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.

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

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.

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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

2013 Alzheimer’s Disease Facts & Figures Report

1 in 3 seniors dies with Alzheimer's or another dementia.

The Alzheimer’s Association’s 2013 Facts & Figures Report came out yesterday.  It’s not good.  Unlike other disease with decreasing numbers that are being managed or cured, Alzheimer’s disease has growing numbers without a cure or the ability to manage the disease.

Quite frankly, I don’t have the energy to get into what we need to do to mitigate the Alzheimer’s tsunami heading our way.  It’s all been said before, and I wouldn’t have anything new to add.  Besides, I couldn’t say it any better than Nancy Wurtzel in “Dating Dementia” where she succinctly describes where we’re at and where we’re headed.  She also offers practical advice when she says:

We’ll need many more medical personnel and facilities.  We’ll need more education and understanding of the realities of dementia.  We’ll need to provide tangible support to the caregivers who are on the front line.  We’ll need ways to improve the lives of those living with Alzheimer’s disease.

I will say this — this country is in big trouble if we don’t make substantial advances on all fronts.  We’ve been warned.   We know what’s coming if a cure isn’t found.  Like Nancy says, “a big plan is required and it will take commitment and innovation.”  At the very least, let’s not act surprised when the tsunami hits.

You know the saying “hope for the best, but plan for the worst?”
With Alzheimer’s disease, the hope is in the plan.

 

If It’s Not Alzheimer’s, What Is It?

A jumbled up puzzleIn “Mom Update: February 2013” I wrote about how quickly mom’s disease is progressing and how it might be something in addition to or instead of Alzheimer’s disease.

Oh we’ve been calling it Alzheimer’s disease, but the truth is — we don’t know what mom has.  Mom had an MRI in 2006 that ruled out other brain problems like a stroke or a tumor, but we never received a definitive diagnosis — just “probable Alzheimer’s.”

With Alzheimer’s making up the majority of all dementia cases, it’s an easy diagnosis to go along with.  Add that my grandmother and great-grandmother “had Alzheimer’s,” and you can see how believing the diagnosis was even easier.

But we didn’t really know what my grandmother and great-grandmother had.  And we don’t really know what mom has.

The doctor jumped to a conclusion and so did we.

There is plenty written about the misdiagnosis of Alzheimer’s disease including a 2011 study that found half of Alzheimer’s cases are misdiagnosed.   With Alzheimer’s making up most of all dementia cases, and given that it can’t accurately be diagnosed until after death, probable Alzheimer’s is an all too common diagnosis doctors make.

Another article titled “What Type of Dementia Is It?” outlines the importance of getting an accurate diagnosis in an effort to provide the best care.  There are over twenty different types of dementia including rare forms — one of which my mother might have.

I feel a little foolish and naive about not questioning mom’s diagnosis.

It’s too late for diagnostic testing on my mom.  She would need to be sedated to get an accurate brain scan — and sedation and dementia don’t mix well, quite often causing further decline.

If we want to know what mom has, at this point, there is only one way to find out — an autopsy.

Autopsy is a scary word, and scary to think about.  But I’ll be thinking about it.

How important is it to know what mom has?  How will we benefit from knowing?  What’s the downside of not knowing?

Have you had to make this type of decision before?

A Pacemaker For The Brain?

A “pacemaker for the brain” to help slow Alzheimer’s and retrieve memories is all over the news right now.  Researchers used Deep Brain Stimulation (DBS) on a man back in 2003 that seemed to unlock old memories.  This led them to think about the memory loss in an Alzheimer’s brain, and if this method could perhaps help those inflicted with this disease.  “Implanting electrodes into the brain isn’t new” says USA Today article, but it’s new for the Alzheimer’s brain.

The potential for science curing Alzheimer’s, cancer, and other diseases is encouraging and even exciting, but the idea of putting electrodes in the brain to cure a sick brain, while it does have merits, seems a little backwards.  This endeavor highlights two things:

1.  How incredibly amazing our bodies and brains are.  The Alzheimer’s brain is a sick brain.  The beta amyloid plaques and tangles are our brain’s response to something not right.  Our body knows why the plaque builds up, but scientists do not.

2.  How science and the medical profession is so focused on easing our symptoms rather than finding the root cause of our physical maladies.  It seems a new drug, or an electrode in this case, is the focus rather than preventing the disease in the first place.

Now I realize some people are trying to find a cure for Alzheimer’s and other diseases, but for the most part, drug therapies are being promoted for just about everything.  In fact, drugs to “fix” our symptoms are so prevalent and profitable, that I would imagine curing our diseases would not be a smart business move.  So I don’t know — are there more folks working on preventing and curing diseases or on developing responses to diseases?

There’s a lot of talk lately on inflammation and how it could be the root cause of many diseases, and I’ve heard that Alzheimer’s is “inflammation of the brain.”  So when I think of the electrodes being implanted in a brain, I picture a car battery that needs to be jumped, but the terminals are full of gunk.  We can jump the car through the gunk, or we can clean off the gunk and start the car on it’s own.

I hope more people are working to clear the gunk rather than working on making more jumper cables.

* Disclaimer:  I do not mean to offend anyone currently on a drug therapy — drugs are needed and helpful in many cases.  I just hope we are focused on curing diseases rather than just managing their symptoms.

Preventing Alzheimer’s Disease: What Do We Know?

The National Institute on Aging, part of the NIH has just published a 24-page booklet about Alzheimer’s disease — what it is, prevention strategies and what we can do to help fight this disease.   It’s a general overview that’s easy to read for those of you who may be in your own race.

Preventing Alzheimer’s Disease:  What Do We Know?

 

10 Ways To Keep Your Brain Sharp

When I read or hear news confirming the possibility of preventing or delaying Alzheimer’s I am renewed with hope!  The idea that my future can be influenced by the choices I make today is pretty powerful and it helps me stay the course of being an Alzheimer’s Warrior.

That’s why I love this recent article in the Minneapolis Star Tribune titled “10 Ways To Keep Your Brain Sharp.” It offers clear and simple ways to love your brain, with exercise being the top two.   GET MOVING is #1 and says, “If you do only one thing to keep your brain young, exercise.”  This is my motivation — nothing has given me a better reason to lace up and break a sweat.  PUMP IRON is #2 on the list.   I don’t pump iron.  Yet.

The bonus?   A healthy brain is just ONE of the benefits of following this list.

Go to “10 Ways To Keep Your Brain Sharp” to learn more.

What are you doing to keep YOUR brain healthy?