I felt the same now.  Granted, we were simply putting my mother in a safer environment, but the thought that she might not flourish in this environment, and the knowledge that she would die here made me want to grab her and hold her...to take her home again...to erase my resolve.  In an irrational moment I wanted to turn around and walk back out the door.  I glanced back at the car and then turned with all of the emotional strength I could find. I had to show my brave face, my resignation.

"Hello.  I'm Jessica Bryan.  I'm here with my mother, Pauline."

The paperwork was completed.  My painted smile quivered when the admissions clerk asked if my mother had a living will.  I wanted to cry out, "My mother is nearly 100 years-old with an incurable illness.  She's in last stages of Alzheimer's.  There is no reason to keep her alive.  There is no quality of life!" Instead I shrugged and said that she probably had one somewhere, but for now I would make the decisions as her daughter--her Power of Attorney. I would do the humane things, the things that would be sensible when the time came.

Skip joined me after having escorted Mom to her room and carrying in her few belongings that I had packed.  I reminded myself that I had forgotten her comb and instantly felt remorse.  (Okay, so this is how it was going to be.  I would spend my time feeling remorse over stupid things. I would beat myself up because her hair might be unkempt for 24 hours until I could get back there!)

We walked to the Alzheimer's wing after we thanked the nice lady for processing the paperwork, the nurses for taking Mom's medications, the orderly who showed us how to release the door lock that kept the patients inside--locked away behind the doors, away from families and normal life. I walked into her room, a clean room with sparkling floors.  She sat alone, tiny, and old--so old.  She looked up and tried to smile bravely but I could see the fear and confusion in her eyes. I told her we were leaving now but would be back soon. Skip took my hand as we walked down the long halls filled with residents lining the corridors, gazing without seeing, sitting without interacting, speaking without understanding. I lowered my eyes  and listened to the sound of our footsteps on the stark floors and echoing against the institutional walls, gulping air and trying not to cry until I got to the car.

Last night as I fell asleep I thought of Mom.  She was surrounded by people--lots and lots of people.  Yet, she was alone.  I sent a prayer that she would be okay, that she would know I was thinking of her and most of all, that I loved her. "Goodnight Mom," I told her, knowing that she would never again  hear me say that as I tucked her into her own bed in her own room.  "Goodnight Mom," I repeated,  knowing that I would see her in a few hours, that I would care for her needs in a limited way, that I would show her my love as well as I could, that I would say words that made me feel better but would have little effect on her.  I was sad--oh so sad.  I mourned for my mother who little by little had slipped away.  I was too preoccupied to mourn for her while I was tired and frustrated in my caregiving role.  I was busy.  I was tired.  But now, in the quiet of the night, I listened to hear the familiar sounds of her breathing over the monitor.  There was nothing but silence.  I told myself over and over that this was the best decision, the right decision.  Now I would have time to remember the mother I loved, the mother I cared for, the mother whom I would visit without feeling exhausted and frazzled by my caregiving duties, the mother I would hug and love even though she couldn't return the emotions.  One more time, with tears beginning anew, I breathed the words to her empty room, hoping that somehow, across the miles she would hear me.  "Goodnight, Mom."

Why I'm Not Laughing

A friend saw me today and inquired as to why she hadn't seen any funny blogs from me lately.  I grimaced as I told her that there was nothing funny to write about.  My friend's sympathy was immediate.   I hated the fact that what I said evoked a sympathetic response.  Yes, my mother is going downhill quickly, and, yes, it is incredibly difficult for both my husband Skip and for me to deal with the changes, the outrageous anger, the screaming and the dangers that accompany her manic episodes.  However, I am seeing the light at the end of the tunnel and humor will soon creep back into my life.  We have been told by everyone--all of the nurses, CNAs, hospice workers, and social workers that Mom should be in a skilled nursing facility.  She is a danger to herself and to us.  So I set aside any guilt that I might have had surrounding placing her in a nursing home and began calling to see who could take her. We found a home that was recommended by another friend and began the paperwork.  There were forms to fill out...lots of forms. Navigating my way through the process was, and still is, a learn-as-you-go feat.  The most difficult part is leaving messages for people and then waiting for them to call back (usually when I am in the shower, walking out the door, or on the road without ability to make notes.)

So, what I am saying is this; I have spent 20 years observing my mother's slow descent into oblivion.  It began a a few cognitive slips that caused me to raise my eyebrows.  Then there were some memory issues that crept into conversations and again, I took note.  After Dad died it was apparent that Mom had a brain dysfunction that prompted me to take her for tests and that was when she was officially diagnosed.  As time slipped away Mom grew more and more confused, forgetful, and childlike.  Four years ago, when we took her into our home to care for her because she was no longer capable of living independently, I began my journey as caregiver in earnest.  But it was not without humor and love.  Always, there has been laughter, playfulness, and joking that cheers us. Always...always...always.  Until now.  The past six months have been unbearably difficult--a nightmare from which we do not awaken.  I have described things in other blogs or at least alluded to incidents.  They are daily, even hourly now.  Hospice was called in because, well, she's dying. (We just don't know when.)  Hospice prescribed medication to control her unfounded anger, her hysteria.  We tried different pills, different amounts, different ways to administer medication to no avail.  She is drugged, she can't speak, she can't hear, she is fearful of everything, and now she is completely dependent on two strangers (us) whom she thinks are trying to kill her every time we gently assist her by touching her.  She sits in wet diapers not allowing us near her to change her.  She punches, kicks and slaps me when I try to help her into her nightgown.  She flails about when we are on the stairs and I fear that one or more of us might take a tumble.

This leads me to my original point.  There is light at the end of the tunnel because with as bad as things are, I cannot see any reason to continue to try to care for her at home any longer.  She had a good run but I know that if she were cognizant she would tell me to put her somewhere so she could spare us any more heartache.  Oh...but there IS heartache.  It is the knowledge that my mother's last years are providing an indelible memory of the hiddeous nature of Alzheimer's, of the images of a broken woman reduced to immodesty, all dignity removed by the situation of having her diapers changed, of being fed, of being bathed, dressed and toileted.

The thing is, before I celebrate my newfound freedom, I am already beginning to wonder how it will feel having our home back.  How will I adjust to my new role as non-caregiver?  I know that when she enters the nursing home she will never return to us.  Her last time at the kitchen counter, the last tissue I will remove from her breakfast dishes and throw in the trash, the last diaper I dispose of, the last time we change the sheets on her bed--it will all hit me and I know that for a while I will feel like something has been torn out of me.

I sit here evaluating.  Is it true that the stress and daily turmoil has become so much a part of me that I will miss it when it is gone?  I remind myself that just like any other form of grieving, I must take time to allow for the adjustment, the tears and the loss. I take a deep breath and go to bed wondering if tomorrow will be the day that all of the paperwork is ready, that Mom is admitted to her new
home--her last home before she is called to her eternal home.  I said my 'Good-byes' many years ago, but now, with this final decision I want to hold her for just one more minute, one more day because when she leaves us she takes a lifetime with her, a bond, a mother-daughter relationship, a presence.  I know that I will live the next few weeks on tenterhooks waiting for that phone call.  It will come sooner rather than later.  It will be from her nursing home, some kind soul will deliver the news and I will cry regardless of how I have prepared myself, how I have hated these past few months.  A loving child always cries.  We cry for our mothers who used to be, for the child within us, and for our own mortality.  So today, if you ask me why I am not laughing, you will know.

Manaleega

My mother has been driving me crazy saying non-sensical things that I can't understand and then getting angry at me when I don't respond.  The other day she yelled at me (just because I said, "Mom, I can't help you because I can't understand you."  Then I asked her to point at what she wanted and she got frustrated and threw her arms up in the air like I was an idiot.  She stormed off yelling that I was mean and mumbled something about "Just you wait...mumble, mumble...you're gonna get yours!" Implying that someone was going to rub me out or at least do some act of violence.)

Mom is always threatening violence these days.  If we gently take her hand to assist her getting up she yells, "Take your hands off me!" Then she yells "HELP, HELP!  Momma...they're killing me.  Help me Momma--M-O-M-M-A!!!!"  (Yup; THAT comes out loud and clear.)

I feel like I am living in a loony bin. (Have I said this before?)  So, when Mom walked into the kitchen and pointed at the counter saying "Manaleega," you can imagine my confusion.  I shrugged.  "What's manaleega?" I asked.  Mom looked at me with a blank expression.  "WHAT'S MANALEEGA?" I asked loudly thinking that she didn't hear me.  Still, she looked at me blankly.  Finally I screamed, "Manaleega...what is it?"

"Yes," she answered.

I could feel my veins popping out on my temples.  "NO...not 'yes'...I mean, I don't know what Manaleega is!"

Mom looked at me like I was speaking Latin. "Neither do I," she answered.

That's how our communication is these days.  There are moments, snippets of intelligible speech and then it lapses into gibberish.  One day, Mom sought me out and asked, "Can I sit here?" pointing at her usual perch next to me.

"Of course," I answered.

Then Mom started talking gibberish and when I answered 'yes' to something that evidently I wasn't supposed to answer 'yes' to, she got angry and stood up grabbed her walker
and stormed out of the room saying very clearly, "HRMPH!  Some companion you are!!!"

I'm getting used to this abuse, but still, every once in a while I react inappropriately.  I utter things under my breath.  Okay, I'll admit it.  I am not an angel.  When Mom told me "Go to Hell!" I uttered quietly, "I'm already there!"  It's childish but somehow satisfying.  Look, even if Mom didn't have Alzheimer's I would get angry every once in a while.  So, there is not any guilt about my reactions.  I'm okay with the fact that I find this person objectionable.  She screams and demands, shouts and insists.  She curses, and spews bile at us while we perform our caregiving duties trying to protect her, feed her, keep her clothed and clean.  I hope that somehow, somewhere inside that dying brain there is knowledge that we love the woman she was and made a commitment to care for her.

Sometimes...just sometimes though, we feel like pinning a note on her shirt saying 'Please take me,' and leaving her at a local fire station.

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!