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.

 

Mom Is Happy and Well

Mom the day before her move.

My mom’s 10 Day Care Conference, which was really 12 days, went well.  They love her there.  Mom is upbeat and happy and she still hugs everyone.   She enjoys helping with chores and is able to remain focused long enough to finish small jobs.  Mom is sleeping and eating well and enjoys spending time with the other ladies.

Mom needs help bathing, dressing, grooming, and oral hygiene.  She needs direction with pajamas and getting to bed.  While mom is sleeping, the clothes she just wore are taken to the laundry or she’ll wear them again.  Someone needs to show her where the bathroom is — every day.

Mom uses her maiden name now and identifies as her younger self.  (If you’re thinking about sending mail, addressing it to Ruth Hall would make more sense to mom.)  Mom hasn’t asked about going home.  And she didn’t acknowledge my father when he was there today.

It’s amazing how quickly and easily she let go of her previous life and settled into her new home —  which tells me she is much further along than any of us realized.

She is happy and settled which is such a relief.

Mom is only 74, but she is home.

I asked for a sexy pose.

 

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.

A Circle of Friends Say Good-bye

Circle of Friends

It was a quick decision to place my mother in a Residential Home.  The idea was discussed on Monday, it was finalized on Wednesday and she moved into her new home on Friday.   But we couldn’t just let my mom vanish from the neighborhood without a good bye.  She’s lived in the same house for 47 years, (I grew up in this house), and the neighbors have become dear friends.  So we had a small gathering around a fire in my parents backyard.

My mom was happy to see people and have a party, but the send off was for the neighbors benefit as well.  Nobody said good bye and the move wasn’t mentioned because it would have just confused and concerned her.  So she drank her root beer and had a great time and we all watched her knowing that her life was about to change.

We had fun.   But I felt like such a sneak.

Not the best shot of my parents, but you can see my dad being a good patient by putting his foot up.

My mom moved into her new home today and she isn’t here tonight.  We’re here, but my mom is not.  So strange.  I don’t like how this feels..  I hope my mom is okay.  I hope my dad is okay too.  I hope mom went to bed alright.  And I hope to write more about this experience someday.  But I can’t just yet.  I’m so tired I could sleep for days.  Good night friends.  Good night mom.

 

 

Alzheimer’s — Not Afraid to Love

Mom, 1940, 3 yrs. old, Wadena, MN

I live far away from my parents and I’ll admit, I need to mentally prepare myself to be with them . . . especially my mom when I visit.  My mom is not my mom anymore. It’s like a stranger is inhabiting my mother’s body — except my mother’s body doesn’t look like mom anymore either. Alzheimer’s disease has changed my mom both inside and out. She used to care how she looks, and now she doesn’t have the capacity to care.  She used to be a familiar harbor, offering motherly comforts, and now she’s the one who needs comforting and reassurance.

But, I’ve been visiting my parents for almost a week now, and one thing is clear — my mom is full of Love.

Mom loves strangers.  She actually believes that everyone is an old friend.  She talks to most people, and she hugs them and tells them she loves them.  She kissed an elderly woman she didn’t know on the lips, and since the woman seemed to enjoy it, I’m pretty sure she had dementia too.  It’s interesting to watch.  This activity used to bother me, but I’ve learned to relax and I’ve noticed that most people don’t mind.  But sometimes I wish I had a card that said “Alzheimer’s — she’s harmless.”

Or, “Alzheimer’s — not afraid to love.”

Mom also loves children.  She gets down on their level and tries to make them feel special.  Children are usually more receptive to the joy my mom has to give, but the parents – not so much.  She high-fived a family of six the other day, and afterward she told me, “I like to do that so they know they have something here.”

My mom loves just about everyone and everything.  She loves raisins, the sunshine and the clouds in the sky. She loves animals, pine cones and waking up to a new day. Mom told me once, that when she wakes up in the morning and opens the blinds to let the sun in — she could just cry. She cries lately; but they seem to be tears of joy — like the innocent joy of a new day.

My mom is like a child — a happy child finally free from the worries of the world — who is not afraid to LOVE.

Ruth Joanne Hall, 1939, 2 yrs. old

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