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.

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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

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

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 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

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 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.