On October 12, 2020, my mom would have celebrated her 84th birthday. When I see healthy, vibrant seniors around that age, I can’t help but imagine what Mom would have been like if Alzheimer’s hadn’t gotten in the way.
In the eight years since her death, we’ve come a long way in terms of shining the light on this disease and bringing it out of the shadows. While a certain level of stigma still exists, people are talking much more openly about their personal experiences, many families are asking for help, and progress is being made in terms of the general public understanding the importance of early diagnosis.
Although we don’t always hear about it, encouraging work is being done in research labs across America and the world. I recently attended a Cure Alzheimer’s Zoom call and heard leading researcher Dr. Rudy Tanzi discuss many studies currently underway. That call served as a reminder that forward progress is being made each and every day. Hope is alive.
Back in 2016, I founded Marilyn’s Legacy because I wanted to keep my mom’s memory alive, and I needed a way to give purpose to everything we had been through. I needed to know something positive resulted from the suffering Mom endured. Because of our many generous supporters, in five years of existence, over $19,000 in donations have been directed to UsAgainstAlzheimer’s, the Cure Alzheimer’s Fund, The Ohio State University Alzheimer’s Fund in Neurology, the HFC (formerly Hilarity for Charity) Caregiver Respite Grant Program, and the National Church Residences Hospice Caregiver Support Program (earmarked for dementia families). I’m very proud of what we’ve accomplished, but there is always more to do.
Families of the over 5 million Americans current living with Alzheimer’s and other forms of dementia are facing challenges the likes of which many cannot fathom. No two days are the same and it is an experience that defies all logic.
Losing a lifetime of memories would certainly be horrendous on its own, but that merely scratches the surface when it comes to these diseases. Severe agitation, paranoia, verbally and physically abusive behaviors, delusions, hallucinations, loss of ability to speak, inability to manage the activities of daily living, and eventually inability to swallow – as time goes on, these symptoms and others can become commonplace.
As we mark Mom’s 84th birthday, we hope you might consider making a one-time or recurring tax-deductible contribution to this, our 5th annual giving campaign. To do so, please visit http://marilynslegacy.org/donate.
Other ways to help:
Amazon Smile. When shopping Amazon, please use our Amazon Smile link: http://smile.amazon.com/ch/81-1813012. By your taking this simple action, Amazon will make a donation to Marilyn’s Legacy and it won’t cost you a dime! Bookmark our link and use it each time you shop!
Alzheimer’s Semipostal Stamp. Thanks to the tireless efforts of advocates Kathy Siggins and Lynda Everman, the Alzheimer’s stamp has returned. Before being withdrawn in 2017, the stamp had generated over $1.0 million for NIH supported research. Stamps are available for purchase at most post offices, online at https://store.usps.com/store/product/buy-stamps/alzheimers-S_564204 and by phone at 1-800-STAMP-24. Get yours today! For additional information, please check out this fantastic blog post by Carlen Maddux.
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Thank you for taking the time to visit The Long and Winding Road. We’re grateful for your support! May you and yours remain safe and healthy during the coming weeks and months.
There’s one Thanksgiving that is forever etched in my mind for all the wrong reasons. Although it occurred eight years ago, in many ways, it feels like yesterday. When I think of the November holiday that I once looked so forward to, the first image that comes to mind is from 2010.
Of course, at some point, my subconscious went off the rails – thus the dreaded idyllic vision. I’m sure memories of beautiful holidays complete with cherished traditions, found their way into the mix. Without even realizing it, I had set myself up for disappointment, profound sadness, anger, grief, and a dozen other emotions. Naturally, there was no way this Thanksgiving could be compared to or measured against those blissful memories.
Rather than working to create a holiday just like those of years gone by, focus on the current reality. Remember that too many people, a lot of noise and commotion, and sudden changes to routines can really throw your loved one for a loop. Plan accordingly. Spending quality time together and making cherished memories – when it’s all said and done, those things are much more important than setting an impeccable table or serving a perfectly plump juicy bird at 4pm sharp. Flexibility is your friend and goes hand in hand with maintaining reasonable expectations.
The Long and Winding Road... 