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.

 

So I’ve Been “Running”

When I began Racing Alzheimer’s, my intent was to share the latest research on how to be healthy so that you and I could hopefully avoid or delay dementia down the road.

I haven’t been very good at this.

With my mother moving into late stage dementia, this blog became more about racing her Alzheimer’s by helping her and being with her as much as I could.  Still, as I focused on my mom, I didn’t lose sight of the need to be healthy.  My “prevention intention” was never far away as I watched the progression of this disease in my mom.  Talk about motivation.

While there are no guarantees or proven ways to prevent dementia, there is nothing to lose and so much to gain for trying.  There are a number of ways to keep our brains healthy that are supported by solid research — and exercise is one.

So I’ve been “running.”

If you’ve followed my running posts you’ll know I am not a runner.  Uh, because running is hard?  Truth is, all exercise is hard for me — I just don’t like it.  But of everything I’ve tried, I enjoy running the most which is to say I hardly enjoy it at all.  It’s tolerable.  I’m not very good at it which is why I’ve been running so slowly it can hardly be called “running.”  Oxygen deprived lumbering is a better description.

So why do it?  Because study after study suggests exercise as an important way to prevent Alzheimer’s disease.  One Mayo Clinic study found:

Older adults who regularly engaged in moderate exercise five or six times a week reduced their risk of mild cognitive impairment by 32 percent compared with more sedentary people. Those who began exercising at midlife saw a 39 percent reduced risk of mild cognitive impairment.

Mayo Clinic goes on to say, “It’s not clear how exercise protects the brain from Alzheimer’s, but research indicates several possibilities, including:”  1) increased brain volume, 2) improvement in brain connections, and 3) improved blood vessel health.   In addition, Harvard Professor John Ratey, M.D. says exercise is “Miracle-Gro for the brain” and the “single most powerful tool you have to optimize your brain function.”

It’s kind of hard to say no to that.

I’ve been lumbering and training for a 10 mile race in October.  The Twin Cities 10 Mile is something I’ve wanted to do since I started lumbering in 2011.  It’s by lottery and I wasn’t selected last year.  So you can imagine my surprise when, barely able to run 2 miles, I found out I got in this year!   Yay!!?   After I settled down and let go of my fear, determination set in — and I started training.

I’m up to 8 miles now and my knees would like me to stop.

As grueling as the training has been, I’m thrilled to be running this race in my hometown, in my 50th year — the year my mother succumbed to Alzheimer’s disease.  I’ll run for my mom, and for me and for all my aging brain cells.   My son will be running the Twin Cities Marathon at the same time — 16.2 miles farther than me, and I’d like to think I can finish before him.

I’ll share other ways I’m Racing Alzheimer’s down the road, but for now, it’s all about the lumbering, and my knees, and my brain cells, while b r e a t h i n g, and taking one step at a time.

With Abundant Gratitude,

     ~  Joanne

Mom’s Remembrance

An image I'll treasure, taken four days before she left.

It’s been a very long two weeks, but I am back home in Virginia and wanted to post something for friends and family since my mother’s passing on July 6th.

The service, mom’s “Celebration of Life” was a beautiful tribute to a life well lived.  There were flowers and hymns, prayers and poems, a slideshow, scripture, and two solos with guitar by my mom’s Musical Therapist who had been singing for her since April.

We took care to make mom’s service and reception her own.  We had blue linens, bouquets, and big blue hydrangea’s to honor her favorite color.  We had The Carpenters, Barbara Streisand, and Neil Diamond to honor her favorite songs.  We also included “The Animal Prayer” by Albert Schweitzer in her service to honor her love of animals.

I must say — mom’s service was beautiful.

It should also be noted that the people in my parent’s church came together as a supportive and hard working community to help make my mother’s service and reception successful and memorable — a huge thank you goes out to Living Spirit United Methodist Church.

With my brother and sister’s blessing, I gave the “Family Remembrance” and said out loud who my mother was, which I felt was important.  But even as I say this, I’m sure I didn’t capture all that she was.  And if you’re reading this and are anticipating the loss of a loved one, might I suggest you start thinking about what you want to say now and begin writing some things down?   Because it’s hard enough to write about a loved one who’s gone, but even harder when in the chaotic midst of funeral planning.

So I cheated.  I took something I wrote on my blog last year titled “Mom: A Brief Biography” and I tweaked it a bit.  It was a relief having something in hand, but if I could re-wind the clock, I would have written a remembrance for my mom a year ago when there was more time to get it right.  But hindsight is like that, almost everything is like that.  We live, we learn.

But still, I don’t think I could have ever gotten it “right.”  I mean, what words would I use to convey all that my mother was?  How would I have described her?  I couldn’t, I didn’t, so this will have to do.

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

A REMEMBRANCE     ~   by Joanne Leonardis, Ruth’s daughter

My mother, Ruth Joanne Hall was born 1937 in Wadena, Minnesota.  She was the oldest of three children and in many ways had an idyllic childhood — she was a Girl Scout, had a paper route, played the piano, sang in the church choir and yes, she even wore bobby socks and poodle skirts.

She graduated from high school in 1955, then moved to Minneapolis to attend the Minnesota School of Business and receive her secretarial degree.  She learned shorthand, dictation and other “cutting edge” office duties and then worked at IBM for five years where she was like a “Mad Men” secretary with cat-eye glasses.

Mom met my father during this time, they married in 1960 and my sister Marilyn soon came along in 1962.  I followed in less than a year, and my brother John came three years later.  Mom stayed home with her children, but her secretary training would prove beneficial as she ran our household like a business and balanced the checkbook down to the penny every month.

Our childhood was rich with activities like traveling throughout the country, camping, fishing, family bike rides, sledding and drive-in movies.

Later, with the three of us grown and mostly out of the house, mom went back to work. She had about 20 years or so to rediscover herself, travel, and spend time with her grandchildren before her Alzheimer’s diagnosis came around 2005 when she was just 68.

The long and slow descent into the fog of Alzheimer’s has been her journey for the last 8 or 9 years now.  And we have all said a thousand good-byes during this time.  In the beginning we said good-bye to simple remembering, like what we talked about yesterday, or how to make a meal.  Then we said good-bye to things like getting a call just to say hello, birthday cards, and even knowing our names. Finally, we said good-bye to most everything that resembled our mom.

But this is not what we’ll remember.  Instead of focusing on what Alzheimer’s took, we choose to remember what mom kept.

Mom kept her joy.  She never once complained even though she knew what was happening to her.  In the very beginning of her disease, I tentatively asked her – “do you know that you have what grandma had?” And she replied, “yes, but I can’t do anything about it, so I may as well be happy.”

Mom kept her friendliness.  Strangers were friends she hadn’t met yet.  This could be a bit awkward at times, but really, it was a great lesson – we are all here together, we are all friends.

Mom kept her sense of humor.  She was playful and silly right up to the end.

Mom kept her love and tenderness.  I can’t tell you how many people have shared that mom was “the best hugger.”  That’s just what she did.  She wasn’t afraid to reach out and touch people.  My mother wasn’t afraid to love.

Mom lost just about everything, but she kept her heart.  She may not have known your name, but her heart knew you, and her heart loved you.

Mom showed us that in the end, all that’s left, all that matters — is love.

Some things mom loved are:

Fishing

Softball

Texas Blue Bonnets

Raisins

Garage Sales

Animals

The Mormon Tabernacle Choir

Recycling

Picking raspberries off the vine

Parades

The color blue

Bacon

Hanging clothes on the line

Walking to run her errands

The Carpenters

Clouds in the sky

Minnehaha Falls

Friends

Family

And YOU

If you are so moved, memorials may be made to:

Alzheimer’s Research Center
640 Jackson Street
St. Paul, MN  55101


CLICK HERE to learn more about the Alzheimer’s Research Center.

***  Also, if you are so inclined to share this post, I ask that you copy the link that’s in your browser and paste it in the email you are sending out so the recipient will be directed to this website.   Thank you.   ~  Joanne

Mom Update: Her Final Goodbye

My mother’s long goodbye came to an end on Saturday, July 6th at 12:26pm.

Thank you for all your love and support.

RUTH JOANNE NELSON
September 11th, 1937 — July 6th, 2013

**********

 A Celebration of Life
Thursday July 11th at 11:00 am
Living Spirit United Methodist Church
4501 Bloomington Ave. So.
Minneapolis, MN  55407

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.