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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Mom

Happy 84th Birthday, Mom.

11 Sunday Oct 2020

Posted by Ann Napoletan in Advocacy and Awareness, Fundraising, Life After Caregiving, Marilyn's Legacy, Mom

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alzheimers, dementia, marilyns legacy


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.

Share this post. A quick share of this post to your social media channels is a great way to help spread the word!

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.

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Mother’s Day in Heaven

10 Sunday May 2020

Posted by Ann Napoletan in Caregivers, Grieving, Life After Caregiving, Mom, Mother's Day

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Happy Mother’s Day to my beautiful Mother in Heaven, and special blessings to all who are missing their own mothers today and every day.

These photos taken at Eason House are some of my favorites from one of my most memorable Mother’s Days. Mom was having such a good day and I see so many glimpses of the old Marilyn in the images.  Oh how she loved her sweet treats, and she sure enjoyed her fudgsicle that day.

This morning, I sat quietly for a few minutes and felt her loving presence surrounding me…

Eight Mother’s Days without her.

 

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Alzheimer’s, Thanksgiving, and Expectations

21 Wednesday Nov 2018

Posted by Ann Napoletan in Caregivers, Expectations, Holidays, Mom, Ruminations, Tips

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Tags

alzheimers, alzheimers holiday tips, caregiving, caregiving at the holidays, dementia, holiday stress, holidays with alzheimers, thanksgiving, thanksgiving with alzheimers

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.

As I thought about writing this post and what tips I might offer to help you make the most of your holiday, I found myself overwhelmed. It took several days of contemplation for me to come to the realization that it really all boils down to one simple – yet extremely difficult – concept.

Expectations.

Weeks before that fateful Thanksgiving in 2010, I had unwittingly crafted an idyllic vision of how it would go. This wasn’t deliberate, but my subconscious went to work on how the day would unfold, what the preparation would look like, how the meal would come together, and most importantly, how my mom would be that day – her mood, frame of mind, level of agitation, ability and desire to participate, and all the other things that go along with Alzheimer’s.

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.

In this particular case, our reality bore no resemblance to idyllic. Mom was having a bad day.  A very bad day.

That evening, I, along with Mom’s two caregivers and my daughter sat down to Thanksgiving dinner. By then, the food was cold, and my stomach was in a million knots. My dear mother was pacing and screaming as she had been all day. She was utterly inconsolable. Severe aphasia had long ago robbed her of the ability to communicate verbally, leaving her unable to express what was bothering her – or anything else, for that matter.

To Mom, that Thursday was just another day. It wasn’t her fault; it wasn’t anyone’s fault. It was this damn disease, all part of the unexpected hand we’d been dealt. Simply put, the picture-perfect holiday I had envisioned dissolved into a pool of tears and when it was over, I swore off all future Thanksgivings.

I could close by listing my top 10 tips for a successful holiday celebration, but instead, I’ll gently remind you to be careful of your expectations. Keep them reasonable. Check yourself along the way and make sure your subconscious isn’t taking over and creating an expectation that the day can’t possibly meet.

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.

It sounds cliché, but the past is in the past, and today is all we have. Try to go with the flow, relax, and create moments of joy wherever you can. Treasure the simple things – an unexpected smile, warm hug, or the expression on his face when he tastes a favorite dish that just might trigger a moment of clarity.

Here’s wishing you a blessed Thanksgiving with the people who mean the most to you. And, don’t forget to be gentle with yourself…

 

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The Long and Winding Road

Between 2009 and 2015, Marilyn’s Mighty Memory Makers have raised over $22,000 in the fight to #ENDALZ! To all who have supported us, THANK YOU!!

Marilyn, BA (before Alzheimer's)

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Recent Posts

  • June 7, 2021: A Historic Day
  • UsAgainstAlzheimer’s National Alzheimer’s Summit: Don’t Miss It!
  • Happy 84th Birthday, Mom.
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  • World Alzheimer’s Month

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