Gratitude – Racing Alzheimer's

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

Scan 22 — In the backyard on one of our favorite toys -- the "Whirley Bird" that our dad had just put together.

I’ve been playing Scrabble

photo-31 — 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.

photo-33 — 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.

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.

photo-2 — "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 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.

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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.

Finding The Happy on September 11th

My mother was born on September 11th, 1937. And for most of her life, it was a beautiful day for a birthday.

You know how it’s easier to remember events that have an emotional attachment to them? This is called explicit memory and this “emotional memory” seems especially evident in people who suffer from dementia — or maybe it’s just more noticeable, because most everything else is forgotten.

For example, my parents witnessed a tornado barrel through my mom’s hometown in 2010. That event had such an emotional impact on my mother, that she talked about it for a couple of years afterwards to anyone who would listen.

Similarly, you probably remember where you were when you learned that planes had hit the World Trade Center. I was in my home, and when the first building went down, I was on my knees. Like so many, this day and these images are burned in our memories to stay.

Mom remembered this day too and she knew that her happy day was also a sad day. With teary-eyes and her hand over her mouth, mom felt the sadness and knew that her day didn’t belong to just her anymore. She couldn’t articulate specifics, but she didn’t forget the enormity of the day, even as her Alzheimer’s progressed.

Emotional memories stay long after other memories go.

We slow down on September 11th to remember and pay tribute to the lives lost on this tragic day in 2001. We will never forget. But on this day that was once an ordinary autumn day with birthdays and falling leaves, I will also honor my mother by finding the happy, and by remembering all that is good in the world. My mother would like that.

Happy birthday mom — it’s a beautiful day.

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

The Vanishing

The strangest thing about the death of my mother is the vanishing. That a person can be on this earth one minute and gone the next, seems like a cruel magic trick that I’m still trying to figure out. As I reflect on her disappearance, I realize the slight of hand happened years ago and the vanishing was just the grand finale.

Dementia is a terminal brain disease.

I knew this but I didn’t know it. Terminal is just a word I used to add weight and truth to mom’s disease because you’d be surprised at how many people don’t know this. So I said it to help raise awareness and educate, and to help me say out loud in a euphemistic way — my mother is dying.

I thought I was prepared, even ready for my mother’s death. But it was the concept of her death I was ready for, not the real thing. In the beginning, “has dementia, will die” was loud and clear in my subconscious, then towards the end my concept was that death would be a kindness that couldn’t come soon enough.

But vanishing from the face of the earth?

It may have helped if I had replaced the word die with vanish and had been saying things like “my mother is vanishing from dementia,” or “my mother is receiving hospice care and could vanish in three to six months.”

A friend warned me about this. She said “you may think you’re ready, but when your mom dies it will feel like you’ve been hit by a truck.” I believed her, but “hit by a truck” was another abstract concept. Another friend said the death of a parent is a “ground-shifting sadness.” This rings true as I try to find my footing on this new and shaky ground.

My mother vanished last month.

I’m sad, but I’ll be okay — I’m just a little surprised at the size of the truck.

~ Joanne

Mom’s Remembrance

DSCN0873 — 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.

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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