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.

Mom Update: June 2013

Grandma seemed to understand that these two young people were "somebody special." Jake (22) and Jordan (20) enjoyed visiting with their grandmother. (How about those shorts?! Yeah, they're gone now.)

What I remember the most from my recent visit with my mother is how she looked.  She has a look to her that’s difficult to describe, but which I’ll never forget.  It’s a shuffling, stooped look combined with an ashen complexion and empty eyes that I can best describe in one word — GONE.

Does that sound awful?  I don’t mean it to.  Is there a better word to describe my mother?  I’m sure there is, but I like this word right now.  Gone baby, gone.

Tying shoes, zipping up, getting dressed, gone.  Bathing, toileting, hygiene, gone.  Conversation, comprehension, self-determination, gone.

I suppose I could get sentimental and tell you how she’s here too.  How she always says my name at some point during my week long visits.  How she isn’t looking at me when she says it, but releases it like a butterfly to the wind for me to gently catch.  And that she probably doesn’t know why she says it, but she does — because something remembers, and that means part of her is still here.

Hugging, smiling, humor, here.  Walking, talking, helping, here. Laughing, loving, saying my name, here.

She’s here and she’s gone all at the same time, and I see one or the other depending on the moment, my perspective, and even my mood.   She can be hard to find, and sometimes seeing my mother as gone is easier than finding her here.

* * * * * * * * * * *

Here’s a quick report from my mom’s hospice nurse yesterday:

They are still trying to move mom’s sleep cycle.  She was previously sleeping from 7pm to about 3am, which is bad enough, but now she sleeps from 6pm to 1 to 3am, which isn’t good.  Mom needs more help eating, and she looks like she’s lost more weight.  (Weigh-in next week.) She is still walking, but is not as steady on her feet.  These are the things we are watching — sleep, eating, weight, walking.

The good news is that mom appears comfortable and at ease.  There is no distress in her face or demeanor and she is still able to smile and be happy.  This is amazing to me and such a testament to the power of a positive spirit.

I like to think my mom's heart knew her grandchildren. She was clearly happy to see them, she was a little emotional, and she had a lot of hugs to give.

Out of respect for my mother, I will never post pictures of the “gone” woman that I described.  She looks pretty good in her pictures, which is one of the reasons Alzheimer’s can be so invisible.

Mom Update: May 2013

Mom listening to a Music Therapist sing some of her favorite songs. This was a beautiful and very emotional moment.

Many of you know my mom has advanced dementia, had a major seizure in April, and has been receiving hospice care ever since.   Hospice has been trying to reduce her restlessness and bring more sleep and calm into mom’s life.  It’s been a trying time during this hit or miss process of adjusting meds, and if you saw Dear Assisted Living Home, you’ll know it’s also been a frustrating time.  That’s why three weeks ago, I decided to move my mom in with me where I could take care of her one on one along with Hospice services here.

And then I changed my mind.  It was a decision based purely on emotion.   A reaction to distress — my mom’s and my own.

When our daughter was five years old, she had something stuck in her throat that allowed her to breathe and talk but caused her to panic and pace the house in obvious distress.  We tried everything to get it out including calling the doctor who said if she can breathe and talk, she’s probably fine.  Her panicked pacing went on for about an hour, when she jumped up on our bed all flushed and bothered, stood there with arms outstretched and fists clenched, and yelled in desperation, “SOMEBODY DO SOMETHING!!!”  I brought her to the ER, and four hours later, with my daughter asleep in my arms, the doctor said she probably got a toothbrush bristle stuck in her throat which seemed to have worked it’s way out.

“Somebody do something!” is said to this day in our home and it always makes us smile.  But my point is, this is how I felt about my mom.  She’s progressing quickly, she’s agitated, her caregivers are agitated and I jumped on the bed and yelled “SOMEBODY DO SOMETHING!!!”  Mom needs her family, her daughter, we need to bring her home with us!  We need to do something!

Since I left Minneapolis a month ago, mom has become completely incontinent of bowel and bladder.  She is no longer able to feed herself, and is having more difficulty swallowing.  Walking is the only activity mom can do on her own, but she’s losing this too and a wheelchair is in her near future.

The window to move mom came and went, and I missed it.  Her dementia moved so slow the first eight years or so that I wasn’t prepared for her recent rapid decline.  Mom needs total care now and to remain in familiar surroundings — she won’t be going anywhere.  But we’ll be going to see her.  My two children and I are traveling to MN soon because Jake will be working there this summer and we wanted to make a road trip out of it.

I adore this picture of mom and my nephew, mom's grandson -- Javier. Javie visited from Texas in April and mom was smitten with him from the start, apparently thinking he was a love interest.

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

Yes, Mom Is Ready For Hospice

Celebrating mom's 70th birthday in 2007 in northern Minnesota.

My family met with hospice yesterday and my mother qualifies for care under the diagnosis of “debility,” also known as failure to thrive.  It’s my understanding that mom didn’t qualify under “dementia” because she can still walk. When you look at my mom you wouldn’t think she’s ready for hospice, but when you put everything together it makes sense:

  • terminal illness
  • requires assistance in all Activities of Daily Living (ADLs)
  • weight loss — 13 pounds since December
  • pneumonia
  • seizure
  • difficulty swallowing

Saying YES to the “comfort care” of hospice means saying NO to life saving measures.  It indicates surrender and turning towards death rather than away from it.  It means 911 will not be called if my mom has another seizure, and antibiotics are an option if she gets pneumonia again.  It feels a little bit like playing God, but mostly, it just feels like compassion.

Mom supported Jack Kevorkian’s mission and believed we should be as kind to humans as we are to animals.  Mom would approve of this hospice plan because if she could articulate her thoughts, I’m pretty sure she’d say she’s had enough.

Hospice will need to re-qualify mom in three months to determine if services are still necessary, but she isn’t getting better and I’m guessing she’ll be re-approved.

So there it is.  We don’t know how much longer little Ruthie Hall from Wadena, MN will be with us, but I am not ashamed to hope for a swift and peaceful transition.

2007 Mom always enjoyed swimming.