Caregiver's Support Group

Caregiver's Support Group

by Jessica Bryan

2017

Moving through time and space, doing what must be done.

Filling the moments of despair with distractions.

Reminding myself that I must engage in self-love to love another.

I know, I know.  But oh how difficult, how seemingly impossible to take the time,

To take away from the things I must do, the care I must give.

With effort I paint a vacant smile that masks the sorrow, the grieving, the pain.

I go, I gather with others. I gaze at them...the strangers who have come together to share.

They are burdened just as I am, but in their own ways.

We are standing on shifting sands,

Custodians of another's soul, as it exists in a failing body of fragility.

We observe without the power to alter the course of what is to be.

We are merely witnessing the steady progression of life.

Just as the sandcastles built along the shore in the blazing midday sun,

Are soon washed away by the pounding waves of the ocean,

We are reminded of the impermanence of the body.

But the sand...the sand that built the fortresses,

It is still there in the vast sea that stretches across the horizon.

It goes on and on and on, beautifully mixed with the living soup of creation.

We sigh, and find solace in this thought, this knowledge.

For it provides us with the strength to carry on.

Strong arms comfort, enveloping each other in understanding,

Without truly knowing.

We speak, we cry, we confide,

Knowing that somehow this will help ease but not remedy.

Too much...TOO MUCH to bear alone,

And so we find meaning,  purpose,  love, and will to continue,

As we group together in support and love.

Franticly Finding Fulfillment

You haven't heard from me in a while. It isn't because I haven't been writing but I have taken a break from writing about my mother and her progressing Alzheimer's.  I had to stop focusing on it and find time to explore other things, to find my happiness and joy.  There is so much to do, so much to experience.  I wake up each morning and dispense with my care giving duties as quickly as possible.  My brain is abuzz with all of the possibilities of the day.  I want to bake something for tea time.  I think about what I will invent...what sweet treat will bring a smile to my mother's face.  This excites me but then I also want to get my other 'have-tos' out of the way so I can write.  I NEED to write.  I breathe to write.  This is my passion, my love, my delight, my fulfillment.  But...   

I try to write about something else.  Yes!  I finish a dark thriller and am pleased with the result considering how distracted I am.  I write something quick and humorous.  It's alright, not brilliant.  I share deep thoughts that seem sad and unfocused.  I look deep within my psyche and explore my motivations.  They ARE sad and unfocused!  Oh!  It's excusable of course.  Just look at our world! What a mess.  The news is filled with ugliness.  People are in crisis, wars continue, stress and worry is rampant.  There are riots, murders, disasters.  I am being dragged into the darkness and sinking into its angry depths.

I try to claw my way out but there are a hundred interruptions.  I am never far from my mother's side.  I do not let the housework and business affairs deter me from my course.  The time is precious.  Each minute must not be wasted.  I am working, busy, frenzied with one eye on every motion, every expression on my mother's face.  Without realizing it the day is half over and I have only managed to write a few sentences while the sweet treat remains as notes on a scrap of paper by my mixer.  I am playing a game of Beat the Clock knowing full-well that my goals are unrealistic.  By the time the lunch dishes are washed and put away it strikes me that I am too tired to bake something.  I take a break intended to last just a few minutes but becomes an hour of listless time-wasting.  I watch a travel log with my mother and know that I will never get done.  

Lost hours, days, months.  Oh how precious time can be!

I shrug and engage in inner dialogue.  These days are the days to devote to other things, to moments that create memories.  Okay then.  How to do that and maintain some balance, some joy, some personal fulfillment?  I make a mental list: take 15 minutes of quality time with Mom.  Write down 5 happy thoughts...life affirming thoughts.  Do something productive that I have put off, like cleaning out a disorganized drawer, sewing on a few buttons,  straightening a closet.  Call or write a friend to maintain that human connection with the outside world.  Finish my day with at least a half hour of quality time with my husband: thank him for being supportive, kind, patient, helpful, steady, loving, and present.  

I feel a calm overtake me.  The brain slows and contentment begins to spread.  I am becoming centered and focused.  I realize that life without a plan is unsettling.  I begin the new day with a smile, a purpose and joy.

We All Have Buttons!

I haven't written anything in a while.  There are two reasons.  The first is that I have been on a mental vacation (meaning I was suffering from writer's block and needed to take time away from my laptop to reorganize my thinking) and the other is that I was feeling overwhelmed by negative thinking and needed an attitude adjustment.

Yesterday I finally emerged from the other side of the dark cloud and feel like I can finally talk about what has gotten me down.  Obviously it goes without saying that having to care for someone with Alzheimer's is going to create some negativity but this was much worse than I had previously experienced!  I realized that all of the soul-searching and self-realization had scraped away the layers upon layers of emotions, experiences, and memories to get to the core of my emotions, thus leaving me emotionally vulnerable and raw.  My mother was doing and saying the same things she had always done but now, suddenly she was pressing all of my buttons and causing huge reactions within me.  I was bristling over and sensitive to the very things I was willing to ignore or brush off a few weeks earlier.  I was angry over things that shouldn't have bothered me but a small comment would elicit a memory and a resentment, an embarrassment or a frustration from my childhood -- something I would have repressed at the time because I was always the good little girl, the perfect daughter, the well-behaved, well-performing child.  My mother and father expected me to be perfect and so I was!  I didn't realize the toll it took until just recently.  Inside of the perfect facade was a rebellious child just screaming to get out. The other day, Mom said something and without warning it caused an internal revolution.  I was so angry, so upset, so uncontrollably miserable I had to walk out of the room to allow my 'grown-up' to take over and steady me.  Taking five deep breaths I began to meditate and engaged in an activity, that one thing that I know works well: I focused on the deepest part of my being -- that part of me that is what I consider my core.  It is my essence...the 'Me' that has no  emotion or memory, the living being that is who I was on the day I was born, the Me that knows nothing of anger, fear, rage, frustration, impatience or happiness, joy, fondness...no positives and no negatives.  It is  my energetic self.  When I reach down and find that part of me I notice something amazing.  There is something there even though I feel like I am floating and feeling nothing, I am aware of a feeling that washes over me.  It is WONDERFUL!  What is it?  I call it love.  It is pure, simple, and beautiful.  It is self-love, other love, universal love, God love.  It is now, and it is eternal.  It goes hand-in-hand with mindfulness and leads to an inner peace and a certain connectivity with everyone and everything.  (Does this sound too New Age, too Old World Hippie WooWoo?)  Well all I can say is, "Try it!"  It works wonderfully.

I am sitting at my laptop smiling and calm right now. I know that something is bound to happen to set me off again but for now I am in that loving place, that calm connected place.  There is nothing better.  My mother doesn't realize or notice the changes in my attitude but as I move through the day I am painfully aware of those times when I am short or brusque with her.  I am so much happier when I can speak kindly, gently, and patiently.  Thank Goodness I have the opportunity to perform this simple exercise that makes so much difference. 

Magical Double Rainbows and No Photos!

The other night I left a meeting in haste as the promise of more rain loomed in the distance.  The train of storms had already unleashed some heavy showers that had drenched the parking lot with deep puddles and streams of water in the bordering gullies.   Dark clouds hovered above and all around.  Hues of deep gray and purple were sprinkled with lighter gray wisps that moved rapidly across the sky.  Jagged lightening strikes were visible in the distance and low rumbles followed like angry beasts threatening to attack.  

To my left was the large golden orb of the late evening sun hanging low on the horizon.  As I drove out of the parking lot it occurred to me that the sun's rays were in perfect alignment with the rain shower to my right.  I strained to look past the buildings and trees that obstructed my view.  All at once, I could see it shining high above -- a double rainbow! The two splendid arcs attracted not only my attention but the myriad drivers along my homeward route.  I saw many who were paying little attention to their driving which made me all-the-more attentive to the road.  With eyes straight ahead, I grappled with the contents of my handbag until I was able to extract my phone and access the camera.  Using  an extended arm I shot photo upon photo hoping to capture what my eyes were briefly glimpsing in between traffic lights, oncoming traffic and other pressing items requiring my attention.  Whenever there was a vista there was no place to pull over and when there was a place to pull over there was not a good view.  Alas, I resorted to the haphazard 'point and click' approach that netted uncentered, unfocused, and out-of-frame photos of clouds, sky and sometimes a bit of color in the right hand corner of the shot.  When I came home I sadly erased the photos from my phone as I recounted to my husband just how magnificent the double rainbow had been.  

I often miss photographing the most spectacular moments in nature, having to relegate the images to my memory.  So it was with the double rainbows that stretched across the sky with vivid hues of pinks, purples, violet blues,  yellow greens, and orange reds. Oh how glorious to see the birth of the multi-hued refracted water droplets  as their colors grew and merged, blended and dipped.  At one point I came to the top  of a hill.  The full spectrum of colors and arcs emerged from the road to the sky and down to the horizon on the other side.  I literally gasped with a sense of awe and wonder. 

I consider this today as I look at the gathering clouds with nowhere to go, no meetings to attend, and my full attention on the sky.  Perhaps today I will experience that exact moment when the sun bursts forth from stormy clouds just in time to create the magnificence of the perfect rainbow.  More likely I will have to satisfy myself with memories and words on a page.  How sad then that I lack the command of flowery descriptions that paint the perfect image in a reader's mind.  Might it be easier to find  photo of a rainbow on the internet and pretend that it was mine?  This I shall do, providing nothing more than a hasty apology and a guilty grin.

Top of Form

Bottom of Form

Bless Her Heart and Pass the Vodka

While my mother's brain diminishes in its functions, I stand witness and write down my own observations.  I feel like I am chronicling the slow demise of my mother; and at the risk of sounding light-hearted, (which of course I am not) I do find that I am more and more inclined to laugh about her...ehem...antics.  I don't want to make fun of how difficult this transition is.  It is awful -- really, really awful!  It's just that when I can't take it any more I turn to humor.  I call a friend and recount something that has driven me over the edge and together we laugh.  "Are you okay?" she asks.
"As long as I'm laughing you don't need to worry.  If I stop laughing you'll have to come rescue me," I warn.

Today, Mom was so disoriented, so mindless, so without purpose or thought that I was being driven totally crazy.  It's not too difficult for me to reach that state these days.  I feel like that Edvard Munch painting, The Scream. I am a short fuse on a Roman Candle.  I recognize that and try really hard to stay away from situations that will set me off.  But how does one do that when one is caring for an Alzheimer's patient? 

As soon as my mother awakened I knew that there was no thought process.  I could tell by the way she greeted me with a certain formality, a certain lack of recognition that told me she was somewhere else; that and the fact that her panties were in her walker and she tried to put her legs through the sleeves of her blouse.  At breakfast she ate mindlessly and then stood up, grabbed her walker and went outside to the screened porch.  Normally she joins us in the family room to watch the morning news so this was a departure from her daily schedule.  I watched from the family room and saw that she was staring off in the distance.  I walked out and turned on the overhead fan to cool off the porch.  Within a minute she was back up and inside.
"What's the matter?  Is it too hot outside?" I asked.
"No," she replied.
"You weren't outside very long," I commented.
"Oh.  I just wanted to see what was going on outside," she explained.
"Well was there something going on?"
"Oh yes.  There was lots of activity; people going in and out, stopping to talk."
"Hmm, I don't see anyone."
She looked out the window and went back outside. Five minutes later she was inside, walked to the front door and circled back to the porch.  The whole day has been like that.

I gave her paper and colored pencils asking her to draw something for me as a way of diverting her attention or engaging her in an activity; but all she did was scribble back and forth on the paper.  I asked what she was drawing and she told me, "Nothing.  I'll let you know when I decide."  I could hear in her tone that she was bothered by my interruption.  Okay then...fine.  I walked away and did the dishes.  She was back up and sitting at the kitchen island.  Back and forth all day, she followed this routine until I finally asked her what she wanted.  She answered, "I'm just sitting because there's nothing else to do."

Aha!  There it was.  I was a bad daughter.  I was not filling her days with things to do and she was horribly bored.  I felt awful.  I sat down and asked what she would like to do.  She didn't know.  In fact, she told me she didn't want to do anything.  I pushed on by offering  several activities.  No. Nope.  Nunuh.  Not interested.  So I just finally walked away feeling frustrated and vowing I would ignore her wandering.  At one point I closed the door to the porch a little too hard and Mom couldn't get back in.  My husband Skip walked over to open the door and shot me an accusing look like I had intentionally kept her from coming inside.  I protested loudly.  Not my fault!  (Or was there some unconscious desire to lock her out?)

The afternoon was even worse with the quick trips to the porch, the chair in front of TV, the kitchen, the front door and back to the porch within five minutes.  I began counting.  She walked outside 25 times between 1:30 and 3:00.  I was ready to explode when I began calling sympathetic friends.  "Listen," I told them.  "I need you to talk me down before I...I...self-combust."  Then I recounted my day so far.  As I spoke it was apparent that it was funnier in the telling than in the experiencing.  As I talked I peppered my descriptions with ample sympathetic expressions.  "Bless her heart," I exclaimed.  (Now I know that I have become a true Southerner!)  However, What really got me through the day was a promise of something that called to me from the liquor cabinet.  A bottle of Vodka had my name on it.  Oh hurry, hurry Mom's bedtime.  Would 8:00 never come?!  I licked my lips with anticipation.  In reality I knew that I would probably forgo the drink when the time arrived for me to relax after putting her to bed.  I talk a big story but am a 'light weight' when it comes to drinking.  I don't want to become an alcoholic (or maybe I do.  I'm not quite sure yet because 8:00 hasn't yet arrived.)

I was prepared to be angry until Mom's bedtime but suddenly Mom 'woke up' from her oblivion.  She was watching a travel log and I asked her a question about a bird they showed.  She sat forward and commented that it was beautiful.  Suddenly she was listening to the narrative.  The program moved to Norway and she turned to me saying, "Look!  The Fjords are so beautiful."  And, "Oh my.  It looks so cold."  She told me about a certain city, Bergen, Norway and said it was a big city.  She was paying attention in a way that she had not in weeks.  What?  HUH?  This is the kind of stuff that keeps me laughing, upended, and well, frankly a little insane.  Along with the litany of other complaints about care giving I can now add that it can lead to insanity or maybe just alcoholism.  As I write this now, I grit my teeth and repeat my mantra, "Bless her heart and pass the vodka."

Repetitive Days

She sits at the counter fingering her food.  My mother...devoid of understanding of what she is eating.   She takes a small bite of a piece of toast held at the tip of her fork, then picks up some cottage cheese with her fingers.  We correct her, telling her that the toast is a finger food while the cottage cheese is not.  This confuses her and we see her brows knit together as she unsuccessfully tries to comprehend what we are telling her.   I walk away from the kitchen shaking my head, trying to clear the thoughts that cause my impatience, my temper, my frustration.  Returning to the kitchen I see that Mom has now lifted the toast holding it like a sandwich in both hands.  Her thumbs and forefingers grip the bread while she extends her pinkies and fans out her remaining fingers perhaps envisioning herself as a person of refinement.  She is a picture of contradictions; old characteristics mixed with new habits, bad manners, good manners.  Deep within her the need to be the lady of old, with perfect hair, perfectly buttoned clothes, impeccable etiquette, everything just so.  But Alzheimer's has consumed her brain, her memories, her motor skills.  She can no longer button herself, remember to throw a used tissue away in the trash, or wash her hands.  A cloth dinner napkin becomes a Kleenex for her nose and then is folded neatly beneath her plate at the end of a meal.  Meanwhile I bluster and blow, complain and bellow.  I run interference for fear that others will be disgusted by her behavior while knowing that it is I who am the most offended.

Mom is not the person she was, nor am I.  What used to be an amazing mother and daughter relationship has now become a care giver and care receiver arrangement.  My feelings of daughterly love and devotion have diminished to custodial efficiency.  I am saddened by this but also accepting and understanding of the process.  It has taken a while to arrive at this conclusion.  For each of us who is in that position, we fight the tendency to look for a glimmer of hope when our loved one remembers something.  "Ah!  she's not so far gone after all," I say to myself.  Then a moment later, when my mother becomes oblivious to her surroundings I remember how the disease toys with all of us giving the afflicted small moments of awareness before casting them back into the abyss of forgetfulness.

The newest stage: she rocks in her chair on the porch from morning 'til night.  She closes her eyes and sleeps for fifteen minutes awakens, stares at the sky and the trees for a few minutes, then falls asleep once more.  Her days go by, sadly dragging on while she loses more and more of her worldly attachments.  I regard the quality of life and wonder about the cosmic purpose.  Is it that we are not ready to lose her...to let go?  Is it that she cleaves to life for some unknown reason?  I feel the presence of ancestors surrounding her now.  They are at the ready to lovingly assist her on her journey as she transitions.  I hear her speaking with them at night.  Who are these departed ones who crowd her room?  

It is time for tea and a freshly baked scone.  The sweet fragrance of warm chocolate and orange awakens her and excites her taste buds.  She mouths the scone with enthusiasm dipping bits into the clear liquid; knowing only that it is sugary, forgetful that it is something she has had before.  "Remember when you used to bake scones?" I ask.

She shakes her head bewildered by the question.  There is no memory of her baking, of her life, of her actions.  Forlorn, I retreat indoors to continue working while I keep an eye on her through the windows.  She becomes restless and stands up, moves around, circles inside then back out.  Caged within herself she doesn't understand what is happening.  There is no logic, no interest in doing anything (though I offer activities that she declines). There is just motion and repetition, a continuous loop of awakening, moving, sitting, sleeping, eating, sleeping , awakening, sitting, moving.

And then, just as I feel that the hopelessness is too overwhelming to bear, there is the smile, the comment, the engagement.  "Oh, what is it you just said?" she asks with interest.  She leans forward with interest as I repeat myself, and then comments back;  intelligible words, words that make me laugh.  I am grateful for the moment and embrace it...cherish it, unsure of when (or if ever) there will be another.   How much longer does she have here on Earth?  How much do any of us have?  We tell ourselves to make the most of the moment...this moment.  And so, in this moment I remind myself to be grateful that Mom uses her fingers to pick up her cottage cheese and her fork to pick up her toast.