Meet Marilyn
26 Sunday Jun 2016
Posted in Advocacy and Awareness, Face of Alzheimer's, Facts & Figures, Marilyn's Legacy, Mom, Video
26 Sunday Jun 2016
Posted in Advocacy and Awareness, Face of Alzheimer's, Facts & Figures, Marilyn's Legacy, Mom, Video
01 Wednesday Jun 2016
Tags
#endalz, alzheimer's & brain awareness month, alzheimers, Alzheimers advocacy, alzheimers awareness, dementia
June is upon us, and with the month of the summer solstice comes Alzheimer’s & Brain Awareness Month! It’s the perfect time to get involved in the fight to end this horrific disease, and here are a few ways to do just that.

Learn about Alzheimer’s and then help educate others!
Give of your time! Contact your local Alzheimer’s Association chapter to find out how you can get involved. If that isn’t in your wheelhouse, reach out to a nearby memory care community. I promise that what you give will come back to you tenfold (and then some!) every single time. No special talents needed. If you’re capable of sitting and holding someone’s hand, you’re qualified!!
Add your voice to the growing movement calling for an Alzheimer’s semipostal (fundraising) stamp. Take just a moment to encourage the Postmaster General to move
forward with a stamp that could raise millions of dollars for Alzheimer’s disease research. The breast cancer stamp has raised over $83 million since its inception! Click the following link to add your encouragement: https://www.uspsoig.gov/blog/putting-stamp-good-causes
You can also reach out to your elected officials, asking them to support increased funding for Alzheimer’s. Consider writing or calling to share your personal story; there’s no better way to underscore just how important an issue is than to put a human face on it. You have the power to do that. If you aren’t sure how to reach your officials, these sites will help:
Do you know someone caring for a loved one who has Alzheimer’s or another form of dementia? Bring them dinner or offer to provide a couple of hours of respite care so they can have a break to do something they enjoy. Drop off some fresh cut flowers or mow their yard. Small acts of kindness go a long way in letting someone know they aren’t alone.
Likewise, if you have a friend or family member living with dementia, please take time to visit them – no matter what stage they are in. Remember that these are living, breathing human beings who need human contact and love as much as you and I. Even if they can’t communicate, they will feel your energy; even if they don’t recognize you, they will relish the company.
Marilyn’s Legacy: A World Without Alzheimer’s is a registered 501(c)(3) non-profit organization dedicated to ending Alzheimer’s and supporting and advocating for family caregivers. Marilyn’s Legacy was borne of a desire to honor my mom’s life and ensure that her battle with this disease was not in vain.
We are partnering with UsAgainstAlzheimer’s and the Cure Alzheimer’s Fund, two non-profits that are recognized leaders in this space. It is very important to us that every dollar raised goes directly to the mission rather than salaries and other operational expenses. The founders of UsAgainstAlzheimer’s and the board of directors of the Cure Alzheimer’s Fund cover every dime of overhead ensuring that 100% of your contribution furthers the fight to END ALZHEIMER’S! When you support Marilyn’s Legacy, you can feel confident that the funds donated are being spent wisely.
To make a tax-deductible contribution, visit our donation page.
The Brain Health Registry is an easy way to contribute to research from the comfort of your home. Participants sign up on a website and complete several questionnaires regarding medical history, lifestyle, and current health.
Once the questionnaires are finished, participants are invited to complete a series of tests that might be likened to brain games. Each activity takes just a few minutes. At 3-6 month intervals, registry members receive email reminders to come back and complete additional activities. The hope is that people will continue to be involved for many years, as the longevity of participation helps researchers understand how our brains change over time.
The researchers behind the Brain Health Registry aspire to use the program to build out a pool, or registry, of potential clinical trial enrollees. The hope is that by collecting data on participants in this fashion, the right people can be assigned to studies faster, ultimately accelerating trials.
To join the Brain Health Registry, visit: http://www.brainhealthregistry.org/
Last but not least, share this post. Shout your message from the rooftops! Encourage your personal network to help #endalz! Remember that our collective voice is bold, powerful, and impossible to ignore. Together we can move our agenda forward and realize a world without Alzheimer’s!
08 Sunday May 2016
Posted in Caregivers, Face of Alzheimer's, Grieving, Holidays, Life After Caregiving, Mom, Mother's Day, Ruminations
I’ve been on edge all week for multiple reasons, one of which was surely the fact that Mother’s Day was everywhere I turned. Tomorrow will be the fourth iteration of this holiday since my mom’s passing. While the cutting pain of fresh loss dulls over time, grief remains. Days pass, then months and years; the pervasive ache is more intense in some moments than others.
While I had my car in for repairs a few nights ago, I lost count of the number of Mother’s Day related images that popped up on the television in the waiting area.
Across from me, a mother and daughter engaged in an animated conversion peppered with laughter for 90 minutes. Even after the daughter’s car was ready, the pair remained in their chosen spot enjoying each other’s company. After 10 minutes or so, I’m ashamed to say I wanted to stand up and scream, “YOUR CAR IS READY – YOU CAN GO NOW!”
Sometimes when I see mothers and daughters out shopping together or enjoying lunch on a sunny restaurant patio, I’m enveloped in a flood of emotions. Happy memories frozen in time, yet sadness for what might have been – even a hint of jealousy. I want to be doing those things with my mom. I always envisioned her as a sassy, spunky, vibrant 70-something. But I had it wrong.

I’m thankful to know she’s in a better place, reunited with those she loved who were waiting for her on the other side. The thought of her beautiful soul now released from a weary body and muddled mind is comforting to be sure, but it doesn’t make me miss her any less. Still, the notion that her spirit is present in every moment and every beat of my heart is reassuring.
Mother’s Day 2016
Dear Mom,
I can hardly believe this will be my fourth Mother’s Day without you. Over the past several months, I’ve realized that in many ways, I miss you now more than ever. Someone suggested it’s because as life moves on, we yearn to share everyday happenings, milestones, joys, and sorrows with that person who was once such a significant part of our world.
I can’t count the number of times I’ve wished I could pick up the phone and talk to you about anything and everything. Trials and tribulations at work, the thrill of life’s most memorable moments, and the sheer joy and pride that comes with being a mom. I miss sharing laughter and tears – and everything in between.
From the mundane to the extraordinary, I just want to sit and share a cup of tea or a few glasses of wine and a long conversation. It’s sad to think of all the things you’ve missed out on, but that realization fuels the fire that burns deep inside me. I’ll continue fighting this battle until we win. Marilyn’s Legacy: A World Without Alzheimer’s – what a day that will be!
With love always,
Ann

Other Mother’s Day Posts
Mother’s Day Reflections: The Journey Continues (05.09.15)
Missing Mama (05.10.14)
And So It Begins: Mother’s Day (04.28.14)
Mother’s Day Memories (05.12.13)
Mother’s Day Blessings (05.12.13)
Dear Mom (05.09.13)
What Is Your Mother’s Legacy – Caregivers.com (05.09.13)
Mother’s Day and Melancholy Moments (05.12.12)