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

You Are Not Alone

There are more than 15 million dementia caregivers in this country and every single one can benefit from support of some kind.  Meals, errands, respite, support groups, and hugs to name a few.

Alzheimer’s support groups can help a person feel like they’re not alone.   When I was in a group and heard a participant share frustrations of caring for her loved one and her secret hope for a swift end, I knew I was in the right place.  I also knew that I’d one day want to give back by leading a group of my own — and that time has come.

But first, let me tell you what happened.

I began the application process last year with the local Alzheimer’s Chapter.  After many calls, a fair amount of paperwork, an interview and a background check, I was thrilled to be “hired” for this volunteer position!  And then it went nowhere.  I heard this chapter was “restructuring” which was fine.  I could wait.  But I imagined my eager and ready application languishing in a drawer and becoming a forgotten file.

Then a few months later out of the blue, a friend contacted me to ask if I was interested in taking over a local Alzheimer’s Support Group that was in need of a new facilitator.  This friend and I had not been in touch in awhile, she had no idea I was pursuing this, and said she just “thought of me” when the spot became available.

Amazing how things work out.  Of course I said yes.

I co-facilitated my first Group in June, my mother vanished on July 6th, and ten days later I was leading my second Group.  Reealy bad timing.  I had nothing to give, but what was I to do?  I committed and wanted to follow through.  So I went, and shared, and cried.  People cried with me, probably because they could see their lives in my story — they have lost or are losing their loved one with dementia too and it’s okay to be sad.  It’s okay to cry.

Support goes both ways.

My little group meets at the Winchester Medical Center, on the 3rd Tuesday of the month from 7:30 — 9:00pm.  We talk about everything related to having a loved one with dementia.  We laugh, we cry, we listen and support.  All are welcome.

Be a Alzheimer’s Support Group Facilitator — CHECK!

There is most likely some type of support for whatever you are going through.  Whether it be a group, a counselor, pastor, or a friend — I encourage you to reach out and find support.

CLICK HERE to locate an Alzheimer’s Support Group near you.  Or go to ElderCare.gov for additional resources and to find your local Area Agency on Aging which can direct you to a support group for your specific needs.

Together we are strong,

   ~ Joanne

Racing Alzheimer’s: Mom’s New Year Resolutions

The funny thing is, it didn’t occur to me the Alzheimer’s I’d be racing, would be my mom’s.

New Year Resolutions are like a Bucket List, only with a deadline.  I’ve been writing down resolutions for years now, with some previous goals being to participate in Alzheimer’s research, learn how to meditate, lose 5lbs. (of course!), and last year to run a 10K.

As I thought about my Resolutions this year, I kept going back to my mom who didn’t have any.  I couldn’t help but wonder what her resolutions would be if she had the capacity to understand her short time left.  What would she put on her list?  What would she like to do just one more time?

Since mom couldn’t make New Year Resolutions, I made them for her.   Based on what I know about her, these are the things I think she would like to do this year — one more time.

Mom’s 2013 List:

  • Go to hometown of Wadena, MN to walk down main street and visit old friends
  • Eat buttered macaroni mixed with ketchup, and crumbled bacon
  • Go on a boat ride and fish for Walleye                                                     
  • Walk barefoot along a lake shore
  • Eat a BLT with a homegrown tomato
  • Visit the zoo
  • Drive downtown
  • Play with puppies
  • Watch a softball game at the park
  • Visit Minnehaha Falls
  • Watch the movie “Born Free”
  • Hold a baby
  • Listen to “Hallelujah Chorus” by the Mormom Tabernacle Choir
  • Lay in the grass and watch clouds overhead
  • Sing Christmas Carols

This list looks do-able, but it will take some planning to accomplish everything during the course of my visits home this year.   I may be delusional thinking this is even attainable — mom may not be up for a 3-hour road trip to Wadena, let alone a boat ride — but I’d like to find out.

Alright, let’s be honest.  This list is for me.  Mom would be fine without this list, sticking to her small existence of 3,000 square feet that includes oatmeal, the Price is Right, and a fenced in yard.

But let’s do it anyway!  Let me see the glimpses of joy these things might bring, knowing full well that *poof* they’ll be gone in minutes as if they never happened.  Let me live in the moment with her, and be fully present as she experiences these forgotten things that she loves so much.  Let me witness the little girl she’s become laugh and be carefree.

Let me watch as mom revisits herself and remembers she’s still here.

I’ll take pictures as we go through the list, then someday, if my children ever make such a list for me, I hope they include “Look at photos of Mom and I.”

Adding “Eat Buttered Popcorn” and “Dance to Play That Funky Music” would be appreciated too. : )

Back to Minneapolis: July 2012

We moved my mom into an Assisted Living Home on May 18th, 2012 without planning for it and with only two days notice.  We barely had time to move her in and make her room feel like home before I flew out the next day.  It sort of felt like I dropped my mom off at a daycare and then never picked her up.  Even though I knew it was the right thing to do, it just felt wrong.  One of the biggest events in my mom’s life was rushed, because I was rushed.

It’s been two months since mom’s been in her new home and I hear she’s doing great.   But, I’m thrilled to be going back this week so I can see for myself.  I also feel like this is a chance to take things slow and do some of the things I wanted to do in May.

Public Service Announcement: Mom is a champion back scratcher and this is her signal indicating she is open for business. I'm not kidding.

Some things I’m looking forward to are:

  • Going for walks in the new neighborhood mom lives in.
  • Dining with mom and her new friends.
  • Washing dishes with mom.
  • Decorating her bedroom with old family photos and girlie stuff.
  • Maybe getting new bedding for her twin bed.
  • Taking mom to the beauty salon for a haircut.
  • Just being with my mom, and being fully present, with nothing but time on my hands.

My sister from Texas will also be there, and so with the Nelson family of five all together, we have a photo session scheduled at Lake Nokomis.  We haven’t had a professional family photo taken in about 35 years, so this will be it — most likely the last shot of all of us together.  You know the family pictures people take when someone has terminal cancer?  That’s what this feels like.  Except mom won’t look sick, she just won’t know what’s going on as she smiles innocently at the camera.  I’ve given the photographer a heads up telling him, “my mom will think you’re an old friend, and she’ll be so happy to see you that she’ll probably hug you.”  The photographer said that’s okay, his grandfather had Alzheimer’s and he’s very familiar with “going with the flow.”  This disease touches us all.

This will be my first visit to see my parents in years when I haven’t had a major to-do list.  I am so looking forward to just chilling and spending quality time with my family.  Plus I have a date with Lake Harriet I need to attend to, (see Bucket List).  There’s nothing like Minneapolis in July!

 

Run a 10K . . . CHECK!

The 10K almost took me out this morning, but I persevered and came down the stretch under my goal time with a 1:08:45 finish. I have never been more grateful for a finish line. Things were humming along pretty smoothly until I hit mile 5 and the thought of walking started creeping in on me. But I decided before I started, that stopping was NOT an option. So I hung on, and even managed to pick up my pace on the last mile when I saw how close I was getting to my 1:10 goal.

Here are some photos of our morning from my generous and beautiful friend Laurie Orr who graciously agreed to get up early on a Saturday morning to capture this event.  Thank you!

I was a little nervous and accidentally put my number on upside down.
The Leonardis Girls have arrived and have made their first appearance at the Apple Blossom 10K! WooHoo!
My awesome brother-in-law Tony, me, my amazing daughter Jordan, and my always supportive husband Vince.
I love this picture! Family is everything. I am mentally inserting my son Jake into this picture. He couldn't join us, but he was still with us.
Right before mile 3.
The last brutal push to the finish.
Done. Finished. Check.
HAPPY!!!

Shenandoah Apple Blossom Festival 10K
May 5th, 2012 Winchester, VA
Time:  1:08:45
Pace:  11:04

Dear 10K Course,

I’ll admit it.  You intimidated me after my practice run and I was a little nervous when I arrived at your gates this morning.  But I tried to keep calm by reminding myself that I was in charge, not you.  I had my run in my head, and I wasn’t going to falter.  Oh sure, I know things got a little shaky around mile 5 — but you never had the upper hand.  Because what you don’t know is the level of determination that resides in this 49 year old body — and I was determined that you would not win this one.  So thank you 10K Course, you did your best today, but you helped me learn that I can do anything I set my mind to.

Sincerely,

The One In Purple, Racing Alzheimer’s

PS.  My brain thanks you too!

On your mark, get set . . . . .

GO!  The Shenandoah Apple Blossom 10K is less than 24 hours away!  I know I’m going on about this.  Forgive me.  I can’t help myself.  It’s just that I’m obsessed with running right now, and to me, this little 10K may as well be the Boston Marathon.  I never thought I’d be able to run 3 miles let alone 6.2 miles.  Okay.  I’ll stop.  Please don’t roll your eyes.

Here are a couple 10K photos from a few years ago.

Jake and Uncle Tony 2006
The Leonardis Clan 2008

The girls are missing from these photos, but they’ll be in ’em tomorrow!

 

10K Preview – A Lesson In Humility

Soccer player down on field and in agony
This is exactly how I felt during my practice run.

I’ve been training for a 10K. I’m going into my 7th week of serious training which includes running 3 days a week and strength training on the off days. I’ve been gradually working up my distance and can run 5 miles fairly well even though it’s still pretty tough.

So I figure how much harder can one more mile be? I even started saying things like, “I’ll finish the 10K, it’s just a matter of what my time will be.” I started fantasizing about finishing under an hour or at least 65 minutes. No problem.

Well, I ran the actual 10K course in a practice run today — 2 weeks out — just to see what I’m up against.

I am up against a BEAST.

It’s hard. VERY HARD. It chewed me up and spit me out.

I stopped.
I felt like puking.
I didn’t finish.

It could have been the mostly up hill first mile or the many brutal hills that followed. Or it could have been that I ate almost nothing the day before and then had a big bowl of popcorn before bed. Maybe it was my previous days workout which included a lot of leg work — I did wake up a tad sore. Or maybe it was my over zealous first two miles that I ran waaay tooo fast.

Whatever the reason, (all of which WILL be addressed for the official run), I now bow to the course.

Dear 10K course,

I bow to you. I no longer have a time in mind for finishing. My new goal is to just FINISH. And, I will be ecstatic if I can finish you without stopping. I will take it easy and honor your many deceitful ascents knowing that if I barrel up them, I will die later. I will honor your distance — I swear you are longer than 6.2 miles. But know this, I will be prepared and I will be ready. I will be stronger and healthier when we meet again. I bow to you 10K course, but prepare to be trampled!

Sincerely,

The One In Purple, Racing Alzheimer’s

*Note — this post was written 2 weeks ago while my website was under construction.  The 10K is on May 5th, 2 days away from this posting!  Yeah, I’m ready.  BRING IT!!!

Also, check out the Shenandoah Apple Blossom Festival!  It features the longest parade east of the MississippiFour. Hours. Long.