My Father

Many of you know that my father passed away on December 17th, 2013 after a very short, two month non-battle with stage IV cancer.  He did not want to go to battle.  At 80, he accepted his illness and lived his last two months the same way he lived his life.  He was stoic, decisive, and stubborn.  He was independent, courageous, and strong.   He did not want sympathy and he consoled others.  He was a kidder, and he made others feel better by making light of his illness.

Dad had extensive cancer that left him weak, tired, and sick almost every day near the end– and yet, he did not complain.  Not once.  In fact, he did the opposite and reassured everyone that he was alright and NOT in pain.  He was fine, thank you.

My father passed away exactly two weeks after I arrived at his home.  And I feel like he taught me more in those two weeks than maybe my entire life.  It’s as if I saw my father for the first time — and what I saw was a proud and strong man who had independence and toughness beyond measure.
Dad got up and out of bed every day, right up to the end.  The day before he died, he was standing and talking.  I said he didn’t go into battle against his cancer, but it seemed like he was battling for independence and dignity with every breath he took.  He battled for control and repeatedly said he didn’t want to “be a burden.”  For this reason, he wanted to die.  He prayed to die.  Not from pain, but because this end of life business with all the attention and loss of independence did not suit him.

On Monday December 16th, dad sat up in bed and said he wanted to go to a residential hospice facility TODAY.  This had always been an option, N.C. Little Hospice already had his name, and we were prepared to stay or go.  It was up to him.  Dad was transported within a few hours of his decision, and he blew his neighbor a kiss as he left.

The next day at around 11am, the nurses bathed and shaved him and put him in comfy pajamas, and then with his three children at his side, he died one hour later at 12:04pm.

I like to think that getting bathed and shaved in bed and NOT being in control of his life was more than he could take — he had enough, and wasn’t doing THAT again.  I like to think dad was still in charge at the end, and decided NO MORE.

Dad was in the hospice facility for less than 24 hours, and he skipped right over the sometimes lengthy “active dying” stage which was so difficult to watch with my mom — for this I am grateful.

We discovered later that “I love you too” were his last words to his three children.

I am home now with my family for Christmas, which is what dad wanted for all of us.  But we’ll be going back soon to honor and celebrate his life.

I thank you all, my dear family and friends, for your thoughtfulness and support.  I feel you, and I love you back.

Dad loved you too.

~  Joanne

 Gary Dwane Nelson
June 5th, 1933 — December 17th, 2013
age 80
Visitation 10:00 am
Celebration of Life 11:00 am
Tuesday, January 7th, 2014
Living Spirit United Methodist Church
4501 Bloomington Ave. S.
Minneapolis, MN  55407

Minneapolis Star Tribune Obituary

Dad Update

 

Greetings friends and family.  I shared last month that my dad has terminal cancer, and then I sort of left you hanging — so here’s a quick update.

Dad continues to decline, but he is one tough guy.  His hospice nurse thought he had “less than a week” over a week ago and he still continues to get up and out of bed at least once a day — until today.  But it’s early.

My sister, brother and I are taking shifts and doing our best to make sure he’s comfortable and cared for.  We are well supported with an almost daily hospice nurse visit and 24/7 phone support.

Dad is very weak and tired, but says he is not in pain.

It seems he has one foot in the afterlife and he goes back and forth between both worlds.

We are taking it day by day and sometimes hour by hour, with our father in the lead.

All is well in this cozy and warm home.

Thank you for your continued love and support.

Marilyn, Joanne, and John

In the backyard on one of our favorite toys -- the "Whirley Bird" that our dad had just put together.

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.

 

Why I Walk to End Alzheimer’s

My grandmother holding my mom in 1937

My grandmother visited me for a week in 1996 when she had moderate dementia.  To ease the burden of having one caregiver, my grandma traveled between her three children’s homes and would stay for up to four months at a time at each place.  My home was a stop-over one year as she went from my uncle’s home to my mother’s.  I was glad to have her with me, and in my hurried life with little ones, it was nice to slow down and be with grandma in her world for just a bit.

I adored my grandmother who died in 1999 with advanced dementia.  But do you know what I remember the most from her visit?  I remember her asking the same questions over and over, and me repeating the same answers over and over.  I wasn’t prepared.  She didn’t know where she was or who I was.  And whoever I was, I had some of her things that I needed to give back to her!  Talk about a crash course in dementia.  To go from the grandma who used to love on me and call me her “little dumpling” to not knowing me at all was tough — shocking even.

I didn’t know at the time that my dear grandmother would be practice for what lay ahead.

Mom and I in 2010 enjoying a day at a park, right around the time her disease went from bad to worse. This would be her last visit to my home.

Fast forward to 2005.  I am with my mother in the kitchen and she doesn’t know what to do or how to help.  She is lost and seems to find comfort staying at the sink and washing dishes.  She is clearly overwhelmed, and this is the moment when I knew.  She is 68 and slipping away so incrementally it’s almost impossible to see — but I see it here in her face, at the sink in the kitchen.

In 2008 mom can no longer pay bills or make a phone call, and caring for her home has slipped through her fingers like the hair she no longer combs.  Eventually, the names of mom’s friends, children, grandchildren, and even her own name, are gone.  Mom could hardly communicate at the end, long after she lost the ability to do most everything else.

Mom died this year at the age of 75.  Her Death Certificate lists “Alzheimer’s Dementia” as her cause of death, which I’m grateful for in this under-reported disease.

I walk for those who are already gone.  I walk for the more than 5 million Americans who don’t know who they are or who you are, and for their families who love them.  I walk for the 15 million caregivers in this country who are too overwhelmed and exhausted to walk.  I walk for the billions of dollars needed to make the National Alzheimer’s Plan an ACTION plan.  I walk for my children, and my future grandchildren.  I walk for my grandmother, my mom, and for me.

I walk to be seen and heard and I walk because I HOPE.

********************

It’s not too late to register to walk or to donate.  Go to the Winchester – Shenandoah Valley Walk to End Alzheimer’s to join my team and/or make a donation.  Look for Racing Alzheimer’s.  Get more information HERE.

You can also go to alz.org to donate and/or find a walk near you.

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?

Calgary Couple Rises Above Early-Onset Dementia

I stumbled across this short video of a dear couple in Canada who are living with early-onset dementia.  The husband was diagnosed in 2008, and his wife is his caregiver.  The wife’s gentle spirit is so beautiful.  And the two of them together make me feel like I’m witnessing love of the highest order.

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

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