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

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.

Graduation Celebration Procrastination

We just returned from a week long trip to California to attend our son’s college graduation and participate in “the great dorm clean-up.”  Don’t misunderstand, it was a joyous occasion — but one that included the ever present sense of a mountain to climb against a ticking clock.

The week, from my point of view.

Thursday
Arrive!  Meet Jake!  Learn he needs to be vacated by Monday at 8am!
Visit dorm, resist heart attack, dismiss any notion this will be a vacation.
Feel sense of panic and an unseen freight train quickly approaching.
Try to help.
Hear Jake say he has it “under control” and will “take care of it later.”
Go to hotel, fall into bed, dream of son being buried alive in dirty clothes.

Friday
Go to Bookstore.  Give college more money.
Meet Jake with thoughts of garbage bags and haz-mat suits swirling in my head.
Try to help.
Advised by son with four years of high-priced problem solving skills that dorm room can wait.
Tour Pasadena, hike a canyon, eat a two-pound burrito.
Pick up Jake’s newly tuned-up mountain bike from bike shop.
Pick-up large bike box to ship other (road) bike which still needs to be dismantled and packed.
(The road bike will fly home with us, the mountain bike will fly home later with Jake.)
Tick tock.

Jordan and her calm brother on our Pasadena hike.

Saturday
Allowed to help in dorm room, make small dent.
Attend graduation luncheon while Jake’s $900 mountain bike is stolen from his vacant suite.
Jake looks for bike and makes unproductive police report.
Take advantage of Jake’s unfortunate distraction, make BIG dent.
Wonder where I went wrong as I’m engulfed in piles of dirty clothes and 4 months of grime.
Commiserate with other speechless parents drowning in their own son’s sea of procrastination.
Realize my son is “normal,” stop blaming myself, join “parents of messy sons club.”
Do five loads of laundry.  Husband dismantles and packs road bike. Dorm room is half done.
Dinner out with Jake’s friends and their families.  Reservations for 48!
Tick-tock.

Sunday
Greet father-in-law and brother-in-law who arrive from NY.
Meet Jake for brunch in Dining Hall.  Give college more money.
Resist asking about dorm room progress.
Commencement at 1:30.
Ugly cry.
Photos.
Good-byes.
Family dinner.
Increase son’s net worth.
Goodnight and good luck to Jake who will spend his last night packing.
Go to hotel, fall into bed.
Receive text, Jake requests assistance between 7:30 – 8:00 in the morning.
Realize the job requires zero emotion and reckless abandon.  I cannot go.

Monday
Husband goes to dorm, I go to Starbucks.  I enjoy my first ever Caramel Dolce Latte with my daughter, we leisurely sit by the pool, and I realize:
1.  It’s my first relaxing moment since we arrived on Thursday.
2.  I am to blame for my stress.  I mismanaged the blurry line between helping and letting go.
3.  I have serious issues with letting go.
4.  I finally understand the obsession with Starbucks.

Jake packed up and moved out on time, and my husband returned unscathed.  We drove to San Diego to visit family and celebrate two more college graduations with a homemade Italian feast.  We toured San Diego, sat on the beach, ate the best Mexican food EVER, and traveled 14 hours to arrive home at midnight on Wednesday.

To close, my son may be messy, and he certainly procrastinates, but I couldn’t be prouder of him.  He focused where it counted — on his coursework.  Jake went to a demanding school, he worked harder than he’s ever worked, and in four years he walked out with a degree in physics.  For that, among other things, I am very proud and grateful.

  CONGRATULATIONS JACOB!!!

Jacob Leonardis ~ Harvey Mudd College ~ Physics

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

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

 

We Are a Family of Five

I’ve been talking a lot about my mom lately.  That’s just where my head is at.  But you should know that I’m not the only one concerned about my mom.  I have an older sister and a younger brother who have been right here with me all the way.

We are a family of five.

My brother John lives in Minneapolis near my parents.  He has the task of “being there” since my sister and I live far away.  So my brother has been helping with things like mowing the lawn and shoveling snow.  Groceries, laundry and even doing the floors have also been on his to-do list since my dad is on crutches.  But the biggest help John has been is just knowing he’s nearby in case my parent’s need assistance on short notice.   It’s a lot of pressure being the only one there — but my sister and I are so grateful for his presence and eagerness to help when needed.

Joanne pulling John, 1967

My sister Marilyn lives in Texas but has been generous with her time and so helpful with her expertise in the medical field.  While I manage my mom’s medications and medical issues, my sister manages my dad’s.  The sharing of these two responsibilities has been invaluable as both parents have health issues.  You know our mom has Alzheimer’s disease, but our dad was recently diagnosed with congestive heart failure and atrial fibrillation.   (There’s prostate issues too, but my dad is pretending they don’t exist).  And with his recent ankle surgery, my dad’s a walking pharmacy.  So my sister is on top of his medical and medication management.  Thank God!

Marilyn and Joanne, 1965

The three of us also helped clean out my parents house in 2011.  I haven’t mentioned this before, but my mom became a bit of a hoarder in her later years and trust me when I say it took the three of us an entire week to clean out the house.  That’s another story.

What I’m saying is I am not alone.  I have my sister and brother.

The three of us pulling together and perhaps becoming closer has been a beautiful blessing during this difficult time.   They have my love, admiration and respect.  Always.

Mom: A Brief Biography

Mom, 3 yrs. old, 1940

My mother, Ruth Joanne Hall was born 1937 in Wadena, Minnesota. She was the oldest of three children born into a middle-class family. She had in many ways an idyllic childhood — along with a successful father and nurturing mother, she was a Girl Scout, had a paper route, sang in the church choir and yes, she even wore bobby socks and poodle skirts as a teenager. Mom graduated from high school in 1955.

Mom in 1959, age 21. On the back of this photo, in my dad's handwriting, it says: "She's Wonderful!"

After graduation, Mom completed secretary courses at the Minnesota School of Business, where she learned shorthand, dictation and other “cutting edge” office duties. Mom went on to work at IBM for five years where she was like a “Mad Men” secretary with cat eye glasses.  She loved her job.  She met my father during this time, they married in 1960 and my older sister soon came along in 1962. Mom stayed home after that, but her secretary training would prove beneficial throughout her life as she ran our household like a business. She had impressive organizational skills and balanced the checkbook down to the penny every month. (My dad benefited from this arrangement until it all came crashing down with my mom’s Alzheimer’s diagnosis.)

My parents, 1959 -- channeling Ralph Lauren.

My parents had three children under four years old in 1966. It was only after having children of my own that I appreciated how difficult this must have been for my mom. Especially in those days without the modern conveniences we have now. I have vivid memories of my mom rinsing out cloth diapers, washing them in an old fashioned tub, running them through a “ringer,” and then hanging them on the line.

Marilyn, Joanne, and John -- 1968 I think.

When the three of us were grown and mostly out of the house, my mom began working part-time as an office assistant at a nearby company. She loved it and I’m sure she felt like she got part of her life back. She had about 20 years or so to rediscover herself, travel and spend time with her grandchildren before her Alzheimer’s diagnosis came in 2005 when she was 68.

The long and slow descent into the fog of Alzheimer’s is her journey now. Click Here to see what Stage she is in today. Her family is on that journey with her and as many of you know, it’s a long and challenging road.  It’s been called “The Long Goodbye” — I can’t think of a more perfect description for Alzheimer’s disease.

My parents, 2010