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.

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!

Hurricane Madness or Gone With the Wind

There was a hurricane a few days ago that became a tropical storm by the time it blew through our area.  However, we had straight line winds that downed trees and left huge areas without power. 

"Are you okay?" friends texted.

"Nope!" I answered truthfully.  Frankly, if not for my mother we would've been fine.  A little thing like a power outage is merely an inconvenience unless one has a 99 year-old mother with Alzheimer's to contend with.  So, here was the scenario:  Without power we had no lights and Mom couldn't see.  She was disoriented.  We hurried to plug in the generator to run our sump pump so there would be no basement flooding.  We got out lanterns and flashlights.  We took one of the lanterns to Mom's bedroom because all of the night lights were plug-ins and there was no electricity to power them.  We had no monitors, no safety alarms, and no camera for her room.  Wait a minute...WE HAD NO POWER--HENCE NO CHAIR LIFT TO HER ROOM!!!  Together Skip and I tried to get Mom up the stairs with her fighting us all the way.

"Will someone get this man off of me, DAMMIT!!!" she yelled angrily.

"C'mon Mom," I coaxed.  "This man happens to be my husband, Skip.  I am your daughter and we are trying to help you get to bed."

Mom calmed down enough to allow Skip to assist her up the stairs with her groaning every minute of the way.  She was certain that we were both trying to kill her. 

Once I got her changed and tucked into bed I left the battery-powered lantern on for her to find her way to the bathroom in the middle of the night should she feel the need.  Why I bothered, I don't know, since the only need Mom ever has is to tear her nightgown off, take her diapers off and proceed to wet the bed.  Sometime during the night, the lantern battery died and THAT'S when Mom decided to awaken and walk around.  We, of course didn't know, because there was no monitor to awaken us by her motion.  She stumbled around, knocking things over and finally crawling back to bed.  I can only imagine what went on up there.

In the morning when I went to get Mom she was sitting on her bed looking like the hurricane had swept into her room overnight. The electronic monitor was lying on its side on the floor.  The lamp was off the table and the table was swept clean of all of its items. Her nightgown was off and tossed on the ground.  Her covers were strewn and a towel was wrapped over her otherwise naked body.  She looked like a scene from Gone With the Wind (um...literally) as her room was laid to ruin and the only things remaining were upended.  I assessed the situation and quickly discovered that while we were using the sump pump in the basement, we could have used it upstairs as well to alleviate the flood that Mom created on her mattress.  The room smelled like a barnyard, everything was soaked through and through, and I knew that there would be no flood insurance to cover this disaster.  We had no hot water (having tankless water heaters that require power to turn on.)  Mom had been lying in urine and obviously found that rolling around her wet bed was fun because even her hair smelled like Eau de Pee.  There was no bathing her because the water was too cold.  According to her screams of protest, I was trying to contribute to her demise by even thinking of cleaning her."It's FREEZING!  Stop it right now.  You're killing me.  HELP!  POLICE!!!"

"Okay, okay.  I won't shampoo your hair or wash your bottom.  Fine.  Let's just get you dressed." Mom shuffled her clothed bottom onto the wet bed and sat down before I could get her to stop. "NOOOOO!"  It was too late.  Her clean pants now wore a nasty wet spot that was sure to smell.

Once Mom was dressed we needed to get her to navigate her way down the stairs.  Between the two of us, Skip and I managed to take her down one slooooooow step at a time.  Explaining to her that there was no power and that we had no way of using the chair lift was like shouting in the wind. She couldn't hear or process our words.  Once downstairs, Mom made a beeline for her place at the counter to have breakfast; only breakfast was not as usual.  We had no way of heating water for tea and no way of toasting her bagel.  Mom didn't complain but seemed unsettled.  We gave her coffee since we ran a wire from the small generator to the coffee pot. Mom complained, "This is bitter!"

"Sorry Mom.  It's all we've got," Skip told her.  Then he explained about the hurricane, the power outage, etc. for the 10th time that morning.  Mom ignored him and went back to eating her piece of cold bread with cold cream cheese and cold strawberry preserves.  She grimaced and scowled while I secretly wished I could just go to a hotel somewhere far away and let Skip, the dog, and my mother fend for themselves.  (Okay...not fair to Skip...or the dog.)  Truth be told, my dark thoughts were not fair to Mom either. It wasn't her fault that she had Alzheimer's.  It wasn't her fault she was old, incapable of understanding why she had to forego hot tea and toast in the morning, why we had wires running down the hallway making it unsafe for her to cruise around and around with her walker aimlessly moving without thoughts or understanding.

Skip plugged the charger into the phone and then into the generator.  We were back online!  He checked the power outages in the area and reported grimly that it was widespread.  This was a bad one.  There was no hope that we would see power restored anytime soon.  Our sump pump was still working hard to get rid of all of the water seeping in and we knew that we would have the generator working overtime downstairs so being prudent with its use for refrigeration, charging batteries and making coffee was important.  

By the third day without power we were getting pretty proficient 'roughing it' in our home.  However, Mom gave us quite a bad time being walked up and down the stairs without use of the chair lift. Her patience had dwindled to complete refusal to move. She was terrified and frozen stiff to one spot halfway up the stairs the night before.  No matter what we did, how we talked to her, how we tried to reassure her she was bent on flinging herself backwards down the stairs.  When we physically pushed her to keep moving, she screamed bloody murder and at the top step, flopped down on the floor crying hysterically until we bodily lifted her and carried her to her room. Oh!  The commotion as she pushed and cried.  (I mused that perhaps we should just leave her on the floor, open the windows and let the residual  winds carry her away.)  

In the morning, when I went into the kitchen to start coffee I found out there was no water!  Our community water tower was dry.  (We later found out that without power, the sensor to signal water levels was not operating, so we had drained ourselves of all water.  Just about that time, Mom decided to go to the bathroom.  (AND I DON'T MEAN TO GO PEE!) There was no way to flush.  ARGH!  I was now beginning to panic.  I yelled for Skip to call the water emergency line and tell them that this was a major emergency.  I guess that his explanation and tone of voice was enough to get someone out here ASAP.  While we awaited the solution to the problem I suddenly began smiling and feeling an unexpected calm spread throughout my mind and body.  Being an ex-Girl Scout, I have lived a lifetime by their motto 'Be Prepared'.  I was prepared.  While madness might have prevailed, I was still sane enough to remember that storm preparedness included an ample supply of wine.  It was 11:00 AM and frankly I was ready with my Cork puller and a wine glass. While the power was out, nothing was working, and things were going from bad to worse...NO PROBLEM!  My coping mechanisms were thankfully still fully functional.

'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!