Friday, December 8, 2017

White Rooftops and Cinnamon Coffee

As we decorated the house for Christmas today, we looked out the window and saw that big white snowflakes were falling. It was a magical moment.  Here in North Carolina we don't get that much snow and being a native of Southern California, it is twice as exciting whenever the white stuff begins to fall.  I began yelling for my mother to come see.  She didn't understand.  She hustled over to the kitchen counter thinking that it was time for lunch.
"No Mom.  It's snowing," I yelled excitedly.  "Look outside!" 
Mom nodded and continued to sit at the counter looking for her plate.
It took a while for her to comprehend.  There was just too much distracting her, but eventually she went to the window and looked outside.  Like a child she smiled a big smile and exclaimed, "Oh look!  It's snowing outside."
"Yes!  That's what I was trying to tell you." I showed her how the ground was turning white.  Mom began singing, 'It's raining it's pouring, the old man is snoring...'
"No, no...it's snowing," I corrected. 
Mom continued to sing her song though.  She was stuck in the raining/pouring loop.  Five minutes later she asked me, "Is it snowing outside?"
"Why YES!  Look at that!" I remarked.  (Sometimes I just enter her world.
 It's easier than saying 'I know...I told you that before'.)

I turned on some Christmas music and began to sing along. Skip made some cinnamon coffee and the spirit of Christmas filled the air.  Mom parked herself in the hallway as I began to decorate the tree.  She seemed to understand that something different was happening and I asked her if she knew what time of year it was.  She thought for a while and then, miraculously announced "It's Christmas!" Then I encouraged her to sing along with the Christmas songs but again she took up the Raining/Pouring refrain.

A few minutes later a friend dropped by and Mom began singing her song to my friend.  She was smiling with excitement as she pointed outside.  I had my own song I sang in my head.  'It sleeting and snowing; but Mom isn't knowing.  She doesn't know rain from snow but my oh my she's glowing!' 

When my friend left I thought that I might try one more time.  "Hey Mom.   You know the song 'White Christmas'?" 
Mom blinked at me, so I sang a few bars to remind her.  I figured it would help her understand that it was snowing outside.  She remained silent so I said something about the growing blanket of white. The rooftops were beginning to hold the snow as well as the grass and trees.  What a visual treat!  "Mom, look!" I walked her to the front window.  She looked out in amazement.  A big smile lit up her face.  "Look!  It's snowing outside," she told me.  Then, as if I hadn't heard it before she began to sing...well, you know:  "It's raining it's pouring..."

Sunday, December 3, 2017

In the words of Dylan Thomas: 'Do Not Go Gentle...'

I cannot believe that it is December again.  I am not ready for another holiday season and yet, before I know it, it will be over.  I feel like if I blink it will be Spring.  It speaks to the importance I MUST place on each moment.  I have allowed the moments to slip by.  How else can I explain this year?  The days...often filled with frustration, stress, worry and exhaustion have raced by.  Wasn't it Easter just yesterday?  Wasn't I celebrating the arrival of 2017 a moment ago?

Ah, sadly, my mother is slipping away all too quickly.  How do I slow the days down?  How do I hold her last moments (so infrequent) of lucid thought?  I looked back to a year ago.  I wrote about the hectic days, the craziness that precedes Christmas.  At that time my mother was receiving hospice care.  We thought that she was experiencing her last days.  Suddenly, she bounced back -- a full recovery!  It was a Christmas miracle of sorts.  I worried that at any moment she could take a turn for the worse and lapse back into the comatose state she was in that prompted a call to hospice in the first place. But days and weeks turned into months.  My productivity slackened as I spent more time with her, watching, caring, administering, but mostly just sitting.  Her interest in everything had waned.  Her communication was minimized and her comprehension was severely limited. So why didn't the days drag?  Why is it that the less I did the faster the days seemed to fly by?  Isn't that counter-intuitive?

I have gone over and over this past year's events; the conversations with friends, the dinners with family members, the laughter and good times, the deep discussions, and playful moments with my spouse.  I thought about the entertaining we did, the tea parties, the small dinner parties, the funny moments with Mom and the not-so-funny moments that Alzheimer's brings as well.  None of it...NONE of it was more than a moment ago, I tell you.  What a nasty trick the Universe plays on us.  The older we get and the less time we have, the less time it takes to get there.  I am suddenly reminded of the poem by Dylan Thomas which made no sense to me when I was a young girl studying famous poets. The lines resonate with me now: 'Do not go gentle into that good night. Rage, rage against the dying of the light.'  Well, I am raging indeed!  I am raging for my mother who cannot speak to it herself.  I am raging for myself as I witness the limited time ticking away.  I am raging for all of those people who helplessly witness lost time with loved ones and wish that they could harness the minutes to hold them for just a while longer.  

Tonight as I go to sleep I will focus on the minutes.  I will treasure each second, each breath with a new-found appreciation.  And tomorrow, as I awaken to a new day, I will promise myself to enjoy the time that I sit with my mother doing absolutely nothing but sharing space and air together.  She may not think about it, nor remember it, but I will do so for both of us.  I will look at her gnarled arthritic hands, her face lined with years of expression, from love, disapproval, smiles and frowns, joy and sorrow. I will look at her silky white hair lying limp and thin on her pink scalp.  I will apply lotion to her wrinkled skin hanging with uncertain direction off of delicate bones. I will marvel that a person of 98 years is still able to be as mobile, as agile while she lifts her legs to assist me in putting on her socks.  Her questions, her comments, as limited as they may be will register in my brain and store in my memory.  "Who am I?" I will ask her.  She will answer one of her many ways.  "Are you my neighbor?  Are you my mother? Are you my friend?"  I will smile. "Yes, I am," I will agree to whatever she chooses to define me.  I will take it in, all of it, because it will be a day from now or a year from now that I will look back and rage against the diminishing moments..."Where did the time go?"

Excuses Wrapped in Chocolate

My life is a non-stop sit-com!
It has become a standing joke in our home that at any given moment if one were to check in on us there would be some sort of drama, upheaval, crisis, or catastrophe.  It's just how it is with us.  If there is a rain storm, we are the ones whose sump pump stops working at 2 AM and we have to bail water.  We are the ones with the pipe leaks that cause damage to our ceiling, or a refrigerator that stops working with it full of perishables.  We are those people who never seem to do things in a quiet way.  There's always an issue that requires immediate attention.  If you have followed my blogs you already know this.  If you have read my books like 'Don't Build a House When You're Going Through Menopause'  or the soon-to-be-published 'Calamity Central' you have to agree that there is never a dull moment in the Bryan household.  So it will come as no surprise that when I decide to make a  dinner for company something is going to go wrong.  Being aware of this I plan ahead.  Especially with my caregiving responsibilities, I am careful to allow for mishaps and time things accordingly.  Consequently, when we were meeting our son's girlfriend's parents for the first time, I planned a nice dinner to welcome them to our home, allowing plenty of time for preparation.  I chose a simple menu with one of my specialty desserts.  I hate to brag, but I do make a killer chocolate cake that actually tastes better when it has been baked the day or two before. I figured that I would bake it and put it in the freezer.  As I assembled ingredients I knew that it would be best to bake the cake after putting Mom to bed so I could concentrate on what I was doing without interruption.  Unfortunately, that meant that I couldn't get started until after 8 PM.  

*Note to reader: Stay with me here as I set the stage for the disaster.

 While waiting for Mom's bedtime, I figured that I would put up a bread dough for homemade dinner rolls.  We buy huge bags of flour for my baking and we keep the bag on the floor of the pantry but I scoop out some of the flour into a large plastic bin that is easier to handle.  On this particular night I removed the flour bin and was about to measure out 6 cups of flour when I noticed a moth larva on the lid of the bin.  I immediately panicked knowing that moth larva meant that we had an infestation in the pantry.  This happened to us once before and it took us forever to find the offending grain that attracted the moths.  Meanwhile we had to throw out lots of food, so I was understandably worried.  I began looking around at all packages (most were preventatively packed in sealed containers.)  The flour was the only source that showed possible infestation.
"Skip!" I called.  "I need help!" I needed muscles to help lift the gargantuan bag so that I could examine the contents more closely.  I took a sieve and began to measure out the flour one cup at a time examining it and transferring the filtered flour to a bowl.  After a great deal of time I found no evidence of infestation and then began to do the same to the flour in the sealed plastic container.  Still, there was no sign of moth larvae which meant it was elsewhere in the pantry...lurking until I needed a particular product.  Then, and only then I would be surprised with the remnants of ugly larva shells and throw out a much needed ingredient for a meal I was preparing.  Isn't that always the way?  I was relieved to know that I didn't have to send Skip out for an emergency bag of flour that evening though.  It meant that I could continue with my plan, albeit my entire kitchen was now sporting a layer of flour from all of the sifting and shaking.

I quickly prepared  the bread dough and set it aside to rise. Then I focused on measuring ingredients for the cake.  When all was ready I even began to roll out the rolls before Mom's bedtime, congratulating myself on my efficiency.  There was dough left over so I decided to make some cinnamon buns -- Skip's favorite.  Once Mom was in bed I began my baking in earnest.  The dinner rolls were in the oven baking while I prepared the cinnamon rolls.  I was watching the clock and distracted by the mess in the kitchen with the bowls of flour still sitting out.  (That's my first excuse...there'll be more in a minute.)  I rolled up the sweet rolls and popped them in the oven after the dinner rolls came out and then began preparing the cake that called for 4 eggs.  The last thing to do was to carefully and slowly pour boiling water into the cake batter while the mixer was set on low. That was so the eggs wouldn't cook.   There were no clean measuring cups so I grabbed a small plastic one that is a little light weight and awkward to use.  (That's my second excuse). I boiled the water and poured it in the cup to dispense in the bowl while the rotating paddle worked it into the batter. As I poured the liquid some of the water splashed out and burned my hand.
"ARGH!" I yelled, jerking my hand back and dropping the cup into the mixer.  The paddle hit it with a thunk and a splash, and rather than damaging an expensive mixer I turned it off to retrieve my cup.  With a burned hand I ran to the kitchen sink to run cold water on it, but had to hurry back to the batter before the hot water cooked the eggs.  (My third excuse).  In my haste, distraction, and pain I turned the mixer on high forgetting that the water had not yet been incorporated into the batter. There was an explosion of chocolate that splattered everywhere.  I was covered in chocolate. The walls were covered in chocolate.  The cabinets, the sink, the counters, the canisters, the cups, pots, glasses and bags were all covered in chocolate.  Skip came running when he heard me howling and pointed out that the ceiling was also splattered with chocolate. He ran for a ladder and a sponge mop. I began sponging off all of the other surfaces as my oven buzzer announced that the cinnamon buns were done. I had to stop my cleaning so my baked confections didn't burn. I couldn't figure out why they didn't smell like cinnamon until I removed them and realized that I had forgotten to add the cinnamon to the mix.  What a disaster!
"Um honey?  How would you like something besides cinnamon buns?" I asked sheepishly.
"No.  I like cinnamon buns," Skip reassured me.
Sighing, I tried to think of what to do to save the buns.  Then it came to me. Being resourceful, I began mixing an orange sugar drizzle. "You know, I was thinking that maybe these should be...um...   vanilla orange buns".  Before Skip could protest I sliced off a sample and presented the warm gooey bun for his tasting pleasure.
"Mmmm.  Delicious!" He told me.
Aha!  I saved the buns and actually discovered a new bit of deliciousness.

At the end of the evening I  baked my cake, did two loads of laundry filled with chocolate covered towels and rags, put the flour back in the pantry, packaged the rolls and buns and put everything in the freezer.  I even managed to clean up the pots and pans.  It was 1:00 AM when I climbed into bed with an exhausted sigh.  My mind was clear though; another crisis was handled and aside from a hand that still hurt from the mishap with the boiling water, all was in order. 

 ****

The next morning while Skip sat with Mom, I ran from an appointment to a lunch meeting and then back home with an hour to spare before a phone interview. I saw Mom walking in from outside where she had been enjoying a sunny November day.  She smiled broadly when she saw me (which was a good sign that she recognized me.)
"Hi Mom," I greeted.  "What have you been up to?"
"I was just enjoying the sun," she told me. Then she gave a thoughtful look at me and asked, "Would you like me to help you go outside?"
I smiled appreciatively and told her with utmost sincerity, "Oh that is so kind of you to offer to help me but I have some things to do."  I mused over her offer.  It told me so much in those few words.  Mom was still mobile and confident enough to help others.  The part of her who was always helpful, always ready to do something nice for someone, was still present.  Most of the time it was buried under the numbness of fuzzy thinking and a brain destroyed by dementia.  But every once in a while, it came out and showed itself.  Skip, who overheard what Mom said, looked at me with a puzzled expression.  It was such a strange comment and certainly out of character for her present situation.  He and I exchanged a couple of words about how weird it was and for him, that was the end of it.  For me, however, I thought about it for quite a while.  I was ready to begin my baking again.  I magnanimously invited Mom to sit down and watch in a rare moment of generosity. Normally I was more inclined to grouse about her being in the way and underfoot but this seemed to be something I wanted to do today.  In fact, when I had finished my preparations of a delicious chocolate frosting, I offered the spoon for her to lick clean.  She was so pleased.  With each taste she remarked, "This is delicious!"  It was such a simple exchange but it was so meaningful.  This sweet moment was one to remember, one to cherish.  It just goes to show me that not all days are pandemonium-filled, and along with the craziness there are wonderful moments of sanity.


Wednesday, November 15, 2017

Sharing Caring

I really don't know where to begin.  This is so horrible and yet, weirdly funny.  I have told similar stories before that were equally, ehem...'difficult' but this one...oh this is so much more!

I began my morning checking my email while it was still quiet.  Mom was still asleep and that allowed me some precious minutes of undisturbed personal time.  My laptop remains permanently on the coffee table next to my mother's chair.  I realize that bending to type is a bad position for one's back and have suffered back strains when working that way; but with my caregiving duties I find that it is really the only way I can work and still keep an eye on Mom.

As I bent to answer an email I noticed that my back became tight and I rectified this by sitting back on the sofa and placing my laptop on my lap to finish typing.  With hips thrust unnaturally forward and tilted, my body staged a revolt. I didn't realize this until I heard Mom walking about upstairs and rose from the sofa whereupon my back locked stubbornly refusing to move or allow my legs to propel me forward.  I howled in pain sending Skip running to see what was wrong.

"I can't move," I told him as he helped me maneuver myself back to the sofa.
"What can I do?" Skip asked with concern.
"I dunno...just...um...get me a pillow."
Skip grabbed two pillows and pushed them behind me.  "Can you lift your legs?  Can you twist? Can you bend?" he asked trying to assess my injuries.
I answered with moans and groans.
Meanwhile Mom continued to pace upstairs growing impatient that no one was coming to get her. This was the moment we had dreaded -- the reason that I never left home overnight because I didn't want Skip to have to help Mom get into her clothes.  I wanted to spare him the sight that could never be forgotten. A naked 98 year old is not something one normally sees and frankly, it's just not the way I wanted my husband to remember my mother. But...As the saying goes; desperate times call for desperate measures; and Skip looked pretty desperate when he walked towards the door saying that he would take care of dressing Mom for the day.  I listened on the monitor as Skip greeted my mother.  Then I heard him explaining what was going to happen.
"Here are your clothes.  First put on your undergarments and then your sweater and pants.  I'll wait at the door and when you are ready, just call to me and I will help you with your shoes and socks."
For most people that would be sufficient, but with my mother the instructions might as well have been in Latin!  After a sufficient amount of time, Skip walked back into the room and I heard him exclaim in an agitated voice, "No Mom!  You need to put your bra on...no wait...NO!  NOOOOOO!!!  It was too late.  I knew exactly what had happened.  Mom couldn't dress herself anymore. She had whipped her nightgown off so that Skip could assist her.  Later, when Skip came downstairs looking like he had just smelled something terribly disagreeable I asked if what I thought he saw he had actually seen.  "Oh yes!" he told me with utmost displeasure.  His eyes rolled so many times I thought for sure they would get stuck in a permanent 'up' position.

The day progressed without any change in my condition and that night Skip helped Mom back into her nightgown and to bed.  I had hopes that I would feel better the next day or the next, but alas, the condition remained the same and Skip grew used to assisting with dressing Mom.  I felt awful about it but Mom was oblivious.  Then yesterday when we thought it couldn't get any worse, the perfect storm struck.

I was feeling a little better and decided that I could make lunch for the three of us if I stood in one position, no bending, allowing Skip to fetch ingredients and dishes. 
"Can you get Mom something to drink?" I asked as I flipped the omelet.
Skip must have thought that an omelet meant it was more like breakfast and poured my mother a glass of orange juice.  I didn't notice this however, until she had finished almost half of it.  I reminded Skip that orange juice usually caused my mother huge digestive distress.  Skip argued that it would be fine and ignored my protests.

I felt the familiar tightness in my back and realized that I needed to return to my lying-flat position on the sofa. Skip assured me that he had everything under control.  When Mom finished lunch Skip washed some grapes and gave some to Mom.  Mom, being oblivious to how much she had eaten or how she felt, readily downed the grapes and sat down to watch some TV while I (upon discovering what she had eaten) told Skip that she was going to be sick.  No sooner did I make this proclamation than my mother gave a gulping cough and got up quickly.  "Hurry!" I yelled.  "Skip!  Mom's going to throw up!"  Skip rounded the corner waiving his arms and rushing behind her as she slammed the door to the bathroom.  We heard the loud heaves from the other side of the door.
"Not in the sink!" Skip reminded her but knew already that it was exactly what she was doing.  Mom had forgotten where to throw up and it wouldn't be the first time we would gaze at a sink full of vomit. (This is the nasty part but I just have to go into the dreadful details.)  I could hear Skip almost gagging as he told Mom to go wait outside.  He was cursing quietly as he recounted to me what had happened.

"I told you," I reminded him.  I didn't like being right this time.  It was just too awful and I felt so sorry for Skip who was the one who had to clean up the sink.  There was no washing down a full lunch that had not even been digested.  Skip left to get a scooping bucket, some Lysol and latex gloves.  Before he could begin his disgusting task, Mom was already headed back to the bathroom looking panicked.

"Wait, wait," he yelled hastily rushing her to the toilet.  It was only the last minute that he noticed that the toilet was not flushed and when he went to flush it, it began to overflow.  "Hold on!  Wait...here's a bucket.  Use this." He practically threw the bucket at my mother as he lifted the back of the toilet lid to stop the flow of water.

"What's going on in there?" I called.  When Skip told me of the emergency I tried to get up off the sofa but quickly discovered that my back had locked up again.  I began flopping around like a dying mackerel while Skip ran back and forth from the bathroom to the garage and back with mop, bucket, and paper towels.There was more retching and then came Mom's announcement, "I have to go to the bathroom.  I'm gonna be sick".

Skip managed to get the toilet flushing in the nick of time and ran out of the bathroom to await the outcome.  He didn't wait long (and frankly would have gladly waited longer -- like for the rest of his life).  Mom had managed to make a mess of things (I won't elaborate). Skip could be heard saying, "Don't move.  Where are your panties?  Oh no!  Um...just wait.  I need to get you some clean clothes."  Then he ran out of the bathroom to the laundry room where a clean load of Mom's clothes awaited folding.  I saw him flash past me to the bathroom and heard him instructing Mom what to do.  Take off your shoes and socks.  No, your shoes...your SHOES.  No those are not your shoes.  UGH.  Okay.  That's okay.  Your socks need changing too.  No...keep your pants on until I leave.  NO...NOOOO.  Oh well.  Okay then.  Here.  Take these."  About 5 minutes later Mom emerged in a whole new outfit.  There was much clanging and banging in the bathroom; then the door opened and Skip handed Mom the bucket.  "If you need to throw up use this bucket."  Mom gratefully took the bucket and retched loudly.  "What can I give her?" He asked me.

I was tempted to reply 'No orange juice,' but helpfully told him where some anti-diarrheal medicine was.  Mom swallowed the medicine with a chaser of water and promptly threw it up in the bucket.  The whole 'event' lasted for about an hour. She was miserable, Skip was miserable and I was miserable. When Mom began to feel better, as is the way with Alzheimer's, she soon forgot the entire episode.  Skip, however, was still cleaning up. When at last Skip emerged from the bathroom after another hour, having cleaned and polished everything, I hugged him tightly.  Feeling around his shoulder blades I asked, "Does your back itch?"
"What?"
"Does your back itch where your angel wings are growing in?"  We both laughed.  Yes, my wonderful husband had done what most people would never do.  At that moment I realized that our wedding vows that we recited 49 years ago were being strongly tested -- that 'Through sickness and in health' part.  I doubt that either of us thought about a package deal that included in-laws as well.  Both of us promised to share our lives with each other (and evidently with others too).  Skip demonstrates his love and devotion to me every day, but this...THIS is the ultimate affirmation of both sharing and caring.  How amazing this man is!  I am so grateful to him for getting us through the day.

As I write about this my emotions are mixed.  The most unpleasant things provide us with positive insights, and lessons learned. I am also reminded that I find humor in the strangest things for as I recount this I begin to laugh out loud. The image of Skip almost airborne flying from garage to bathroom while I could do nothing more than observe and yell instructions is worthy of a sitcom. The bonus is to find the gratitude, and the gifts these experiences bring.  Skip is my gift (and my mother's as well.)  He dug deep and did what he needed to do.  For me, I found compassion for both my mother who was suffering and for Skip who was also suffering.  The greatest gift is to know that we are all three sharing the journey.  It is the caring that bonds us and binds us to each other.  I do not want to minimize this for as we continue on we see this every day and in every way. 

Friday, November 10, 2017

A Day at the Spa

When speaking to care givers I always remind them of the importance of de-stressing.  "Take care of yourselves," I tell them.  Find activities to relieve your stress.
I am reminded of this when I think of my first foray into the de-stressing activities such as massages and the like. It was many years ago but has totally shaped how I feel about going for a massage. I know refer to it as PTSD -- Post Traumatic Spa Day!

My very first massage was at the request of my girlfriend, Joanne who wanted to celebrate her birthday by inviting a group of ladies to join her at a spa. She showed me the packages they offered and I selected one for total relaxation. Since I was working in a very stressful job, I thought that this sounded quite desirable. It included a lymphatic massage, a whole body muscular massage, a mud bath, an herbal bath, and a mineral body wrap. I had never indulged myself in any of these activities so I had no predetermined bias one way or the other. On the day of our visit, I sat expectantly in the lobby of the spa awaiting my first 'procedure'.  When a young woman appeared in the lobby calling my name I rose and greeted her.  "Follow me," she said without any social pretense. I walked down a long hall and into a cubicle where there was nothing but a massage table, a bench with a bottle of massage oil,  and a hook on the wall.  "Take off your clothes," she commanded abruptly.  Obediently I began disrobing until I stood in front of her in my undergarments.  "Take everything off," she told me. I paused looking around embarrassed and confused.  Wasn't there supposed to be a sheet or a robe or something?  Unless I was missing a secret cupboard where a stack of towels, sheets and modesty robe were stowed I thought that I would have to endure a slight amount of humiliation by getting naked in front of a stranger.

"Um...oh.  Okay," I agreed removing the rest of my garments along with my dignity. I sat down on the paper-covered table and the young lady told me to lie back while she began working on massaging my lymph glands.  Now for those who know about the lymphatic system the lymph glands are prominent in certain areas that one might not want a stranger massaging.  I giggled nervously and told the masseuse that I expected her to buy me dinner first.  (One must resort to humor in times like that!)

The more I was um...uh...'manipulated' the quieter I became. I had to do something. I couldn't stand the silence.  I began small talk. "Soooo, Have you been here long?  Um...what's your name?"  I learned that her name was Crystal.  I continued, "So Crystal, do you like Sushi? Did you have to go to school to learn this?"  I found out that Crystal was only a part time massage therapist and her real interest was ballroom dancing.  Oh lucky me!  I had drawn the short straw and got Crystal the ballroom dancing masseuse.  I endured a half hour of her chattering on about tangos and waltzes feigning interest while praying that she would finish soon. At long last Crystal told me that she was done.  "Now, don't you feel better?"
I muttered something affirmative just so she wouldn't try to repeat anything to make me feel okay.  It's kind of like when you go to the dentist and after being worked on something doesn't feel quite right and the dentist makes you open you mouth so he or she can file away at a tooth some more.  Finally out of desperation you tell the dentist it feels fine. So it was with Crystal. "Yup. It's good.  Yeah.  Wow.  Amazing."
Crystal smiled victoriously and announced that she was now going to give me a nice relaxing massage.  
RELAXING! Seriously?  How could I relax?  I kept thinking about how violated I felt.  (Oh I know, I know.  All reputable message therapists tell me that I should have had a sheet or towel or something, and how unprofessional...)
Anyway, when my 'relaxing' message was over, I was escorted into another building.  "Good riddance," I thought as I bid good-bye to my torturer.  In the next building I was greeted by an efficient young lady named Alice who immediately escorted me to a changing room.  Again I was told to take my clothes off but this time I was offered other options.
"Walk down the hall and leave your clothes here but keep your shoes on.  Then grab a sheet from the shelves and go down the hall to the showers.  Take your shoes off, then leave the sheet on the shelf and take a quick shower before wrapping in the sheet.  Then get your shoes, bring them back to the changing room over there, get your clothes, go to the lockers here, and leave them, taking a number and carrying back with you .  Make sure to grab a towel and then go to the mud room.  I'll meet you back in there." She pointed at a curtained room in the front of the building by the door.  I was still trying to figure out where the changing room was and couldn't remember if I was supposed to take a shower first or take my shoes off first.  I was beyond stressed and my mind felt like mush.  I walked back to the changing room timidly and fought to remember my instructions.  When I finally found my way back to the 'mud room' Alice was waiting for me impatiently.  
"Well finally!" she complained.  "I thought that you had gotten lost."
(I was!)
"Okay then."  She changed her mood like an actor changes roles.  Suddenly she was smiling broadly and enthusiastically.  "Time for your mud soak." She pointed at a boiling pit of mud with bits of debris floating on the top.  
"Yech!"  Every fiber of my being rejected dipping itself into that cesspool of germs and disease. "I don't think so," I objected.
"Oh c'mon.  Just step in.  You'll love it."  She reached for my sheet and tugged it off, urging me forward towards the mud.  I stepped tentatively into the mud finding a step with the tips of my toes.  I stopped as I felt the gooey warmth of liquid dirt surrounding my feet.  "Step down," Alice encouraged. I took another step and sunk to my knees.  Just then the entry door slammed, causing my curtain to blow open.  Realizing that someone could look into the room and see me standing there  -- au naturel, I quickly dipped into the mud covering up to my shoulders.  The mud line was topped with a layer of dirty water.  I didn't realize how my boobs would float above the mud making them unruly appendages.  Someone walked past my room and the curtain fluttered.  I packed mud atop my floating pontoons.  
"That's it," Alice exclaimed.  "Cover yourself in mud."  I protested belligerently; but with one more swing of the door and blown curtain I grabbed globs of mud to cover my face, my arms and even my hair.  Alice seemed pleased.  "Alright then.  Just sit back and relax.  I'll come back for you later."
I figured that whatever disease I was going to contract from this pit had already permeated all of the crevices and now I might as well enjoy the time I had wallowing in the warm gooshy, ooshiness.  I lost myself for a moment as I began (for the first time that day) to relax.  Unfortunately that would not last long.  Somewhere in a break room out of sight, Alice looked at her watch and announced that it was time to water down the pachyderm.  Entering the small room she grabbed a hose and told me to get out of the confines of my muddy retreat.  With the water pressure of a fire hose she shot water at every inch of me announcing that I needed to bend over so she could be sure to find all of the mud.  Once again I was reduced to a quivering, yet compliant child as I submitted to Alice's ability to leave me utterly humiliated.  Then I was given my sheet and escorted into the bath room where a warm tub of herbs awaited my next soak.  There was no relaxing.  I merely sat in the tub whimpering and hoping that this torturous day would soon end.  I counted the minutes I was left alone to mull over the events of the day.  I pictured the image of me...in all of my splendor being treated with all of the respect of a meatloaf.  "HRMPF!" I snorted indignantly.  I felt myself stiffen even more as my mind urged my muscles into a posture of protest.  

Alice reappeared after about 20 minutes telling me that my bath time was over.  (Thank God!) Oh but there was one more treat in store for me: The Mummy Wrap!  Alice handed me off to Nurse Ratched who began covering me with bandages soaked in a  mineral mix.  Then she escorted me into a "Slumber Room" where mummies were lying on beds and snoring restfully.  "Just lie down and sleep," she told me.  
"Wait!"  I could barely speak through the gauze covering my face.  "I have an itch," I told her.
"Where?"
"By node..."
"What?"
"Node," I struggled to tell her.  I wiggled my nose under the bandages to show her.
Nurse Ratched offered to scratch it for me then inched me onto my table for indefinite slumber.  "There," she said.  "Is everything comfy now?" (I sensed sarcasm.)
"Umhum," I mumbled as she left the room.  Meanwhile, I pondered the sadistic nature of the people who put together these spa packages as I lay there immobilized, helpless and quivering.  Oh yes, and still itching.

I am the kind of person who finds humor in even the most difficult of situations and as I thought about the various images that came to mind now, I began to laugh.  I couldn't control it.  It rose from my throat and burst forward in spasms of loud guffaws even through gauze.  
"Jessica?  Is that you making noise?" Nurse Ratched asked as she hustled back into the room.  Then discovering it was in fact the troublemaker with the itch, she sternly told me that if I didn't quiet down I would be ejected from the slumber room because I was disturbing the others.  I laughed louder, uncontrollably, and with gusto.  Firm hands gripped me and walked me out.  I did not experience the joy of another minute of total relaxation in the darkened crypt.  My fellow mummies were free to go back to sleep.  Ah, but I was free to join my friends in the dining room for lunch.

They were already there, the entire group assembled and sharing stories of how they had a FAB-U-LOUS salt rub, how the herbal splash was DEEE-VINE, how the dip in the floral scented healing waters was A-MAZ-ING, and how the facial masks left them glowing!  Then, they turned to me.  "And how were your treatments?"

I was babbling unintelligibly as I tried to explain that we must have been in a different spa.  How could it be that my experience was so different from theirs?  I tried to enjoy my lunch of weeds and tofu topped with some sort of yogurt slime but everything reminded me of the pit of mud.  

When at last we were released and freed to go home, I finally breathed a sigh of relief.  Having spent a week's wages on this indulgence I wanted to report what a joyful experience it had been but when I saw my husband I rolled my eyes and ran for the bathroom where I peed mud.  Skip asked how I enjoyed myself reaching for my shoulders and commenting that my muscles felt unusually tight.
"Are you tense?" he asked.
"Tense?  Who me?"  I began to laugh.  "Why on Earth would I be tense?"

The visit to the spa will forever hold a place in my memory as an experience of a lifetime...one not to ever, ever be repeated.  Oh...and for the record, I will not submit to any kind of body work.  Yeah, I know -- my loss.

Sunday, October 29, 2017

Undercover Scones



I was baking some scones yesterday.  My mother was very interested in what I was doing.  She sat at the counter watching, waiting and salivating.  For her, the best thing in life is sugar; yes, sugar in any form, served in any way and at any time.  If I want her to smile all I have to do is provide her with a never-ending supply of cookies, cakes, chocolates, and creamy, sugary delights. I have tried to cook healthy foods for her but  alas, she rejects all things nutritious.  In fact, I have found her picking and eating only the craisins out of a chicken almond salad and then flattening the rest of the salad with her fork in a show of derision.  "I will not eat this!" she complains.  If I were to give her a piece of broccoli covered in chocolate then rolled in sugar crystals, she would remark, "This is DEEELICIOUS!"

The more her Alzheimer's Disease progresses, the more displays of avarice for confections I see.  Okay, okay.  She's 98 years old and in good health (other than being in late stages of Alzheimer's) so why do I insist she eat her veggies?  Why do I peddle protein like a wicked Nutritionist?  In my defense, I am not alone.  My husband scolds her for ignoring her protein in favor of a syrupy morsel.  She scowls and complains.  She pushes her food around her plate like a petulant two year old.

But I digress.  Back to the scones I was baking: they were lovely little bite-sized treats that were coated with a sugar glaze guaranteed to send her blood sugar levels soaring.  I finished dipping and glazing the last scone when I looked at the clock and realized that I needed to leave for an appointment.  About the same time, my husband, Skip went outside to meet with a man from Critter Control about our problem with voles and moles.  (Yes, we have pests running rampant among our plants chewing roots and digging tunnels in the grass.  To be clear, the moles dig the tunnels and eat insects and worms while the voles borrow the tunnels to find their way to the roots of plants.  Their penchant for devouring all edible greens is truly legendary.  I wish that they could teach Mom to enjoy greens as much as these small rodents!)  Anyway, as I was saying, I had just finished my job of baking the scones and realized that the drying rack was too tempting to leave out.  As soon as I might exit the kitchen my mother was sure to be all over these morsels like  flies on flypaper.  I began to look around for how to hide the drying rack.  It was too large to place in a cupboard.  Skip suggested I put it on the washer in the laundry room and close the door.  I laughed sardonically.  Mom had not met a door she couldn't open.  In fact, she was a known escape artist.  She even managed to figure out how to get baby locks off of cabinets.  A closed door was certainly not going to keep her away from the scones.  I decided to place them in the cooling oven even though I risked a slight drying or melting and compromise of texture.  I couldn't risk leaving my mother alone with the scones.  So under cover they went.  Hidden from my mother's search and discovery I could safely leave home to make my appointment.

One might think that this is quite petty of me. If Mom wants a scone why not let her have a scone?  I hasten to remind the reader that a person with advanced Alzheimer's doesn't remember things from moment to moment; so as soon as Mom eats a scone she will reach for another thinking it to be the first one she has sampled.  This will continue until she gets sick to her stomach often resulting in what I delicately refer to as tossing her cookies!  So I control the amount of food intake and sugar she has.  Oh, and one more little fact; sugar gives my mother horrible indigestion.  We are constantly administering antacid tablets.  (We buy them in bulk!) I really do try to keep some semblance of balance while still giving Mom what she loves.

Over the years I have received supportive comments from friends who tell me I am a good daughter.  I am always happy to hear this when I am struggling with the issues that I have as Mom's caregiver.  This week, for example, I yelled at her when she blew her nose in her sweater.  I had the option of responding the right way or the way I wanted to respond.  My two mini selves (the good mini-me and the bad mini-me) sat upon my two shoulders.  One cautioned me to think carefully how to react. "Just hand her a tissue and then take her sweater off and replace with a clean one."  The other told me "Go ahead.  Tell her how you feel! You know you want to.  It's not good to suppress your feelings!"  Guess who won?  I shouted, "MOM!  What are you doing?  Why did you blow your nose in your sweater?!"
Mom replied, "It wasn't a big blow.  It was just a little blow."
I felt steam coming out of my ears as I bellowed, "I don't care about the amount of blowing.  I still have to wash the sweater now!"  (I said a few other things too and Mom turned around to face me indigently complaining that she did not like me yelling at her.)  I continued for another few seconds until my anger subsided and then left the room.  To those dear friends who think that I am a saint; I confess I am most definitely not!

So, here I sit with the knowledge that it is nearing my mother's tea time.   The angelic side of me says, give Mom as many scones as she likes while the devilish side of me says to give her one bite-sized sample and remove the rest.  What to do, what to do. I am still ruminating over the nose-blowing incident.  I am also reminded that my mother (who never ever goes into our inner sanctum -- the master bedroom) found her way to our bathroom instead of using the one which is designated as hers and which has her toilet chair and easy access.  I looked up from my work and saw that she was M.I.A, called for her, walked around the house looking for her, becoming increasingly worried as to her whereabouts, and then finding her wandering out of the bathroom. She had not flushed the toilet.  She had not used the toilet paper.  She had been less than careful.  (I will not go into details.)  I was livid.  My mini-me's were both screaming in my ears. When confronted she was defensive and irritated with me for being upset.  Yes, I was thinking of the other incidents and how difficult things were becoming. Mom's attitude was far more argumentative after tea-time. Suddenly, I had an epiphany and at that moment I made the decision.  Sugar makes Mom happy but too much sugar makes her cranky. What I did was obvious. The answer could be read as a news headline: Scones Stashed in Effort to Save Survivors! 



Saturday, October 21, 2017

Emotionally Detached




I do a lot of research on Dementia and Alzheimer's.  Most of the information is clinical rather than anecdotal.  There are a few things I have come across that delve into the caregiver's perspective and how to get past negative feelings to be more effective in caring for loved ones.  However, the overriding body of work on the subject approaches it with dos and don'ts.   'Do speak gently, slowly, simply.  Don't accuse, question, correct...'  Do this, don't do that.  On and on it goes with the dispassionate how-to approach to caregiving.  I could write a book on the dos and don'ts.  It's fine for caregivers who have no emotional attachment to the patient. Oh sure, they may grow to like someone but it isn't their mother or father, husband or wife.  A caregiving worker is there to provide care professionally.  He or she is paid to be nice and to do the 'DOs' correctly.  At the end of the day a professional caregiver can go home; eight hours on and 16 hours off.  No emotional attachment.
Doctors, nurses, social workers, and others engaged in advising family members tend to focus on the things they see when patients come to them.  They teach family members about the illness, what to expect, how to handle it.  But...  (and here is where I will now step upon my soap box) who is caring for the Family Caregiver?  You know who you are.  You are the one who is providing caregiving in the home, the one who is there 24/7, who gets no break, who cooks and cleans, who worries and frets, who deals, and deals, and deals, day in and day out.  You are the one who repeats the same instruction over and over, provides the same answer, who leads by example, who calmly, quietly, gently coaxes, who diverts rather than corrects, who smiles rather than frowns, and who watches, hovers, 'mothers', remains alert throughout the day and night.  You are the one who (might) get a few hours of respite to run errands but who remains on call -- the go-to person for all things related to the loved one for whom you are caregiving.
When the caregiver slips up, when it becomes overwhelmingly difficult,  when the rules get broken and when the Dos and Don'ts get thrown out the window, what happens?  I looked at this and began to see that there is no safety net out there.  When we fall off the 'perfection platform' into the dark abyss of impatience, frustration, and even anger there is no lifeline thrown to us.  We are on our own.  We claw our way back to self-composure. 
This is where we are missing the mark.  We need to approach this whole caregiving thing differently.  Instead of DOs and DON'Ts how about replacing them with WHENs and THENs.  Allow me to explain further with an example:  My mother just blew her nose in the shawl I had painstakingly knitted for her.
Scenario I:  "Wait. Stop. Here's a tissue,"  I tell her in a calm and cheerful manner.  I hand her the tissue, take the lovely shawl and throw it in the washer.  When I return to the room where my mother is sitting she is taking the tissue and shredding it.  "Oh my!  That looks like fun.  Perhaps you would enjoy shredding more tissues,"  I suggest as I hand her the box so that she can enjoy the fun activity.  Later I am on my hands and knees picking up small bits of tissue all over the carpet and the rest of the house where she has tracked shreds as she has wandered about the house.
Scenario II:  "No, NO, NOOOOOOO!," I shout loudly.  "What are you doing?  That's not a tissue, that's a shawl!"  I am angry and disgusted.  I have just finished cleaning up after my mother has made myriad messes in the powder room, the kitchen and family room.  She has left masticated food she removed from her mouth and put on the counter for me to clean up, and ground in the remains of a chocolate muffin on the carpet.  Her used tissues have been left on the table, her soiled undergarments have been stowed in drawers with linens. I won't even begin to describe the 'joy' of finding excrement on doors and walls.   I have had four hours of sleep because Mom was wandering around all night, and am competing with the constant noise of the TV broadcasting loud enough for her to hear.  My nerves are frayed, my body is tired, and my joy and love is running on empty. 
Scenario III:  "Mom?  Perhaps you would like a tissue," I tell her gently but firmly.  I feel my blood boiling and am trying to keep a lid on the angry outburst I would like to have.  I remind myself of what I should be doing...how I should be reacting; but it's not working.  I am rapidly approaching that out-of-control moment when I act out inappropriately by yelling or accusing, by blaming, by babbling angrily, by showing disgust.  "Uh oh," I tell myself.  "WHEN I find that I am about to lose control THEN I need to take a moment."  I remove myself from the room and sit down in my favorite chair.  I count from 1 to 10 paying attention to my breathing.  I tell myself my favorite mantra.  I repeat it over and over, "Calm and relaxed.  Calm and relaxed.  Breathe in and out slowly.  Calm and relaxed."  It's working.  A minute or two later I am able to rejoin my mother with a smile on my face. 
So, let's look at the three scenarios.  The first is the pie-in-the-sky scenario that the professionals would have us believe we can do and should do.  The second is caregiving gone awry. That's the one I believe we all tremble over, worrying that we will become that person and often do!  That's the caregiver burnout scenario that signals it's time for a change.  The third scenario is the most practical scenario.  It is the one that caregiver support groups should focus on, and the one I believe more books and articles should address. 
When this happens, then look at how to change your own behavior.  Look for the things that will calm you down, Look at the reasons (the buttons that get pushed, the motivations, the sensitivities, the triggers) and find the solutions based on your own wants and desires.  For example, if cleaning up vomit makes you gag and triggers the kind of behavior that will humiliate your loved one for whom you are caring then look at a way to remove your loved one while you are cleaning up the mess.  (Okay, I confess I am that person!  I remind myself that it isn't my mother's fault that she has done something that disgusts me.  It is my personal trigger based on some really awful stuff from a long time ago.  I acknowledge this.  I allow for the fact that I am having a blown-out-of-proportion reaction.  But I don't let her see this.  I muster as much control as is humanly possible and put Mom in another room while I proceed to bluster and blow, gag and show my disgust in the room where the mess is.  Meanwhile, from the other room, Mom is unaware that anything has happened.  There is no humiliation, embarrassment, or shame.  By the time I am finished cleaning up, my immediate reaction of disgust or even anger and blame has dissipated. )  It is just another event in the many unfortunate events that occur when a loved one is ill.
Caregiver support groups and those who are involved in caring for caregivers need to be cognizant of this when advising or listening to their stories.  It is tempting to provide the should and should nots, the dos and the don'ts.  I beg...I beseech, please try harder to address the whens and thens.  That is so much more effective in allowing for a successful home-caregiver experience!