All roads lead to "Winks"....

She picked us.  We were newly married and searching for a third member to the household.  She clambered over and onto her fellow litter mates as she made her way out of the bed and into our lives.  She was a little thing....all orange fluff and whiskers.  She curled into my neck, sitting atop my collarbone for the ride home.  A spot she would crawl up to every evening as slumber took us.

At her first vet appointment, we were given the sad news that she was positive for Feline HIV.  She had a 20% chance of making it out of the first year.  We were advised to take her home...love her and not expect too much.  We spoiled her on liver and shrimp cocktail.  By the age of three, though still testing positive, the vet declared she would probably outlive us all.  An indoor cat due to her illness, she became adept at hunting in the garage and cellar.  She has gifted me on many occasion with mice, chipmunks,  a startled frog and even a baby snake.

She had a two hour head start yesterday before we knew she was gone.  As we scoured the woods behind the house, accusation and guilt lay heavy between us.  Like a bitter pill, the words stayed at the tip of our tongues ....we knew it would be so easy to say something we'd later regret.  We spoke in hushed tones about the bear tracks and fox scat we saw on our search.  We looked into the trees and amongst the roots at their base.  Our guests were subdued, not quite sure how this would all play out.  "So this is is how it ends I thought"...what starts out as a typical day can so suddenly change.  The day my father died, I called the house to invite him for dinner, not knowing he was already gone.  I couldn't remember our last hug or I love you.  Each time I visit my mother, I say good by and tell her I love her as though it is our last visit.  Most days you don't wake up thinking to behave with others as though you won't see them again.  Maybe hugs, I love yous and shrimp for breakfast need to be part of every day.

Darkness settled in last night.  By this time, she had been gone a good 4 hours.  Tears had already been shed.  We were trying to figure out how to do Christmas Eve in spite of this, when a bump on the back door brought us up quickly.  She came in fast without a backwards glance and went straight to her bowl. We cheered and laughed, the mood suddenly lightened.   She ate voraciously for a couple minutes, looking over at us from time to time as if to say...."just wait, have I got a story to tell you"!  Last night she made her way up towards my collarbone as I drifted off to sleep.   Merry Christmas....

Dear Santa.........

I spent the weekend after Thanksgiving attending the 90th birthday party of my husbands cousin.  Beautiful by any standard, her smile lit up the room as she moved gracefully from person to person acknowledging their presence and the memories they brought to the table.  She reminded me of our last conversation which took place over four years ago.  I had forgotten, but her words brought it all back.  The other cousins were there....all in their 70's, 80's and 90's.   One just returned from a trip to Scandinavia, another is planning a bicycle tour in Europe and the oldest by far is 92 years young and always has a warm hug, big smile and asks immediately about my mother, my life in New Hampshire and how are those college students treating me?
I get bogged down in the little picture far too often.  I visit my mother and only see the woman she isn't.  The blank stares when I hold her hand, her loss of conversation and the clear forgetting of holidays.  Meanwhile, the staff adore her and care for her in ways I cannot.  She seems content and is in reasonably good physical health.  The staff interact with her as though she was a full participant.  They tell jokes, sing songs and even do a mean turkey strut across the room.  This is the big picture.  I was reminded of it this weekend at Cousin Nancy's party.  Life moves forward, just not always the way I imagined it would be.  I'd like to ask Santa this year for "one more day"...lunch perhaps with my mom and my dad....just for old times sake and to get a few things off my chest.  That'd be tough even for Santa, so I will be satisfied with appreciating the "big picture" more and letting go little by little of the sadness that the "little picture" brings me. 

Where we are....

Sometimes it is a note handed to you at the end of session, often an email, a text, a phone call or a look full of emotion from across the room.  It has been a week of paying attention and bearing witness as stories unfold.  I watch my staff hold it together for the sake of others.  My mother's staff holds her anguish and keeps her safe as the sun drops and days get shorter.  Sundown.... not an opportunity for sunsets as we assume.  For some, a time of fear, confusion...a journey to dark places.


My mother has no words anymore to communicate with.  Her look as she held my hand last evening spoke volumes.  She had so much to say and I had no where I needed to be.  It was our best conversation in many months.


Communication happens in so many ways.  We would be foolish to rely on words alone.  In the quiet space between one another we hold each other in safety.  Finding our voice and giving voice sometimes has nothing to do with speech.

Patterns

My mother has been in her new place for two months now.  We have each established our patterns, she with her daily rituals and me with my visits.  Our visits are largely silent.  She sleeps much more since the move and it is a rare day that I catch her with eyes open.  Angus has memorized the sound of my jingling keys and eagerly greets me upon entering the building.  He follows me to her room, anticipation of a treat causing him to drool all the way down the hall.  My mother pays no mind to Angus or to me for that matter.  I touch her hand softly and kiss her forehead.....she eyes this stranger who dares get so familiar and utters a puzzled thank you.  However polite her thanks is...it cuts to the bone.  Our pattern is not without it's sorrow.
I have taken up knitting since her move.  I know only one stitch and how to make a scarf.  I now have a drawer full of future Christmas presents (sorry about ruining the surprise), each one knit in her presence and held to her cheek for a small gift of texture and softness.  When I cleaned out her house two years ago, I found drawers full of my clumsily made cards, pot holders and artwork from my childhood.  I offer up my scarves as continued proof of our relationship.
She is treated well in her new place.  When they enter her room to change her diaper, I flee to the hallway.  Ashamed at myself who cannot bear this ritual and sadness for her that it is so.  I cast off my hopes of her recovery....I cast on a tougher outer shell.  Welcome to the new normal.

For Today...

Eyes open, a few words that didn't make much sense but pay no mind to that....she reached for my hand to hold and gently brought it to her lips for a soft kiss.  It doesn't get much better than that.  Happy Sunday morning!

Taking Care........

I slipped in for a quick visit after dinner last night.  I'm back to work for the academic year now,  so will visit more in the evenings than the mornings.  To my surprise, my mother was in the group area with eyes open.  My mother is one of very few residents with Alzheimer's.  Her peers for the most part are in residence due to age, mobility and being alone in the world.   I am conscious of their scrutiny when I come to visit....they watch my interactions with my mother carefully.  Few ever speak to me but 12 pairs of eyes often speak louder than words.  I wheel my mother out to the porch for what is perhaps the last warm evening of summer.  The porch area looks over the quiet neighborhood and the nearby elementary school playground.  We hold hands, she and I, and I am rewarded with an occasional squeeze.  She does not speak, but on three occasions she opened her eyes, looked out over the yard and then apparently overwhelmed with the whole view, slammed her eyes shut.  I suspect she is retreating further away as the world around her becomes more and more confusing.  We sit awhile longer and I eventually wheel her back into the group area.  There is a spirited four hand game of cards in the corner, a small group watching Jeopardy and several residents giving me that careful scrutiny I mentioned.  Apparently I have passed the test I did not know I was taking.  The card players stop their game as the room watches me say goodnight to my mother.  It's always the same, a kiss on her forehead, a squeeze to her hand and an "I love You" in her ear.  I back away ready to depart and about 12 residents in unison tell me "she opened her eyes today dear, don't you worry we are taking good care of her".  Farewell and drive safe wishes are called out as I made my way to the door.  They have her back and apparently it seems ....mine as well.

Save Me

My mother moved to her new place 3 weeks ago today.  She has the equivalent of bed sores on the back of her legs, probably from so much time in a wheelchair.  She has been in bed a great deal since the move so as to give her legs a chance to heal.  Until yesterday she has been keeping her eyes closed and I did not know if I would ever look into her eyes again.  The animals have been keeping watch.  Angus does an hourly walk through and sometimes even sprawls on the floor next to her bed.  I arrived one afternoon last week to find a tiny dachshund stretched out along side with his chin on her shoulder.  I do not know if she knew of his presence.  Yesterday while I was there, she opened her eyes for about 15 seconds, seemed to be fretting about something and ultimately grabbed my hand and whispered..."save me".  I stroked her cheek, held her hand and her eyes slowly closed again.  

Is this our next step in this process?  She is retreating inward more and more each day.  Each new decline, a mystery revealing itself.  

I make an appointment with my lawyer to redo my will, my health care directives and my end of life wishes.  I cannot save her, but perhaps I can save myself.

Angus

This is Angus.  He watches over each resident.   He enters the rooms quietly but purposefully, his dark gaze taking in everything.  When he appears satisfied that nothing is amiss, he departs,  only to return at least twice more during my visits.  My mother still sleeps, eyes closed, fist clenched in her lap.  I hope for a spark of life, of some indication she will join in my presence.  Till then, I'm fairly certain Angus will continue to keep watch.

This is Buttons.  She, like my mother, is a newcomer to the nursing home.  On her first day, she curled up in her chair and refused to open her eyes or deal with other life forms in any way.  Even offerings of  chocolate  tuna treats, weren't enough to get her to open her eyes and participate.  I pleaded, I cajoled, I held her hand paw...all to no avail.  Like the two year old who thinks she is invisible if she closes her eyes, Mom Buttons remained obstinate throughout her first evening, even going so far as to spit out her medication at one point.  I left in the evening hoping for a change in attitude by morning.

Eyes open, one might even suspect a smile on her little face.....the second day brought a change in attitude.  We retired to the sun porch, in full view of the bird feeders and children next door at play.  Is there a huge change?  Not yet....but as one curled up in the lap of the other, things were looking up.

One Voice

I am my mothers voice.  I make all decisions for her as she cannot make her own.  This is not a role or job I ever wanted.  Fortunately, I have done better for her than I have at times done for myself.  I am an only child and therefore have no one to consult when acting on her behalf.  Sometimes it's a blessing and other times a curse.
I am moving my mother to a new facility.  In the space of five years, she is months away from exhausting her entire life savings.  The quality of her current placement has been on a downward spiral for several months.  The outstanding staff members are leaving only to be replaced by people who don't share the same affection or respect for those whose care is entrusted to them.  I dread the move and the subsequent disruption in her functioning.  I feel guilty already but logic tells me this move is necessary.
She is moving to a 33 bed two story Victorian ten minutes from my home.  I travel an hour one way currently to visit her.  Is part of my decision based on convenience for me.......absolutely.
I did mention I'm tired...right?  There is a resident black lab dog who goes by the name Armando (more on him later) and two furry felines who own the place and whatever beds they happen to claim on any given day.  It sounds good.  Why does this feel so difficult?  I have been second guessing myself for two days.  I have interviewed other facilities and found them lacking.  In short, I have done all I can do to assure that she goes to a good, caring place.  The thing is.....no matter how clean, how respectful, how caring, cats or no cats.....I would never want to be in one of these places and the fact is, neither would she.

Since you asked......

"How is your mother?"  I get asked this question at least twice a day.  What is it that people really want to know when they ask this?  Shall I tell you that she prefers a lollipop to my hand in hers.....that she stares through and beyond me with no sign of recognition.  She wears her food down the front of her like a new blouse and a good day is when she takes in 4 spoon fulls of whatever it is they are serving.  She is shrinking it seems.  She reminds me of a tiny bird with a map of blue veins criss-crossing just under the surface of her skin, her pulse faint,  but present.  Well meaning friends tell me it is too hard to see her in such a state and therefore cannot bring themselves to visit.  I nod, not sure what to say.  I hear from staff that she is feisty at times.  I have not witnessed this.  She is living the life she most feared, though one can scarcely call it living.  I buy diapers by the case each month......she no longer even alerts staff to her need to void.

How is my mother?   The same........but thanks for asking.

"How are you?"  No one ever asks this of you in relation to your parent with Alzheimer's.  I am tired.  It is a bone weary mental fatigue that doesn't go away.  There is a moment each morning when I first awake that I don't have a mother with Alzheimer's.  It only lasts a moment before the evenings cobwebs clear and reality comes back....but it is my favorite time of day.  I walked in to my mothers room the other afternoon as they were changing her diaper and I had to walk out in embarrassment for her,..... at this indignity that would have devastated her at one time.  I stumbled to the parking lot and cried by my car for all that she and I have lost.  I went to a support group once and was the only one who showed up.
I watch the husbands and wives on her unit and go home and cry for them.  I hold my husband just a little tighter praying that this disease doesn't come into our life.  I grieve over and over.  My grief now is all about the loss of the woman she was.  At her death, will that change?  Will I finally just grieve the loss of my parent?  When I walk onto her unit and find that another resident has died, I think to myself..."good for them."  They've been released and are free.  I will probably have to move my mother to another facility.  It seems she has defied all actuarial tables and has outlived her money.  They say the transition to somewhere new is hard and may cause a decrease in her functioning.  I don't know how any less functioning she can be.  How am I?   The same............ thanks for asking.

Born on the Fourth of July.......

My grandmother was a "Gold Star" mother for one week during WWII.  My uncle was killed by enemy fire in a snowy field in Germany, his dog tags taken from his body and soon after the knock on the farmhouse door no mother wanted to answer.  During a recovery effort in that same field 3 days later, movement and a thin pulse were detected from my uncles body and once again my grandmother answered the door to an Army chaplain.  My uncle would be 88 this year.  He was born on the fourth of July up in the great north woods, lovingly adored by his older sister Mary....my mother.                        

My uncles life was far from ideal.  Being left behind was a common theme from age 3 when his father left for good, leaving a young wife and two small children behind.  During the Depression years, my grandmother moved off the farm into town to waitress at the local restaurant.  Leaving my uncle in the care of her brother on the farm, she took my mother with her.  His wife left him shortly after the birth of their second child and he returned to the home of his mother where he stayed until his death.  I do not know what he was like before the war but the uncle I knew was loud, angry and prone to yelling.  If he was in one room, I made sure I was in another.

My mother called him just about every day and worried about him all the time.  Though the difference in their age was only a year, she took her role of big sister seriously.  She frets about him still and in those rare moments when she does talk, it is to ask after her brother and wonder where he is.  I always assure her he is fine and if she's patient, he'll show up soon.  My mother was looking for him this week and her love for him never so evident.  She'll be watching the fireworks Monday night and I wonder if they will jog her memory of a certain young boy born on the fourth of July.  Happy Birthday uncle.

The Language of Memory

Here is my Friday afternoon science lesson....apparently, in brain scans, music fires up the medial prefrontal cortex and triggers a memory.  The memory runs through the head and brings images of places, people and incidents to mind.  Strong responses to music...ones that trigger our most pronounced memories....elicit the greatest activity on brain scans.  That is why stroke victims can access lyrics before they remember language and also why Alzheimer's patients can still remember songs from long ago.

My mother is mostly silent these days.  It is hard to determine what is going on in her mind.  My wish to communicate with her and the loss of our communication has been so hard to sit with.  I decided to make her a song list on my ipod and bring it in with earbuds.  The songs elicited strong feelings within me as many were songs we sung together in my childhood.  I had no illusions about this endeavor but knew the outcome if I didn't at least try.  I held her hand, turned on the music and watched as she closed her eyes and smiled gently, her head moving ever so slightly to the music, a memory perhaps unbidden,  but present none the less.  Today was a good day!



                                                      Mary's Playlist

• My Darling Clementine
• This Land is Your Land
• Tennessee Waltz
• How Much is that Doggie in the Window
• America the Beautiful
• Your a Grand Old Flag
• Yellow Rose Of Texas
• Crazy (Patsy Cline rendition)
• God Bless America

This ones for Kate....

I'm currently 40,000 feet above the earth flying towards the West coast of Florida.  Truth be told, it feels like we are hurtling willy nilly through space, out of control and destined for a hard landing.  Needing a respite from the cold rainy spring which is New Hampshire these days, I'm off to visit a dear friend.  You...my loyal readers probably need some respite from Alzheimer's.  I know I do.
Today I write about flying or more to the point, my utter and complete abhorrence of it.  I worked at an aviation college for five years and sat across from many a would-be pilot.  Suffice to say, in spite of many questions and well spoken answers, the whole concept of how this big air bus stays up is lost on me.  I'm just glad it does.  I am a hyper vigilant passenger.  That's my head you see sticking out in the aisle completely focused on air mask and inflatable cushion instructions.  I count the rows to the nearest exit in case the lights go out and I am forced to crawl towards safety.  I memorize this number and quiz myself at least twice before landing.  I never volunteer to sit at an exit.  I can't commit to selflessness in the face of abject terror.  It's fight or flight for me!
Though not a superstitious person on the ground, when it comes to flying...all bets are off.  I never get off when they ask for volunteers even if it means a free ticket to somewhere else.  That next flight they put me on could be my undoing.  I also have a glass of tomato juice as soon as the attendant comes round for drink orders.  This is the only place I drink tomato juice as for some weird reason, I consider it good luck.  I hate to fly alone and here I am today...solo!  Call me selfish, but if I'm going down...let someone I love be with me.
I am flying Southwest today and had forgotten that staff are trained in sarcasm and comedy.  In this setting, I can find no appreciation when the pilot calmly announces:  Ba Da Bing, Ba Da Bing, This Boeing is Going!!  Nor do I find humor when the attendant announces that we need to keep our seat belts fastened so that we don't roll on top of someone in the event of a disaster.  Not laughing folks....not at all, though the rest of the passengers manage some chuckles and I heard a pretty big guffaw down in Business class.
I take inventory of my fellow travelers.  An aging rocker with a battered guitar case, a Rod Stewart hairdo and what looks to be fine motor tremors in his hands sits across the aisle and a business traveler who promptly shut his eyes when I sat down is next to me.  There are a beautiful pair of red stiletto heels poking into the aisle about 4 rows down but that is all I have time to see before the pilot announces that we have arrived and will be on the ground in 15 minutes.  I wait for the tell tale noise that the landing gear are being engaged and cross my fingers that all will be well.  I know that friends and memories to be made are on the other side.
My mother loved to travel, loved to fly...she greeted each turbulent bump with an eye roll and a giggle.  I'd be wise to have some of what she was having.

With all of her best intentions

My mother was born in the small town of Columbia, about four miles from the Canadian border.  As her life in the southern part of the state got busier and fuller, she made the trip North fewer and fewer times.  Since the onset of Alzheimer's, her trips home exist solely in her mind and imagination.  She is a frequent traveler to all of her old haunts and on any given day asks after one or more ghosts from the past.  The next to last time she went up was for her 50th class reunion from Colebrook Academy.  I drove her and we spent an entire day and night immersing ourselves in a walk down her memory lane.  The last time we went up, was to spend Christmas 7 years ago at The Balsams Grand Resort.  Clearly, unbeknown to us at the time, Alzheimer's was the uninvited guest, for upon arrival for a 4 day stay my mother had packed a toothbrush and socks.

So it was that yesterday morning, I packed my car for the long trip ahead, picked up my trusted friend and road trip buddy..Alice, and we set our sights upwards to the Great North Woods.  This trip I told myself at it's inception, was for my mom.  I would visit her memories, visit my grandparents and hers and bring her intentions, her love and the girl she was... back home again.  Alice and I took up the front seat, she in charge of music selections, me being the tour guide....laughter hit by the first mile marker.  I did not comment on the ghosts joining us in the back.

With age, the family dairy farm had lost much of it's splendor, not to mention the barn.  There in the front parlor, my mother was born so tiny they had to place her by the wood stove for the first week of her life to keep her warm enough.  Flash forward twenty eight years and she is a beautiful bride marrying my dad in the same front parlor.  We lunch at the restaurant where my parents met more than 60 years ago and while time has changed all things, they still serve more than 7 choices of pie.

Our final stop is the cemetery at the north end of town.  I find my great grandparents quite by accident.  Though I have no memory of these two, I can share many stories of their rich lives.  It takes a little while,  but finally I find my gramma Mimi and papa John.  I tell her quietly, that my mom asks for her every day and looks for her in every room.  I pause here....so many good memories of these two people.  It is no wonder to me that my mother seeks them out, day in and day out.  So I carried my mothers best intentions, her love and stood in for her yesterday,  since she could not go herself.  I told myself at the inception....this trip is for her.....but really, this trip was for us.  I will visit her today and share my adventure and with it my best intentions.

Not My Best Mooment

I turned 51 a few weeks ago and three days after that my mother turned 89.  Common sense and reality deserted me in my 51st year and so I went to visit my mother on both days filled with expectation and hope.  On neither day would she open her eyes and look at me.  I sadly took her presents back home, to save for a day when she was more here than there.  I spent time with her last Saturday.  I ended up opening her gifts, holding them up close for her to see, putting them away carefully for another day.

As I usually do, I put my hand on hers and on this day she was having none of that...she recoiled and gave me a nasty look as she leaned forward to scratch me.  I ducked, just barely.   In the next moment she called me a cow!!  In the moment after that, I stuck my tongue out at her...yeah, you heard me.  Not my best moment.  It occurred to me as I was sitting across from her, in all the wisdom of my 51 years with my face contorted and tongue a-hanging.... oh yes siree, I'm all growed up.  She stared blankly at me for a long moment and then blinked very slowly as she turned her head and looked away.  As always was the case, it seems she had the last word after all.  I shook my head, uttered a feeble mooooo and ambled from the room.

4/9/1922

HAPPY BIRTHDAY MOM

It has been so long since I last saw this woman pictured above that I forget what she was like.  I haven't been writing much, mostly because I haven't had anything to say.  I can't find my sense of humor anymore when it comes to Alzheimer's and it feels like all my thoughts about it are pretty maudlin.
Many of the people that live with my mom have been dying lately....some of them I have written about here.  My mother doesn't say much anymore or at least is quiet when I'm around.  I spent a couple hours with her last Saturday morning and the only thing she said in two hours was,  "Enough".  I don't know if it was a statement or a question, but I concur.

When we started this journey, I think I believed that people die when they are finished learning what it is they were supposed to learn and likewise when they were done teaching others what they were supposed to teach.  I'm not sure anymore.  I've learned some powerful things about myself since my moms illness took hold but not clear if she was the teacher or the disease was the teacher.  My mom has learned to let others care for her....to be less independent, certainly something she cringed at in her previous life.  As we move forward, I find myself believing less and less in making meaning out of this process.  It's awful, it sucks and aside from the death of my father, it is the worst thing I have ever witnessed or experienced.  Enough said!

My Mother's Daughter

I put the saran wrap away in the fridge the other night.  As soon as I shut the door, turned around and saw my husband looking at me with a funny look on his face....I knew.  I walked into a room the other day with great purpose only to find that I had forgotten what my mission was.  Sometimes, and this is no lie, I call my cell phone just so I can find it.  Am I becoming my mothers daughter after all?  We both love shoes, vacations and sappy chick flicks.  Unlike my mother, I have not recently hallucinated any men in the tree in my front yard.  Time will tell I suppose.  I have certainly thought about our genes from time to time,  though I must admit that I believe that as we all live longer...we will all start howling at the moon at some point.  I exercise my brain, I stopped smoking anything illegal in 1980 and I surround myself with family and friends that are at least half as funky as I.

I'm thinking hormones are to blame for the saran wrap and other questionable acts.  Hey...works for me.  Now, if I could just find where I parked my car...........................

Sundown

Sundowning refers to the late day confusion that many folks in care facilities experience at the end of the day shift.  Afternoon shadows appear like frightening black holes in their path.  Many will not walk over a shadow or will stand fearfully at its edge till someone helps them move along.  Walking onto my mothers unit at this time of day is to walk into chaos of the mind.  A schizophrenic feast of disorder and delusion.

Ben is on his hands and knees in the corner, staring intently at the wall, while Ralph screams for help insisting he is dying.  When he doesn't get a response from staff, he starts singing dirty Irish limericks.  Tilly implores me to help her as I pass by her wheelchair....she insists her legs have been broken and can I please help her leave.  In the TV room looking like a picture of normalcy, Agnes sits alone watching her show.  It's only when I see that she is watching Glenn Beck that the true horror of Alzheimer's is revealed.  I have a seemingly normal conversation with George about his love for dogs, especially his collie.  After a 5 second pause, he reintroduces himself and begins the story again.  Roast pork and stuffing were on the menu this evening and by all appearances, on every ones face and lap as well.  The residents are lined up in rows in the rec room as meds are passed out.  In a short while, staff will ready each one for bed.

I find my mother amongst the crowd.  Tonight, I am someone she knows.  Her face lights up and she pats my hand, expressing concern that I might be cold.  I reassure her I am fine and she offers to make me supper.  I don't get a sense that she knows I am her daughter, but I know that I am someone she loves.  She beseeches me to take her home, so I push her around the unit which seems to appease her need to go.  When finally I stop, she asks if I will return soon.  I promise to be there when she wakes and whisper a soft "I love you" against her cheek.  As I always do when leaving, I turn back for one last look and tonight am rewarded with a soft kiss that she blows my way.  Tonight I was someone she knew.

Saturday mornings.....

My mother always used to say how much she would like to get a manicure.  Being a right arm amputee, it was not something she could do for herself.  Being also a frugal Yankee, she balked at the idea of paying full price but was too shy to ask for half off.  I don't know why a manicure is never something I offered to do for her.  I suppose we spent so much energy trying to get along that mom and daughter trips to the spa just weren't part of our reality.

Saturday mornings now,  are "spa" mornings for mom.  I pack up my polish and lotions and spend a couple hours massaging her hand, manicuring her nails and finishing her off with a polish.  This weeks shade is "Cherries in the Snow".  It's a little sassy and quite a bit fun.  She smiled with pleasure as I did my work.  I chattered on about my crazy work week asking her opinion here and there.  She's very good with confidentiality.  She keeps my secrets and admissions close.  She's pretty quiet today, doesn't have much to say,  which I suspect is her way of telling me, I should have kept my mouth shut this week.  Mom knows best........just one more lesson she continues to teach me.

"ADRIFT"

When I arrive this morning, I find my mother still in bed asleep. A petite miniature of her former self, she looks adrift in a sea of pillows and blankets. I announce my presence quietly, my hand on hers, but she does not waken or open her eyes. That she dreams is obvious. Her face grimaces and she murmurs aloud.....even in slumber anguish registers on her face.

It is my hope that her dreams are clear, with none of the confusion that consciousness brings, each frame moving into the next like a home movie. We know she dreams of family. Upon waking she usually calls for her mother.

At one point she grabs my hand, still with eyes closed, and brings it to her cheek where she rests it in her hand. This small moment of normalcy is everything...is enough. Eventually, I take my leave and once more place my hand on hers. With eyes closed, she grimaces and tosses my hand away, grabbing the blanket over her shoulders as she rolls away from me. "Pammy", she says, her voice tired and filled with frustration, "you know I'd do anything in the world for you, but why can't you go to bed so I can get some rest?" Sweet dreams Mom as I tiptoe quietly away.

Places In The Heart

Every day, Jim, Milly, Charlotte and Jan come to the unit to visit their spouses. In total there are 48 people on my mothers unit, a fairly even division of men and women. These four are the only living spouses out of the 48. Sons and daughters show up on holidays and the occasional weekend. I am the exception to the rule, though unlike these four, I do not go every day. We know each other well and always stop to inquire, first about each other and then, about our loved one.

Jim's wife sits quietly staring at a place upward and towards the ceiling. She has not made eye contact in over 3 years and murmurs constantly to herself . Jim sits with her by the hour, holding her close....telling her about his day and asking after hers. It is the only time she does not murmur. Milly reads the Globe aloud to her husband. Though he has not spoken in several months, his eyes never leave her face. Charlotte, accompanied by her dog "Little Bee" brings frappes and other delights to her husband, who rarely opens his eyes but smiles gently when "Little Bee" sits on his lap and licks at his chin. He was a pilot once upon a time and perhaps behind his closed lids....he soars free. Jan's husband confined to a Hospice chair lies on his side, infant like. She fusses over him and keeps up an endless chatter. His time is near, though none of us speak this out loud. She drives 80 miles round trip each day to spend 6 hours with him.

I watch them when they enter the unit. I observe how their faces light up at the first glimpse of their spouse. Their smiles reach up into their eyes and they all lean in for a kiss. Love like this is the real McCoy. There is no imposter here. There are places in our hearts that are indeed big enough and wide enough for two. They can no longer access their love for us, but we carry it for them, carry it for ourselves. Places within our heart .

We've all met people over the years who refer to themselves as "military brats". I was an American Legion "brat". Both my parents were seriously involved in the American Legion and American Legion Auxiliary. Being an only child, they just brought me along with them to their meetings, conferences and conventions. My first play group was in the back of a Legion hall filled with WWII vets and their wives. I knew the Pledge of Allegiance and the Preamble to the constitution before I even got to first grade! Parliamentary Procedure was mastered by 6th grade and the correct folding of a flag....well, lets just say, I had that covered too.

Both my mom and dad were very patriotic people. My dad was in the Navy during WWII, a radioman on a submarine in the Atlantic. He always saluted when the flag was displayed, even when accompanying me to high school basketball games. Would I get embarrassed......absolutely. Did it stop him from standing and saluting.......NEVER!

I have been to 24 National American Legion conventions, in cities all across this country. I have seen 3 Vice Presidents and 2 sitting Presidents as well as Bob Hope and Don Ho . I have been a regular at the state of Alaska's hospitality room (think salmon and crab legs) and have closed the place at New Hampshire's hospitality room and all before the age of 15.

Did my parents miss important milestones in my life because their presence was elsewhere......yup. Did I find myself attending really boring meetings instead of a movie or play date.....yup. Have I sat with elderly WWI and WWII vets at the NH Veterans Home and held their hand while singing a Christmas carol.......yup, did that too.

My mother became the National Vice President of the American Legion Auxiliary when I was in college. She had risen through the organization since joining after WWII. My father rose through the state offices and later served on many national committees. For the two of them, it was always about service to community and service to the nations veterans.

The Legion was always a place that the best in my parents came out. While my mother no longer knows me, she recited the entire preamble to the constitution the other night. She was clearly in meeting mode and was trying to make sure the agenda was moving forward and that people knew what their assigned duties would be. I nodded, I made eye contact and in my way I let her know I would do what she asked. She seemed pleased by my cooperation.

Yeah, my mom and dad wore silly hats and were often pictured in the local paper leading the Memorial Day parade or the Veterans Day service. I know I didn't tell them at the time but....they did good.

The Spaces Between

It's been coming on for awhile now. Like all bad news, there is a certain amount of avoidance we practice to keep the reality at bay. The fact is, my mother can no longer hear anything. I've yelled into her ear, much to everyone else's dismay, but it causes not even a ripple to her. She looks at me in confusion and begins to guess what it is I might have said. She says thank you a lot and has become much quieter since her hearing has left.

I make my living by offering up words...sometimes they are words of comfort, solidarity, understanding and other times I use them to confront or bring to awareness something which has been hidden. I know that there are powerfully silent moments in the spaces in between my words. I've sat in that space, holding someone figuratively in that moment of grace and awareness. Those moments have always been anchored on either side by words. Without the anchors, what do I bring to the silence with my mother. I yearn for recognition, but fear that the silence will rob me of that occasional awareness on her part. I tried flash cards over the holidays but her reading and comprehension are fleeting at best.

It seems I have entered another stage of her progression with AD. My task, as always, is acceptance and letting go. Hope of recognition has spurred me on for months now. I fear I have become just one more face in her never ending day.....someone that shows up and holds her hand, combs her hair and strokes her cheek, always with a smile.

Ironically, words escape me now. I bring presence and love and hope that she can experience that in those spaces between.