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.

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Comments

  1. Bakhus Saba says:

    Still a Child

    If you knew what I was going through,
    You’d approve of what I had to do.
    Putting you away for the rest of your days,
    Plays on my heart and it tears me apart

    I walk away with you on my mind,
    It’s killing me to leave you behind.
    You’re begging me to take you home,
    But I feel so guilty because I leave alone.

    Chorus

    Cause I’m still a child when I look in your eyes.
    And it make me cry and it make me cry
    Now every hello feels like I’m saying goodbye
    Goodbye good bye good bye

    If I could have you back for one more day.
    Would you reassure me what I’m doing is okay
    Would you comfort me and ease my mind,
    Alzheimer’s/knows no Borders is in Memory for all who have fought Alzheimer’s and lost a courageous battle, for all who are bravely fighting Alzheimer’s now, and lastly for all who will face Alzheimer in the future and with the hope there is a cure for them Thank you for all your support , Bakhus http://www.youtube.com/watch?v=mj_2Q9jzmlE&feature=youtu.be

    • Joanne Leonardis says:

      Bakhus, that is a beautiful video tribute that I haven’t seen before. I’m sorry for the loss of your mom Annie — and for all the other losses then and now as this disease marches forward without a cure. Thank you Bakhus, may we both find peace. ~ Joanne

  2. What a lovely piece…. and it really hit home for me. Your mom and mine were on a very similar timeline. Although there had been earlier signs, we knew something was really wrong at the beginning of 2004. She had just turned 67 the previous October. She passed away on Dec 15, 2012, two months after her 76th birthday. Hugs to you…. Thank you for sharing your story. xo

    • Joanne Leonardis says:

      Hi Ann, thank you, I’m glad you liked it. I remember talking with you earlier about our similar paths. Our mothers seemed so young didn’t they? But then this disease is hitting people younger and younger — it’s frightening. I’m sorry for your loss not so long ago, and you’ll be coming up to a one-year anniversary — in December of all months. Hugs back to you Ann. Be well, and hang on to the good memories. xo

  3. Pam Rogers says:

    My beloved dad is in final stage Alzheimer’s, he can no longer walk or communicate but every now and then he recognizes me, it is very fleeting but I wait everyday for that moment of joy and utter sorrow. I miss him so much and am so angry that he has to suffer and he and my mom have been robbed of their golden years together.

    • Joanne Leonardis says:

      Hi Pam — it’s hard not to be angry, it’s such a cruel disease. I’m so sorry you’re in this stage right now with your dad. Touch, music, & love is such a precious way to communicate at this difficult stage, but still so hard when that’s all there is. I used to miss my mom when I was with her too. I’m sending you a hug and a wish for peace for the both of you. Enjoy your father while he’s here — the end stage, while difficult, has gifts for you. ~ Joanne

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