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!

Blank Screens and Striptease Sundays

 

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

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

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

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

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

"Mom?  Can you answer me please?"

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

(No answer.  Not even a twitch.)

I could feel the impatience welling up inside.

"Mom!  MOM!  MOM!  M-O-M!!!!"

Still nothing.

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

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

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

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

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

"It's okay," she answered without enthusiasm

.

"What's it about?"

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

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

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

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

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

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

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

"It's too hot!  Stop it!!!"

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

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

"I don't have to."

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

"Why not?" 

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

Hallucinations

I have witnessed my mother's hallucinations over a period of time but they are increasing to the point of being alarming, sad, disconcerting and yet, absolutely hilarious.  Last night at around 1 AM she shouted out several "Hellos".  I ran into her room to see what was going on.  Evidently she was hosting a party in her room but when I walked in she wasn't clear who was in attendance.  A few days ago she began talking to someone who supposedly gave her something to taste.  She was chewing on the imaginary tidbit saying, "Mmm.  It's so sweet!"  Today she walked into the kitchen and began talking to someone who wasn't there but refused to tell me who it was.  (Does she have a secret pal?)

This evening, Mom walked to the back door, opened it and shouted out to the empty screened porch.  "There's a light on in the kitchen and no one is in there.  Someone should turn it off."  Then she stood at the door for a moment and repeated her message.  At this point I decided to ask her who she was talking to.
"Those people out there," she replied.
"What people?" I asked.
"Them," she told me pointing at an empty porch.  "That whole gang out there."
"Okay," I said.  "So you see a whole gang of people?"
"Yes, she insisted.
Now, to be clear, I lecture others about how we shouldn't correct those with dementia.  We should enter their world instead of trying to pull them into our world. Normally I do that too.  It is crazy and totally counter-intuitive for me.  My responsible and logical self wants to point out the errors in my mother's thinking and perception but  I overcome my strong desire to be the one in control and play along...usually.  Today, was not that day.  It was the end of the day.  I had spent the entire day dealing with stressful things.  My brother was in the hospital; a brother who also has Alzheimer's and who is living out of state without a family member to help with medical decisions.  I was also dealing with a few caregiver issues that arose from a couple of the caregiver support groups. I was trying to help or find help.  In addition, my Mother-in-law on the other side of the country was injured and in acute pain. Both my husband and I were in contact with his sister, his mother and trying to assist long distance.  I will avoid listing all of the other things that were of concern other than the approaching hurricane that was threatening our area and for which we were preparing just in case it changed course and blew this way.

So, to get back to Mom's hallucination; well, I guess I was not feeling mentally equipped to handle it as well as I should have.  Instead of telling her to invite everyone inside I asked her what the people to whom she spoke looked like.  She peered intently.  Then, shaking her head she replied that she couldn't describe them.  "There are too many people out there.  They just look like a group of people."
"Yes, but can you describe them?  Are they men? Are they women?  What color is their hair?"
"Oh, you know," she answered.  "I can't tell you everything."
"Well show me one person," I insisted.
She walked out and pointed to an empty chair.  "There," she told me.  "Right there.  See?  That woman right there."
"What color is that woman's hair?"
"Green."
I looked at the empty green chair.  "Touch her," I commanded. Mom obediently touched the chair.  "So are you touching a person?" I continued.
"Yes.  Of course I am."
"Grab her hand and hold it."
"I can't," she replied.  "She just got up."
Still I couldn't let it go.  "Show me someone else," I pushed on.
"There," she pointed.  "That man over there."
I shook my head and said, "Okay.  Well let's go inside now."  I resigned myself to the fact that Mom was not going to admit that there was no one there.   

It had been that kind of day.  Mom had begun the day angry because she was sitting and waiting for someone to come get her and without calling out to us, I simply went up to help her at the usual waking time.  I found her standing in the middle of her room, naked and trying to wrap herself in a blanket.  She was tripping over it and had it stuck under the wheels of her walker.  I asked her what she was doing and why she had taken her nightgown off.  She replied that she wanted to put her clothes on but someone had to help her and she was waiting for them to come.  I reminded her that I was that 'someone.' Getting her dressed was an ordeal because she couldn't perform even the most simple tasks and I had to assist with every single thing.  (It was a new low.)

All day long, Mom walked around and around aimlessly.  When I tried engaging her in conversation her aphasia wouldn't allow for discernible conversation or answers. But this...this massive hallucination was more than I could bare.  I felt myself shaking inside.  My stomach was knotted. I tried to calm myself, to count to ten, to do some deep breathing but Mom was pacing again and finally I asked her what she was doing.  She couldn't answer.  When she sat down in the place that I usually sit, I asked her why she was sitting there and she gave a muddled response that was unintelligible.  She glared at me when I tried to provide some assistance.  Something was bothering her but she couldn't express herself.  There were two more incidents that required answers she couldn't provide.  Once more she was on the move and I asked where she was going.  She grew angry and petulant.
"I'm going to bed!" she scowled angrily.
"You can't.  It's not time."
"Well I want to," she yelled at me.  (I had pushed her over the edge.)
"Why?"
"Because I am tired of you asking me questions!"  (Hmmm...even though she had dementia and aphasia she managed to express how angry she was.  Yup!  I got the message loud and clear.)
Now it was my turn.  I'm not proud of these moments, but I lost my temper.  I told her, "Okay, go to bed...because I don't want to see your snarky expression anymore."  I stormed over to the door to open it to her room. I took her upstairs. I decided that I would get one more 'dig' in.  "Can I help you with your nightgown or is that a question you don't want to answer either?"  Suddenly I was the injured child.  My mother became the mature one. with a kind tone she replied, "I didn't mean that you couldn't ask me questions...I wasn't really mad at you. I'm just mad at the situation," she told me with a lucidity that I hadn't heard in over two years.  I was amazed.  It was like a slap in the face.  It calmed me right down and now I was apologizing to her.  I explained myself telling her that I loved her and as her daughter who cared for her I sometimes might push a little too hard.  I felt terrible.  Reminding myself that I shouldn't lose my temper, that I was dealing with someone who couldn't help herself, I had to allow for my mother's temper just as I might do with a small child who found that the only means of expressing frustration was through an emotional outburst.  I told Mom that it was okay for her to get angry once in a while.  "Neither of us is perfect," I reminded her with a smile and a wink.
Mom smiled back and nodded.  "I'm sorry," she told me with eyes filling with tears.  "Sometimes when when you ask me questions I get confused.  It's upsetting."
"I know," I told her consolingly.
My heart was full. I was so very sorry I had been angry.  How could I have lost my temper?  I berated myself.  My eyes also filled with tears as I gave her a hug.  "I love you Mom."  I turned and walked away before she could see me crying.  I stood at the door and shed my guilty tears but then slowly remembered my own words I had just spoken to her.  "Neither of us is perfect."  I could forgive myself for my lapse.  It was alright.  I walked back to her bed, straightened the covers and pulled the sheet up under her chin.  "Goodnight.  Sweet dreams," I told her softly.  She was already rolling over to fall asleep smiling sweetly.
"Thank you," she mumbled back in a sleepy voice.
I turned off the light and walked away grateful that the day ended on a good note.  There was no real resolution. However, there was solace in knowing that beneath the high emotion there was still a profound love.  The love that we shared was sometimes battered, sometimes abused, and even sometimes ignored, but still there, still in tact.

It is a strong reminder that the memories might be gone, the mind might be failing, but as long as there is a breath to breathe my mother will always know deep down inside that she is loved.  Love speaks to the part of her protected by some unseen force.  Her being...her soul will always be the part of her that time and the ravages of Alzheimer's will never touch.  That is what I speak to...it's what I will fiercely protect, treasure, and address when my words have lost all meaning, when her awareness is gone, and when her thoughts have dried up.  When her own words fail and the smile fades, she will still know I love her.

Controlling Interest

About 10 years ago I had an epiphany. My husband Skip and I were driving in a new car and listening to some music that didn't appeal to us. I reached over to the car radio buttons. I hesitated for a moment to look at the controls trying to figure out what to do. Finding the right button I depressed it to change stations. Like a flash, Skip pushed his fingers to hit the button again.
"What are you doing?" I yelled.
"I'm changing the station," he answered definitively.
"I know that," I answered with a heavy dose of sarcasm. "Didn't you see that I was already changing it?"
Skip didn't answer. This did not make me happy. I wanted an explanation for his behavior. "Don't you think I can change a radio station?" I pushed for an explanation.
"You were doing it wrong," he mumbled.
"What? WHAT?! How could I be doing it wrong? That's ridiculous." To demonstrate that I knew what to do I reached over to change the station again. "Where's NPR?" I asked as I moved closer to the button. Skip's hand was there covering the controls. He brushed my hand away. Unwilling to yield to his knob-pushing prowess, I persevered. I pushed his hand away and studied the controls. A split second later, Skip answered my push with a shove. Before I knew it we were having a push and shove fight with our fingers. We were like a couple of four year olds. We were getting angrier with each assault of the other's index finger. Skip won delivering the station I sought. I was immediately angry and silent. (That's always a bad sign).
Skip wore a victorious expression as he returned his attention to his driving. I however, didn't want to drop the subject and allowed my anger to foment as I thought how bullying it was of my husband to push my hand away. Suddenly it came to me--my epiphany! After so many years of marriage I discovered that he was a control freak!
Oh my G-A-W-D!!! I was married to a CONTROL FREAK!
I was about ready to let him know what I thought of him when it occurred to me that I had given as good as I got (so to speak.) Oh no. There was my bigger epiphany: we were both control freaks. This newfound enlightenment came as not only a surprise but an embarrassment. How could I have overlooked something so obvious? We had been married for...like...uh...FOR-EVER! I couldn't wait to share my revelation. "Hey Skip. Guess what? We are BOTH control freaks." I made this declaration like one might announce that she had received a special award.
Skip thought for a moment and then grudgingly agreed. "I guess that's not too good," he observed.
I nodded in agreement. It became a somber moment as I considered the ramifications. Putting a name on it helped me understand past squabbles. I reviewed the time I told Skip to stop pulling weeds because I was unhappy that he was removing the 'greenery' on our front hill when we were having a party the next day. He continued weeding thus ignoring my attempt to control the situation, and asserting his own control. There were lots of examples that led us to don our battle gear. Aha! Now I understood.
The problem with seeing one's personality deficits is the strong desire to sweep them under the carpet. There was no question that this was a huge blow to each of our self esteems. Perhaps it was best to ignore this knowledge.
Well, as I said when I began; that was 10 years ago. Since then nothing has changed. In fact it may have served to highlight our imperfections and elevate them. I believe that each of us wears our self discovery as a badge of honor. We make no excuses. We embrace our differences and indulge our...um...' similarities'.
I sometimes think that even when we are old and decrepit we will still continue to vie for control of every situation; neither of us willing to give ground to the other. I can see us now. Skip and I will have walker wars as we struggle to reach the TV remote before the other. We may be shuffling and drooling but, alas, we will still be card-carrying Control Freaks!