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.

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.

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

An Invitation To Walk, Raise Money, and Help End Alzheimer’s

Racing Alzheimer’s has a Team and needs Team Members!
Save the date and join me for the
2013 Shenandoah Valley Walk to End Alzheimer’s!

 

Event Details

The Alzheimer’s Association Walk to End Alzheimer’s® is the nation’s largest event to raise awareness and funds for Alzheimer’s care, support and research.

WHEN:  Saturday, September 28th (Rain or Shine)
Check-in 8:30 am     |     Program 9:30 am     |     Walk 10:00 am

WHERE:  The Willows at Meadow Branch
1881 Harvest Drive    |    Winchester, VA  22601

WHAT:  Choose between a 1 mile or a 3 mile walk option.  Start line will be at the facility and walking will be mainly on walking paths and sidewalks.  Walk routes to be determined.

HOW:  Click Here, go to Register, then Join A Team, find Racing Alzheimer’s.

This is the first time I’ve created a team like this and I’m very excited about it!  I have a very achievable goal of recruiting 10 walkers and raising $1,000.  This is a great way to raise funds and awareness while having fun.  And if you have personal experience with dementia, this is an opportunity to join together and DO SOMETHING!

Please let me know if you have any trouble registering or have questions about this Event.

I hope you can join us!

     ~  Joanne

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

Sweaty Sweethearts In The Huffington Post

A few weeks ago, Huffington Post sent a shout out for photos of couples exercising together.  So of course I obliged and sent in a picture of Vince and I before we ran the Shenandoah Apple Blossom 10K last May.

Here’s the HP article titled, “The Perfect Workout Partner: Why Couples Who Sweat Together Stay Together.”

Once you get through all the icky stuff about passion and blood flow, you’ll find Vince and I in the 9th photo.

Do you exercise with your partner and do you agree with the article?

I sent HP a nice, sweat-free pre-race photo, but I think this sweaty post-race pic tells a better story.

6 Reasons I Joined A Gym

I joined a gym! 

My feelings about this are somewhere between excited and terrified, but I’m looking forward to getting started.  I never considered myself an “exerciser” until 2011 when I began running and working out on a somewhat regular basis.  I got into it pretty quickly and found myself exercising four to five days a week which was unheard of for me — I felt great, went down a pant size, was signing up for 5Ks and a 10K — and then  . . .  I  . . . gradually . . .  stopped.  Well, almost stopped.  I still ran a little here and there, did sporadic floor exercises, “push-ups” on the stairs, squats while blow drying my hair, but it was all going to hell and my motivation was waning.

So I decided to join a gym.  Here’s why:

1.  Motivation.  I need to be where other people are working out.  It’s tough to stay motivated when I’m doing it alone.

2.  Weights.  After receiving poor results on a recent bone density scan, I have no choice but to begin strength training.

3.  Classes.  Yoga, Zumba, Cycle, Pilates, Boot Camp!

4.  The big 5-0.  I’m turning 50 this year.  Aaaaagh!  When? How? Must turn back time!

5.  Cost.  It’s crazy inexpensive right now at Gold’s Gym.  Maybe they have good deals where you live?

6.  Alzheimer’s Prevention!  Exercise and pumping iron are two of the best things I can do for my brain.  It’s a no-brainer. ; )

Also, see me in that batting cage?  It was a lot of fun, and it brought back memories of my softball days, but that was on Dec. 26th, two weeks ago, and I am STILL in pain.  I am so dog-gone weak that I have virtually no upper body strength, and I’m still paying for my batting fun.

I am weak.  I want to get strong.  That’s why I joined a gym.