GRAMA-RANG.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What is Love?

When people say, "I love you," it can mean oh so many things.  Today, we learned what one kind of love means.  Our children and their loved ones demonstrated a love that enveloped compassion, consideration, generosity,  and overwhelming thoughtfulness.  We gathered together to celebrate my mother's 99th birthday, and Father's Day.  We even threw in my girlfriend's birthday for good measure.  We had dinner, laughed, loved, enjoyed each other. We had cake and exchanged cards.  At the end of the celebrations, we sat down in the living room to visit and continue enjoying the after-dinner moments before everyone had to leave.  But there was one more surprise...one more act of generosity.  The family handed us a card that said, 'To Mom and Dad.'  What?  It wasn't MY birthday.  Why was I getting this?  I opened the card with Skip sitting next to me, looking over my shoulder.  How could I have forgotten another occasion soon to be celebrated by us?  Skip and I were going to celebrate our 50th wedding anniversary in less than two months.  We had no plans to go anywhere or do anything.  We knew that we would have to put the celebration on hold or at least minimize what we might do to mark the occasion.  There was simply no money to spend of frivolity.  We were budgeting carefully these days.  Caring for Mom had taken its toll on our expenditures and our earning ability.  Even a night out was sometimes prohibitively expensive when one considered the cost of hiring a professional to be with Mom while we attended a dinner or another event.

The card held a surprise that we hadn't expected.  A roll of bills sat inside the card with the most lovely note one could ever get.  It wished us a happy anniversary and held an early anniversary present urging us to think about going somewhere together--to get away and just enjoy each other. The money was to help defray the cost of a sitter for Mom, to take the stress and worry out of being able to get away even if for just a couple of days.

I couldn't read the note out loud.  Tears filled my eyes.  Both Skip and I were so moved by the gift, the amazing thoughtfulness and understanding that we really, REALLY needed this. The note went on to thank us for exhibiting the meaning of commitment. The love they exhibited assured me that we have done a good job with our children.

Cussing is Cathartic

How quickly my mother's condition is deteriorating now!  She is extremely reactive to anything we do, flying into angry fits and threatening us.  Some of it is actually laughable but most is just sad, patience-testing, and anger-provoking.  I knew about various mood changing drugs that would help but was opposed to using them.  I worried about side-effects and hated to administer something artificial; but after putting up with her little outbursts for several weeks,--each one being a bit more violent, I finally contacted her doctor and received a prescription for anti-anxiety, anti-agitation drugs.  "A few drops will calm her down," I was told.  So off I went to the pharmacy to pick up a tiny bottle that cost $55 (our portion of the payment AFTER insurance had paid over half of the total!)  I couldn't wait to administer the dosage and see if she would become a calmer version of herself.  

The first day, there was no change but the second day it seemed like Mom was more of a Zombie than usual. At least there were no emotional outbursts though.  Then day three hit. I walked into her room to help her get up and get dressed.  Her Depends were off (she removes them at night) and there was a large puddle on the floor of her bedroom. As I walked in narrowly missing stepping in the puddle, I saw that Mom's nightgown was on backwards indicating that she had removed it at least once during the night.  Well, at least it was back on her and she hadn't been running through the house naked!  I removed her clothes from the locked closet with Mom standing next to me practically panting with anticipation and pointing her finger at the shoes on the floor.  
"I need the...the...those!" she reminded me. (Mom couldn't remember what the shoes were called but she most certainly remembered that they were in the closet.)  As she sat down she was more focused on the shoes than on getting dressed, freeing herself to grab at them every few seconds.  (I should note that dressing Mom is like dressing an octopus. Her hands grab at everything and she is unfocused on the job at hand.  If left alone, she would wear nothing but her shoes and be perfectly fine with that!)

When I finally managed to get Mom downstairs I was already in a lather since her room was hot and I was working fast and furiously to get her dressed quickly.  I took several minutes sitting under the ceiling fan rotating on the 'high' setting to recover and cool off.  Then I began my day.  Mom sat at the counter eating her breakfast and blowing her nose in her napkin.  As usual, the napkin was then placed on the counter where she took her mug and ran over the top of it 'ironing' it flat.  

"Please don't do that, Mom."  I told her like I had never told her that before,when in fact Skip and I tell her that at least five times per meal.  "The napkin is dirty. You blew your nose in it.  Throw it in the trash."  

Mom argued that the napkin was clean.  As always, I showed her the wet spots and told her again to throw it in the trash.  I would have done it for her but was handling food and didn't want to personally touch the napkin.  Mom sat stubbornly refusing to throw the napkin away and eventually, I reached over and tossed the napkin in the trash.  Problem solved!  Mom shot me a look of defiance grabbed another napkin and blew her nose.  Then she place that napkin on the counter flattening it with her hands.  I turned my back on her and walked away counting silently to 10. When I turned back, Mom was headed for the screened porch and  I was able to retrieve her breakfast dishes, dirty napkin, and coffee mug that was covered in sticky jelly. (It is always a risk handling Mom's dishes!)

All morning Mom walked in and out every couple of minutes.  She was agitated and yet, stupidly, I thought that I could handle it.  By noon, when I fixed her lunch I was so tired of being patient and understanding I could barely wait to feed her and get her back outside.  Again, I dealt with the napkin-turned-tissue that Mom refused to throw away and instead turning it into some sort of origami project.  

"Stop handling that!  It's dirty."

Mom scowled at me and continued to run her fingers across the mucous-soaked napkin.

"Ugh!" I gagged.  I opened the cabinet to show her the trash can.  "Put your napkin in here."

Mom lifted her plate and started to throw it away.

"No!  No!  Not your plate.  Your napkin!  Throw your napkin in the trash."

"I don't have to and you can't make me!"

"Oh yes I can!" I had reached my breaking point.  "Now do it!"  (Mom sat stubbornly, refusing to cooperate.  She mumbled something that was unintelligible.)  I shook the trash can at her and coaxed her a little impatiently.  

She looked away and said, "Stop it!" 

"These are my rules," I told her.  "You have to follow them."

Mom screamed loudly saying that she didn't have to follow my rules.  Now we were in a full-out battle of wills.  I was not going to back down even though I knew that I was dealing with a temper tantrum from a two-year-old. Instead of being the adult though, I countered with my own display of temper and need to control.  "You do this now!" I bellowed in my authoritarian voice that implied the words, "YOU WILL OBEY!!!"  At this point, Skip, who had been working in his office, came running to see what was going on and to keep the two warring factions from killing each other.  When he approached, instead of becoming 'Peacemaker' he entered into the fray.  He told my mother to listen to us and do what she was asked. When she refused, he took her napkin, threw it in the trash and told her to get down from her stool and go sit down in the family room.  When she refused, he guided her taking her by the hands and placing her hands on the walker, then pointing the walker in the direction of the family room.  I could see Mom's face.  She was furious.  By the time she sat down next to me I decided to take the high road and talk to her with a rational and calm voice.  "I can see that you are angry.  Why?"

"Because," she sputtered, "Those people over there think that they are such big shots and they're nobody!  I'm going to get my husband to take care of them. They'll be sorry!" She threatened this in a voice filled with malice.  

(It was definitely time for a dose of the medicine.)  I reached over and administered the dropper-full smiling sardonically.  Within minutes my mother was calm and cooperative.  So much so, that when it was bedtime I didn't think that any more medicine was needed.  Oh how wrong I was!  All night, Mom remained agitated and walking around her room, refusing to go to sleep.  I was too sleepy to responsibly administer any medication and endured the noise and commotion coming over the monitor.  By 1:30 Mom had opened the door a couple of times and Skip got up to put her back in bed.  Mom refused to lie down so Skip assisted her guiding her backwards with his hand on her arm.

"Don't touch me!" she shouted.  "Don't you dare touch me!"

"I'm just trying to help you lie down," Skip told her patiently.

"Get your hands off of me, you Son-of-a-Bitch!" She fumed.  (Mom never, ever said that.  I never heard her use that expression nor did she ever use bad words.  She was always the picture of decorum and propriety.  In all my life I had never heard those words coming out of my mother's mouth. But here she was at 2 AM cussing at my husband.)  There was a long pause and then I heard the door open and close.  Skip returned to bed trying to control his breathing.  I could tell he was upset.  

"What happened?" I asked.

"She called me a Son-of-a-Bitch!" he repeated with disbelief.

I laughed out loud.  What next? I wondered.  Would she drop an 'F' bomb?   For someone with Alzheimer's when there is little control over one's life, one's words, one's actions and even one's thoughts, maybe cussing is cathartic.  Maybe that was the one way my mother could express herself when all other words escaped her, when cognition was limited, and when more than anything, she wanted to be at peace. It was as if we kept poking her with a hot poker until she reacted.  She didn't understand, didn't know why, didn't care.  She wanted to be left alone.  Sadly, I fell asleep understanding this and yet feeling helpless to do anything about it.  I am Mom's caregiver, but felt overwhelmed and more than a little over my head, incompetent, and exhausted. Recognizing this, I was immediately grateful for the answer that came in a small amber bottle with a dropper dispenser.  
Just before drifting off to sleep two things struck me: first I thought of Charlton Heston screaming, in Planet of the Apes; "It's a madhouse, A M-A-D-H-O-U-S-E!" Immediately my mind switched to One Flew Over the Cuckoo's Nest when the patients were given their daily dose of medication to keep them compliant, drugged, and docile.  Was I turning into Nurse Ratched? A small nagging guilt grew inside of me and yet...and yet...I knew that there was no way I could or would be that calm, composed caregiver that could tolerate the cussing and violence.  Yes, it's a madhouse and I have the means to make things better.  I fell asleep with the knowledge that I was doing the very best I could do.