My Story: Alzheimer’s Advocacy

This is a very tough post for me to put out there.  I am very hesitant to even share this online.  However, there is something deep within me, telling me to share my story.  Even if it is to help someone else who is struggling, watching a loved one suffer from this horrible disease, or to bring awareness to Alzheimer’s disease.

My mother has early onset Alzheimer’s disease.  There I said it.  Pull the band aid off quick and it won’t hurt.  Truth is it hurts like hell. She has yet to be officially diagnosed.  However watching her mother, my Grandmother, have the disease for 10 years and my paternal Grandmother have Dementia – I don’t need a doctor telling me what is happening.

Mom and Me

Mom and I at our Wedding Rehearsal Dinner. These were much happier times, but the signs were starting to appear back in June 2012.

She is 62 years old.  There are many layers to her situation that I may or may not dig into them with this blog.  She is on medication, her doctor is in touch with the situation, and my Dad and I are doing the best we can do to guide her through this scary time.

I am not writing this post looking for sympathy.  I am looking for a solution.

I have always been the type to find the resolution to a problem and to fix it.  Right now, this isn’t fixable.  So I will put my own insecurities aside.  I will stare down this evil disease in the eye, and do my best to bring awareness to finding a cure.

“Alzheimer’s is the 6th leading cause of death in the United States.  Those with Alzheimer’s live an average of 8 years after their symptoms become noticeable to others, but survival can range from 4 to 20 years, depending on age and other health conditions. (www.alz.org)

It is my hope that with enough awareness and funding a cure can be found sooner rather than later.

As Julianne Moore shared during her Academy Award acceptance speech for Best Actress for ‘Still Alice’,

“I am thrilled to be able to shine a light on Alzheimer’s disease.  So many people with this disease feel isolated and marginalized.  One of the wonderful things about movies, it makes us feel seen and not alone.  People with Alzheimer’s deserve to be seen so that we can find a cure.”

 

 

Exactly 4 years to the date, my maternal Grandmother died of Pneumonia.  I hate to say it was a blessing, but it was something I wished for, for a very long time.  Wasting away in a nursing home, confused is not the way to live.  It is harder on the family of loved ones that suffer from Alzheimer’s disease.  The last few years were very tough as we watched her slowly fade in front of our very own eyes.  My own parents would visit her twice a week, to sit by her side and be there for her.  Whether Nana knew it or not.  I never realized the amount of strength and grace it took for my own Mother to do that, until now.

As for my Mother, something hasn’t be right for a while.  She had a medical scare in 2012 that set off a series of events that led to this.  I spent my 29th birthday in a Neurologist’s office, by her side as she sat through a 2 hour memory exam.

To my family members and friends who have known something is up.  My Father, Chuck and I were honoring my Mother’s wishes to keep it quiet.  When the confusion began, she didn’t want others to know.  Now it cannot be hidden.

Last weekend, while visiting my parents’, my Mother asked if it was true that her Mother had passed away.  Have you ever felt what it is like to be punched in the gut?  Now I know.  There were no tears from her, she was almost detached from the truth.  I had to tell my own mother, as if she were a little child, that everything would be okay.

I know this won’t get easier.  If anything it has taught me to be more present and enjoy life’s moments now.  

But:

I will not let my Mother’s memories (or my Grandmothers’ memories) go in vain.  

I will be strong for her.  

I will be her memory when she needs it.

I refuse to not try something.

My strength lies within my writing.  So here is our story as a family, as we proceed through this difficult phase of life.  Whether it results in self-healing, helping others’ or raise awareness, I hope our story can shed light on this horrific disease.

We need to be the voice and advocate for those who suffer from Alzheimer’s. Because to quickly they lose their own voice and ability to advocate for themselves.

If I have touched you in any way with our story, please, please, please donate.

Video Source: OscarsTV2015 YouTube

Comments (8)

  1. sara

    This post is a great example of strength and love. Thank you for sharing.

  2. Jeannine (Post author)

    Thank you Sara. It was really hard to write and share but I feel our story needs to be heard. Whatever may be the outcome.

  3. Linkouture

    Oh, Jeannine, my heart goes out to you and your family. My grandmother had dementia and it was hard to see her her memory go. Thankfully she was quite happy but it was hard for her to not know who people were, and I’m sure it was particularly difficult for my dad and aunt. I am sure they felt the same relief you did with your grandmother. I do hope they are able to find more before it’s too late.

  4. Jeannine (Post author)

    Thanks for the kind words Bev. It really makes you re-evaluate so many things in your life. Suddenly situations that bothered you seem so petty compared to the big picture of life. She has her moments of sadness and confusion but we are pretty good about flipping her mood.

  5. Joanna

    In tears reading this. It takes a lot of strength to watch someone you love go through something so terrible. I watched my own father deteriorate quickly as he lost a hard battle to cancer and that will forever be etched in my mind. But I love what you said about “staying strong” and “not letting their memory die in vain”. Sending thoughts and prayers your way!

  6. Jeannine (Post author)

    Thanks Joanna. I appreciate the kinds words and the support. I am so sorry to hear about your Father. It really puts life into perspective. Literally, “What doesn’t kill us makes us stronger”

  7. christieselken

    I know you’re not looking for sympathy, but my heart still breaks for you. My grandmother suffered with this, and it can be hard to watch someone you love turn into a different person. It is my prayer that a cure is found soon. Thanks for sharing your story with us at Totally Terrific Tuesday to increase awareness of this terrible disease.

  8. Jeannine (Post author)

    Thank you Christie. Your kind words do bring comfort. It is a really terrible disease, like you said to watch the person/people you love transform into something completely different. I have seen it with both grandmothers but am much more mature and it is much closer to my heart. I just remind myself to be her memory since hers isn’t working. That is how I remain patient and that is what gets me through the situation.

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