With this Ring...... full circle

On the day that she died, I awoke in the predawn darkness and knew that I needed to go to her.  Angus greeted me quietly at the door and padded down the hall next to my side.  He took up a spot near the foot of her bed and within touching distance to me.  He would stay with us for the next 9 hours.

I did not know if my mom would die that day, but I knew this was no fire drill and indeed she would die soon.  Her breathing was labored and in fact, the first dose of morphine had been given by the time I arrived.  Her eyes remained closed, though she occasionally sucked on the swab of water I would offer.  We held hands all day.  People came and went, checking her breath, her pulse, her oxygen levels.  No one could tell me when,  but all agreed that was where we were heading.

My mothers wedding band had fallen off two years ago and I had been wearing it next to my own,  having promised her I would keep it safe and eventually return it to her finger one last time.  At four in the afternoon I remembered my promise,  and to my surprise it fit easily over her swollen arthritic knuckle.  I leaned in close and whispered softly that the ring was now back where it belonged.  I told her I was okay, that I loved her and that she could go.

At five in the afternoon her breathing once again changed and upon peeling back the covers that warmed our hands, I noted that her fingers and nail beds were a dusky blue.  It won't be long I was told.  I hung on to her hand and softly whispered how much I loved her.  Her eyes opened and we held our gaze....one minute.....two minutes....she closed her eyes, her breath's now 45 seconds apart.  And just like that....she was gone.

We had come full circle she and I....in so many ways.  Safe journey mom.

Mary

April 9, 1922 - October 26, 2012

"Our only answer to sorrow is to live.  To live backward,

remembering the ones we have lost, but also moving forward, with anticipation and

excitement.

And to pass on those feelings of hope and possibility through 

acts of kindness, generosity and

compassion.

Breathing Lessons

The call that summons me home from a business trip comes as a surprise.  After six years of prepping for the other shoe to drop, I drove North in the early morning rain realizing as each mile passed that nothing prepares you.
I arrive to find my mother connected to a large oxygen machine.  She is agitated, eyes closed and it is clear she struggles for breath.  Her oxygen level is at 66 and her blood pressure is high.  A chest x-ray comes back clear.

As I sit with her, she tears the tubing from her nose and I put it back in place only to have her tear at it again.  It is a dance we repeat all throughout this day.  I swab her lips with water and she seems to like this, pausing in her agitation to suck the last bit of fluid from the swab.

The staff and I talk about my wishes, which are really her wishes.  There will be no antibiotics.  The goal is her comfort, which will include Morphine and Lorazapam.  The doctor has already written the order.  I question if it is time for Hospice to come but no decision is reached today.

They get her up for lunch using a Hoyer lift.  She no longer assists in her transfer from bed to chair.  It is one more reminder that this journey has taken a new turn.  I try unsuccessfully to feed her some lunch.  A few teaspoons of chocolate ice cream and a sip or two of apple juice is all she takes in.  She has not opened her eyes once today in all of the hours I have sat with her.

I have left for a couple hours to take a break.  I do not know if it is time to say goodbye for the last time or if this is the beginning of many trial runs before we get to the finish.  I struggle with my own breath and am reminded of the words yesterday from a friend who said "Be where you are".  Today, I sit mindful of my breath, mindful of hers.....it passes between us.

No.......

At the end of her first full week in the nursing home, my mother asked if she could go home.  How quickly in one week the power shifted from her to me.  I said no and she has never asked again.

There is a new resident named Laura.  She arrived in early August and every day is the same.  She emerges from her room every morning with purse in hand and coat thrown over her arm.  She voices bewilderment at her location and asks to call her son.  Everyday she begs him to come get her and return her to her home.  When pleading doesn't work, she begins to harass him, often with unkind words.  By days end it is clear she is worn out and in doing so has worn the staff out as well.  I can only imagine how her son feels everyday when the phone begins to ring and he has to deny her this one wish.  From my own experience,  I know that eventually she will stop calling him.  Eventually the fiery spark that wears everyone out will be replaced by resignation and submission.  That is when the Alzheimer's begins to win.  The spirit goes and with it the person we knew.

We learn.  We learn that just one word can break a heart.

Not Sure How We Arrived Here, Knowing Where We Started From...

Long before the diagnosis, there were the isolated and by all appearances random moments of out of the ordinary behaviors.  Even having said this, I could argue that nothing was out of the ordinary given my mother's way of being in the world.  Hadn't she always been less attentive and not quite aware of the space around her.  I wonder how long the Alzheimer's was present before I began to catch on.  I remember getting enraged with some of her behaviors but even then not making the connection.  I'd chalk them up to her apathy.

Did she know what was happening?  In retrospect...was Alzheimer's in the car the day she drove me down the highway in the wrong lane careening head on towards approaching cars.  You shake your head that I even have to ask,  but approaching things head on was always her way.  I remember pleading with her to allow a home based companion, handicap accessories in the shower, meals on wheels and to have the washer and dryer moved to the first floor from the cellar.  She ranted and raved accusing me of trying to ruin her life by controlling her life.  What she never understood were my desperate attempts to keep her in her own home and safe at the same time.

Even now as I write this, I can still see her as she walked out of her home for the last time.  She paused in the doorway and looked back over her shoulder perhaps capturing the scene for all time.  She knew she would never return, just as I knew.  It is the saddest part of her story for me so far.  In short time after moving into the Alzheimer's facility, she began to unravel.  It amazed me and still does when I think about how rapidly her descent began.  I ask myself all the time if I caused this by taking her out of her familiar surroundings of home.  Did I inadvertently in my efforts to keep her safe,  push her straight into her downfall?  The other option is that perhaps the safety of her new living arrangement allowed her to let go of the tight control she'd been hanging onto.  Perhaps she knew she was falling all along.  Unfortunately for me, I don't get to know the answer.  It's become what I like to refer to as my baggage.  We all have some....this is mine.

Where we are at.....

This is not a flattering picture of my mom but it is an honest one.  I have tried hard to not sugarcoat Alzheimer's in this blog.  It has been some time since I have written....the words have been there  but for fear of repeating myself over and over....I remain silent.

It is coming up on a year since I moved my mom to the nursing home she is in.  Since leaving the last facility, she has gained some weight, hasn't had a single UTI and wears matching clothes every single day!  The staff are generous in their love and kindness and not a moment goes by in which I don't feel very grateful to have found this loving home for her to be in.

She sleeps between breakfast and lunch and then sleeps some more before dinner.  I rarely catch her alert but still am met with a soft kiss to my hand when I stroke her cheek.  She smiled a few weeks ago, but smiles are fleeting and pass quickly.  The resident cat jumped into her lap last week and she said.."cat, ..off".  Alzheimer's has not changed her dislike for cats in her lap.  The resident dog spends a great deal of time on the floor by her bed.  He follows her wheelchair when she is taken to the day room.  She seems to be unaware of his presence but he doesn't seem bothered by this and continues to stay by her side.

Occasionally she says something about students and you know she is having a teaching memory.  She no longer recognizes anyone in her photos including herself.  She slips away a little more each day.  Though I search for awareness and some sign of the mom I used to know....I find none.

In the back of my closet are four dresses that she used to wear.  They were her favorites and mine.  Though several sizes too big for her now, I am unable to part with them.  It's silly really, I emptied out and sold my childhood home but can't seem to get rid of four dresses.  And that is where we are at.....

Enough......

"I'm alright".....these were my mothers words this morning right after she had her very first seizure.  She's not been doing so well lately and now this.  Did she know as a child that there would be such awfully hard moments in the years ahead?  I can remember as a child when she would fall due to poor balance as an amputee and the first words out of her mouth, whether true or not, were.."I'm alright."

In the last month, her body seems to be breaking apart.  She is covered in deep gauges from where she scratches her skin open and breaks the blisters which have begun to appear all over,  though no one has a clue why.  Through this all, she smiles and holds my hand close to her lips as she makes a very quiet kissing noise.  She hasn't a clue who I am,  but I know I bring comfort to her by my presence.  She taught me early on to be "alright".  A health scare of my own several weeks ago rendered me fairly silent with friends about what was happening for me.  "Alright" really means "suck it up".  Mom and I have been good with that but really....where does it get us?

At the risk of offending some, horrifying others....I want my mother to pass on.  Her suffering is plain to see.  The only people in the nursing home that talk about treatment and life saving medicines and hospital tests are the nurses.  The other families all look tired and in quiet voices we all agree that it's time.  I was not raised with much religion and can tell you I have even less now.  One need only walk onto an Alzheimer's wing to see the absence of God.

I love this 100 pound wisp of a woman who used to be my mom.  She cannot walk, get up on her own, pee on her own or form a coherent sentence.  It took the nurse 5 tries and 5 large bruises to draw blood from her last week.  She eats pureed food that looks like crap and no longer remembers that she liked chocolate and peanut butter and banana sandwiches.  She remembered her name the other day but only her maiden name.  The part of her life that consisted of a husband and daughter is gone.

She didn't take to religion very much as I said earlier...but she did believe that she would see all her loved ones again someday, somewhere.  She deserves that and for her sake, I hope she gets it.

Mother knows best!!

She knew just what I needed today.  She greeted me with a smile and reached out her hand to clasp mine. I held on tight for the entire visit.  It did not matter that she didn't know me.  She was giving out love and I cut to the front of the line......Happy Mother's Day mom.

Happy Birthday

My mother turned ninety today!  

I got her two new outfits, ordered the wrist corsage, picked up the cupcakes and candy and headed to see her with anticipation.  My mother and I share birthdays just 3 days apart and it was the family rule to celebrate both together on the 9th.  I joined her for dinner this evening and spoon fed her.  She kept her eyes closed but squeezed my hand occasionally.  As is the case quite often, my expectations far exceeded today's reality.  No cupcakes were eaten, no flowers smelled and no gifts were opened.  My mother kept her eyes closed, barely present and certainly not aware of her birthday.

I sat with her for two hours and quietly shared her birthday with those around me.  It wasn't what I'd wanted,  but then again it was hardly what she would have picked either.  In the end, I'm grateful to have held her hand and sat with her in the silence.

Grief, in two parts.

I find myself referring to my mother in the past tense.  My thoughts start out with "she was", or "she used to".  There are few descriptions that encompass her now.  She used to love mince pie, a good joke and letting a wave carry her into shore.  All that she was or did is now gone and the woman left behind is simple in her needs and carries few expectations.  She likes to hold my hand  and sometimes if the mood hits, she raises it softly to her lips and kisses my palm.  I grieve the mother I lost, but am unashamedly full of love for the one I have now.  We have very few shared memories between us.  There is no indication of recognition from one visit to the next.  Sometimes when I tell her I love her, she gives me a funny lopsided grin and I know she's thinking, "who is this woman who says she loves me?".  Always polite, ....she thanks me warmly and looks away.

My mother will soon turn 90...she likes ice cream, naps and a stuffed blue bear I got her for Christmas.  These things I know for sure.  I do not know the content of her dreams or if she ever remembers me.  She is affectionate and still capable of great love.  This I know to be true.  She used to sing in the car, but now she just makes noise.