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Robin Perini's tribute page:
My Mom's Story
It started with a few subtle changes. Mom wasn't able to remember which present was whose under the Christmas tree (something she'd always been able to do). It could have been normal aging, but it wasn't.
It was several years before she was diagnosed. Multiple doctor visits, some false hope, but deep inside I think we knew.
When the diagnosis finally came, I wish I could say I was surprised. I think sometimes family knows first.
Mom immediately went on several drugs available, took part in some clinical studies, and our family had a lot of great years. Not the same as before, of course, but good.
My relationship with my mother changed, but I also learned a very valuable lesson. Not to wish for what might have been, could have been, and in truth, should have been. To be thankful for what I have, and not what I don't have. It's an attitude that has helped us survive.
About two years ago, the medication stopped working. Mom went from stage two to stage seven within a matter of months. Our lives changed. She went from flying to visit the grandkids, to being unable to speak or do the majority of daily tasks.
So life changed. And yet, a few moments of clarity here and there allow me to glimpse my mom. Luckily she and my dad live nearby and I am able to help my father care for her. My dad is amazing and his love and devotion to her humble me on a daily basis.
My mother’s journey has been a long one, and my family would not have survived without our faith, friends, and the support of the Alzheimer’s Association. The local chapter has provided us with knowledge, support, and understanding, and I cannot express my gratitude enough to everyone who has touched our lives.
They are why I set up this tribute page. They, more than anyone, have taught us that we are not alone in this journey. And neither are you!
If you or a loved one is battling Alzheimer's or another dementia, please reach out. You are not alone.
With Mom in the final stage now, I have learned how very valuable our memories are. Please consider joining me in the
1) Encourage sharing of memories with others before they are lost
2) Increase awareness of Alzheimer's Disease, those living with this illness and their caregivers.
3) Encourage donations to the Alzheimer's Association and other organizations that support the vision of a world without Alzheimer's.
I pray for that day!
What is this challenge?
One of Alzheimer's most devastating impacts is the loss of memory. I wish that I could ask my mother questions and that she could share her memories with me. I challenge each of you to share a memory that you might want share with yourself should you lose the ability to remember or that you wish to share with your friends and family. OR, perhaps you'd like to share a question or something you wish you could do with someone whose memory has failed.
How does it work?
1) Record a memory through a video, photo and/or writing a story and post it on social media.
2) Challenge 2-5 others to share a memory and tag them.
3) Give them 24 hours to accomplish the challenge or to donate to the Alzheimer's Association (or another organization).
FACEBOOK - http://www.facebook.com/1MemoryChallenge/
TWITTER - http://twitter.com/1MemoryChalleng
PINTEREST - http://www.pinterest.com/robinperini/1memorychallenge/
INSTAGRAM - http://www.instagram.com/robinperini/
Website - http://www.robinperini.com/1-memory-challenge/
Alzheimer's Association - http://www.alz.org/join_the_cause_donate.aspJoin
Inspiration to Act
I was inspired.
Over the years of my mother's journey, so many amazing people have come into our lives, particularly from our local Alzheimer's Association Chapter. I was inspired to join the Walk to End Alzheimer's in 2015.
At that walk, a sixteen-year-old girl spoke about her fundraising efforts. She hosted a spaghetti dinner and raised over $4000 for the Walk and in honor of her grandmother. Now, I didn't particularly want to host a dinner, but...this young woman's actions got me to thinking. What can I do?
I am a writer. I write fiction novels, so I decided to use this skill as a fundraiser.
My novel Forgotten Secrets was inspired in many ways by witnessing my mother’s battle with Alzheimer’s disease. Our family has learned to cherish and embrace the small moments of joy even as we navigate through the tears. If we have learned one truth, it is to be thankful for what we still have, and not to wish for what used to be.
The fictional story I wrote is not a story about Alzheimer's, but I created a character with Alzheimer's who plays a critical part in the story as the witness to a murder. My hope is to entertain, educate and increase awareness of Alzheimer's and provide a glimpse of insight into those of us who are living with and caring for loved ones who battle this devastating disease.
In addition, I am donating 10 percent of the royalties I receive from Forgotten Secrets to the Alzheimer’s Association in honor of my mother, my father, and all those who support them as they travel this difficult road. The Alzheimer’s Association’s vision is a world without Alzheimer’s, and I pray for that day.
I plan to continue this effort with more novels as well. If you wish to learn more, feel free to visit my website at http://www.robinperini.com/forgotten-secrets/.
Here's to a world without Alzheimer's!
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