I’ve been playing Scrabble

The Rockies -- from the car, while moving, with my iPhone.

My son and I went on a mini cross-country trip to Colorado last month.  I wanted to tell you all about it, but I couldn’t find my words or motivation to write.  So I’ll share a tiny bit about our trip, and then tell you why I’ve been quiet.

Our trip began on Oct. 2nd in Minneapolis where Jake ran the Twin Cities Marathon and I the 10 Miler.  Then we made our way to Denver via Rapid City, Mount Rushmore, Custer, Cheyenne, Fort Collins, Estes Park, Boulder and the beautiful Rockies.  We drove a lot, saw beautiful landscapes, ate good food, talked and talked, and saw cool wildlife everywhere including  a bugling bull elk and his harem.

Saying good-bye at the Denver Airport.

That’s all I got, but there’s so much more.  The time with my 23 year old son nourished my soul and lightened my heart, then he dropped me off at the Denver airport on Oct. 11th, and continued westward on his own in his hand-me-down mini van and home on the road.

Two days later, my father went to the ER doubled over in pain and was diagnosed with “extensive stage IV cancer.”  Colon, liver, lungs, prostate, bladder, stomach — and who knows what else.  He declined treatment, and went home with pain medication. That was four weeks ago, and I can talk about it now.

My father is dying.   My father will die soon.  It helps to say this out loud.

He’s okay right now, says he doesn’t need help yet, and promises to let us know when he does.

I’ve been laying low and processing and planning.  Okay, I’ve been hiding.  I’ve also been eating jalapeno potato chips and ice cream, and have a new personal record of 6 days without a shower.  I’m bitchy, have no patience, and turned all my lights off on Halloween and ate candy in the basement while watching “When Harry Met Sally.”  (Harry’s right by the way, men and women can’t be friends.)

The day I got the news about my dad, I invited a friend to play “Words With Friends” and we’ve been playing ever since.  I don’t know how many games we’re up to, but I’m madly addicted — or distracted, depending on how you look at it, and if my friend currently doesn’t play the spot I have my eye on, I can play “HEAVEN” for 45 points.  My friend lost his mom to cancer two years ago, and his scrabble abilities are near genius level.

My father Gary Nelson, in one of his favorite places -- in a boat on a lake.

I’ve also been crying which is well and good and such a relief.

I cry in my car, out on walks, and in the shower (that time I took one).  I cried once in the grocery store, at an art gallery, and at church when I shared during “Joys & Concerns” — what was I thinking?  I cry every time I hear “Dust In The Wind” by Kansas, which seems to be playing a lot lately.  Have you ever really listened to the words in that song??  Sheesh! Were they Buddhist monks in a previous life?

Crying is sneaky.  Which is why I stay home.

The thing is, I’m not just crying for my father.  I am grieving the loss of an era.  I’m grieving for my parents, my childhood, and even my childhood home.  I’m grieving for the innocence of playing outside, being happy when my dad came home from work, and for the way my mother called her three children in to supper — “Mar-i-lyn . . . Jo-a-anne . . . Jo-ohn . . . .”

Crying when you’re sad is really an expression of love isn’t it?

It was difficult to lose my mom in July after her long battle with Alzheimer’s.  But the thought of losing my dad — losing both my parents, and then eventually my childhood home feels so much bigger and final, and life changing.

The truth is, I’m grieving my own mortality, along with the joy and sadness that make up this beautiful and tragic life in equal measure.

You may or may not have been wondering where I’ve been lately, but now you know.

I’ve been playing Scrabble.

"Joanne365 played HEAVEN for 45 points!" We're both available for game requests -- just introduce yourself and tell us how cancer or Alzheimer's has touched your life.

 

The Vanishing

The strangest thing about the death of my mother is the vanishing.  That a person can be on this earth one minute and gone the next, seems like a cruel magic trick that I’m still trying to figure out.  As I reflect on her disappearance, I realize the slight of hand happened years ago and the vanishing was just the grand finale.

Dementia is a terminal brain disease.

I knew this but I didn’t know it.  Terminal is just a word I used to add weight and truth to mom’s disease because you’d be surprised at how many people don’t know this.  So I said it to help raise awareness and educate, and to help me say out loud in a euphemistic way — my mother is dying.

I thought I was prepared, even ready for my mother’s death.  But it was the concept of her death I was ready for, not the real thing.  In the beginning, “has dementia, will die” was loud and clear in my subconscious, then towards the end my concept was that death would be a kindness that couldn’t come soon enough.

But vanishing from the face of the earth?

It may have helped if I had replaced the word die with vanish and had been saying things like “my mother is vanishing from dementia,” or “my mother is receiving hospice care and could vanish in three to six months.”

A friend warned me about this.  She said “you may think you’re ready, but when your mom dies it will feel like you’ve been hit by a truck.”   I believed her, but “hit by a truck” was another abstract concept.  Another friend said the death of a parent is a “ground-shifting sadness.”  This rings true as I try to find my footing on this new and  shaky ground.

My mother vanished last month.

I’m sad, but I’ll be okay —  I’m just a little surprised at the size of the truck.

~  Joanne

It Is What It Is: Pat Summitt – Accepting Reality, Finding Peace.

My brother-in-law shared this inspirational video of Pat Summitt, who recently retired as Head Coach of the Tennessee Lady Vols, due to her diagnosis of early-onset Alzheimer’s disease.  Now I’m not a basketball fan, and I don’t know much about Pat Summit other than what I’ve just learned, but I like her.

As you’ll see in the video, anyone who has the words “It Is What It Is” hung over their fireplace must be a straightforward, non-complaining, acceptor of reality kind of person.

I want to be like that.  I strive to be like that.

“It Is What It Is” is a common saying with a big message.  Simply put, I think it means “I accept reality.”  Accepting reality can mean anything from accepting the traffic jam you’re in to accepting a job lay-off, or even accepting an Alzheimer’s diagnosis like Pat Summitt.  But I want to take it a step further and say “It Is What It Is” can also mean agreeing with reality.  Agreeing with and embracing reality, and even loving reality — or “Loving What Is” as Byron Katie, one of my favorite authors writes about when she says: “I am a lover of what is, not because I’m a spiritual person, but because it hurts when I argue with reality.”

The reality is life is hard, things don’t always go our way, and people get sick and die every day.   Arguing with reality adds more pain to an already difficult circumstance.  Accepting, embracing, and even loving reality leads to a path of less suffering and more peace.

It is what it is.

I have an art print that says this on my wall at home.  It spoke to me while I was shopping a couple of months ago, I impulsively bought it, and it’s been tucked away and not hung up ever since.   After learning about Pat Summitt, her brave acceptance of her Alzheimer’s disease, and that she lives by these words, I finally hung it up today.  It will be my daily reminder to accept and LOVE WHAT IS — because what else is there?

Gratitude: A Prayer Meditation

I’m going home for a week on Saturday, and I’m preparing for my trip by selecting two pair of shoes that will go with six different outfits and plow through slush and snow.

I’m also mentally preparing for the changes in my mom that are sure to be evident, and for my ability to join her in “Alzheimer’s World” where nothing makes sense, but where I need to go to truly be with her.

I’m grateful for this time, and on Valentine’s Day, wanted to share a gratitude poem that I love.

Gratitude:  A Prayer Meditation

Source of All Blessings
I am Grateful
for My life
for the Blessings
of
My breath
the beating of My heart

Source of All Blessings
I am Grateful
for Beloved Ones who
share life with me
those in our world beside me
and those in worlds beyond my knowing

Source of All Blessings
I am Grateful
to share life with our Human Family
Jewish, Christian, Muslem, Buddhist, Hindu, Sikh
May we walk gently upon our Earth

Source of All Blessings
I am Grateful
to be one with All Creation
the flight of birdwings
the swirling of blueshoals oceans deep
the runnings of wilderness creatures
the sway of forests green

Source of All Blessing
I am Grateful
to be part of the spiraling
of all space and time
beyond my imagination
Yes and again Yes I am grateful
to always be here
where else could I go?
For all this and more
I am Grateful

                                         ~   Rabbi Warren Stone

Racing Alzheimer’s: Mom’s New Year Resolutions

The funny thing is, it didn’t occur to me the Alzheimer’s I’d be racing, would be my mom’s.

New Year Resolutions are like a Bucket List, only with a deadline.  I’ve been writing down resolutions for years now, with some previous goals being to participate in Alzheimer’s research, learn how to meditate, lose 5lbs. (of course!), and last year to run a 10K.

As I thought about my Resolutions this year, I kept going back to my mom who didn’t have any.  I couldn’t help but wonder what her resolutions would be if she had the capacity to understand her short time left.  What would she put on her list?  What would she like to do just one more time?

Since mom couldn’t make New Year Resolutions, I made them for her.   Based on what I know about her, these are the things I think she would like to do this year — one more time.

Mom’s 2013 List:

  • Go to hometown of Wadena, MN to walk down main street and visit old friends
  • Eat buttered macaroni mixed with ketchup, and crumbled bacon
  • Go on a boat ride and fish for Walleye                                                     
  • Walk barefoot along a lake shore
  • Eat a BLT with a homegrown tomato
  • Visit the zoo
  • Drive downtown
  • Play with puppies
  • Watch a softball game at the park
  • Visit Minnehaha Falls
  • Watch the movie “Born Free”
  • Hold a baby
  • Listen to “Hallelujah Chorus” by the Mormom Tabernacle Choir
  • Lay in the grass and watch clouds overhead
  • Sing Christmas Carols

This list looks do-able, but it will take some planning to accomplish everything during the course of my visits home this year.   I may be delusional thinking this is even attainable — mom may not be up for a 3-hour road trip to Wadena, let alone a boat ride — but I’d like to find out.

Alright, let’s be honest.  This list is for me.  Mom would be fine without this list, sticking to her small existence of 3,000 square feet that includes oatmeal, the Price is Right, and a fenced in yard.

But let’s do it anyway!  Let me see the glimpses of joy these things might bring, knowing full well that *poof* they’ll be gone in minutes as if they never happened.  Let me live in the moment with her, and be fully present as she experiences these forgotten things that she loves so much.  Let me witness the little girl she’s become laugh and be carefree.

Let me watch as mom revisits herself and remembers she’s still here.

I’ll take pictures as we go through the list, then someday, if my children ever make such a list for me, I hope they include “Look at photos of Mom and I.”

Adding “Eat Buttered Popcorn” and “Dance to Play That Funky Music” would be appreciated too. : )

Accepting the Flow and Letting Go

“Life shrinks or expands in proportion to one’s courage.”  ~ Anaïs Nin

A website I found called “Aging Abundantly” spoke to me one day saying:

Aging Abundantly is here for you ~ the woman who is in the midst of the greatest transformation of her life ~ you who are arising from the ashes of your life as maiden and mother and emerging to don the glorious crown of the wise woman and crone.

If you’ve been reading my writing, you know that I struggle with “the greatest transformation of my life” — letting go of my young adult children and my mother who has Alzheimer’s disease.  You’d think I could get on with it, but it’s a process; and writing helps with the process.

Click here to go to Aging Abundantly, and to read my latest reflections on letting go, called “Finding Courage.”

I’m getting there.

I’m further along than I was last summer when I wrote “Adjusting Under My Rock.”

Still, you’ll probably see more on this topic, because I have more to say about love, mid-life, and letting go.

With Much Love,

Joanne

I Found Love at Costco

I was thinking about my tire as I walked into Costco the other day.  My daughter and I had recently gone on one of our “let’s drive and get lost” excursions where we hop on a country road to see where it takes us.  It’s a fun activity if you live in the country like we do and are still learning about the surrounding area.

Yesterday we learned that you can drive along the Shenandoah River when traveling south from West Virginia to Virginia.  We also learned that when you get a large nail in your tire it will sound like a flat at first, but the sound will eventually go away as the nail is driven further and further into the tire.

So I was on my way into the Costco Tire Center to get my tire looked at, when an older and a middle-aged woman were walking out together.  The older woman beamed brightly at me and said hello.  I said hello back and continued into the store as it slowly dawned on me there was something familiar about this older woman.

I turned around and easily caught up with them as they were standing in the entrance.  The older woman was still looking at me and smiled as I got closer.  Like an old friend, I put my hands out to grab hers and I said “I just wanted to say hello and tell you how lovely you look today.”  This sweet woman with her innocent face and twinkly eyes said “Ohhh!  I love you so much!”  Then she wrapped her arms around me and didn’t let go.

We stood there like that, hugging and saying I love you over and over, while her daughter, who looked to be the same age as me, and I carried out a quick conversation over her mother’s head. How many years?  Since 2003.  Do you have support?  Some.  She’s beautiful.  Thank you.  Such a joy!  Yes, we’re fortunate.  I briefly told her about my mom who is so similar.  The daughter seemed embarrassed and frazzled as she apologized for her mom who was in my arms like a child with her head against my chest, loving on me.  I said, “please don’t apologize — it’s okay, I love her too; she’s beautiful.”

I found love at Costco.  We didn’t know each other, but we were like magnets, pulled close together by an invisible force,  both knowing we weren’t strangers at all.

We reluctantly said our good-byes, and then I proceeded to sit down outside the tire center and bawl like a baby.  I cried for my mom and this sweet woman who are both so lost, yet profoundly present at the same time.  But mostly, I cried because when I cry, I know it’s the deepest part of me letting go of my mother.   And when the tears come, I know it’s time to let go just a little bit more.

Even if I’m at Costco.

Adjusting Under My Rock

1990 Mom and baby Jacob

The 10K I ran in May was the last time I ran 6 miles . . .  or 5 or 4 for that matter.  Running 3 miles two or three days a week is about it, and even that has become difficult.  Ugh!  How can I lose 3 miles in one month?!  The short answer?   Stress.   During my recent visit to Minneapolis that included moving my mom into her new Assisted Living home — I didn’t eat, I didn’t sleep, I didn’t take care of myself and I didn’t run.  I was a wreck and lost 5lbs in 10 days.  I’m pretty sure those pounds were my newly acquired 10K muscles.

When I arrived back home in Virgina, I was sick for a week and felt like I’d been run over by a truck.   And I’ve pretty much been under a rock ever since.  Recovering.  Keeping to myself in prime reclusive form.  Avoiding people.  Some might call this depression.  But I like to think of my solitude as more of an adjustment period.

Adjusting is not new to me.  As a mother, and even as a daughter of aging parents, the adjustments are aplenty.  Putting my children on the kindergarten bus comes to mind, as well as watching my newly licensed children drive away for the first time.  And of course there’s the adjustment period I’m currently in — letting go of my children as they learn to fly on their own, and letting go of my mom who is in her 7th year with Alzheimer’s.

The dictionary defines adjustment as “adaptation; harmony achieved by modification or change of a position.”

In the above definition, LETTING GO is my modification.

1993 Jordan Ruth is named after my mom.

Letting go is saying YES TO WHAT IS.   It’s saying yes to what is true right now.  While we may not like what is true, if we are to live in harmony, we have no other choice than to let go and accept.  The opposite of letting go is grasping, and with grasping comes wishing, wanting, clenching and suffering — not a harmonious place to be.

So I am working on letting go of my children and letting go of my mom.  I am adjusting.  I’m changing my position from being the center of my children’s lives to being silently by their side, readily available with a hug or advice, while they take the wheel and navigate the trajectory of their lives.

Letting go of my mom is different.  I’m saying the real good bye as I let go of my mom.   She is still with us, but because of  Alzheimer’s, I’m saying good bye to the mom who sang in the church choir, hung clothes on the line and called my children by name.  I’m saying good bye to the mom who sent birthday cards, visited me in Virginia and who called on the phone just to say hello.  Since using the words “mom” and “daughter” are confusing, I’m saying good bye to them as well.  I’ll be her friend.  I’m changing my position from being a daughter she knew and loved to that of a being a really nice woman with a friendly smile who likes to hug.   I’ll be her loving friend who calls her Ruth instead of mom . . .  who will do anything for her.

Adjusting and letting go.  Changing my position.

Soon, in a few years I would imagine, Alzheimer’s will complete it’s grip on my mom.  Then I’ll be saying good bye to mom’s physical form.   I’d like to think this won’t be too difficult as I’ll have said all my good byes by then.  But I’m probably mistaken.  And then I might be adjusting again.

Under my rock.

1996 Jake's first day of Kindergarten
1998 Jordan's first day of Kindergarten

 

2003 Mom with Jake and Jordan at Rush Lake in Minnesota. Pre-Alzheimer's symptoms.
2007 Jake's first solo drive. 16 years old.

 

2009 Jordan's first solo drive 16 years old