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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Inspiration

Personhood: The True Essence Remains

19 Saturday May 2018

Posted by Ann Napoletan in Advocacy and Awareness, Face of Alzheimer's, Inspiration, Marilyn's Legacy, Mom

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Tags

alzheimers, alzheimers awareness, dementia, Mom, personhood

Personhood. It’s important to know and always remember that the person living with dementia never loses their true essence.

All of these photos were taken during the course of our Alzheimer’s journey, some very early on and others in the final years. Although the painful moments became more frequent and lasted longer as the disease progressed, and despite the delusions, paranoia, hallucinations, agitation, anger, depression, and episodes of acting out, Mom never stopped showing us little reminders that she was still very much “in there.”

Long after she lost the ability to communicate verbally, she found ways to joke and playfully tease. With time, it took more effort to reach her, but when we did, her mannerisms, gestures, and facial expressions told us she was very much “Still Marilyn.”

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Mom Day 2017

16 Saturday Dec 2017

Posted by Ann Napoletan in Face of Alzheimer's, Grieving, Holidays, Inspiration, Life After Caregiving, Mom, Ruminations, Saying Goodbye

≈ 10 Comments

Tags

alzheimers, dementia, grief and loss, grieving, holiday memories, mom day, remembering mom

Five years ago, today, my mom became whole again. She found peace after a long, valiant battle against Alzheimer’s. She gained her angel wings. December 15, 2012.

I try to take this day off every year. I prefer to spend it quietly, alone or with my daughter, allowing my mind to go where it will. If tears come, let them come; I really don’t want to be distracted by the minutia of the outside world, nor do I want to hide my emotions whatever they may be.

I started the day with a cup of hot coffee enhanced with a generous pour of Bailey’s – one of my mom’s favorite things!  I planned to spend the day baking as I often have on this day over the past five years. Some of my best, happiest (and earliest) memories are of December days spent baking Christmas cookies.

Mom loved to bake and when I was a child, the variety of beautiful cookies on her holiday trays was something to behold. Her cookies were part of the magic of Christmas. My love of baking is no doubt a result of those fond memories and of course, her influence. For years I’ve enjoyed recreating many of the recipes that have been handed down for generations, as well as adding some new ones.

I didn’t rush today. I didn’t get as much done as I had planned, but I really enjoyed the day. I listened to Christmas music, wrapped some presents, had lunch with Jess (sharing some laughs as we always do), and spent a good bit of time simply sitting with my thoughts. I cried and I smiled, thinking of years gone by, and tonight, I poured a glass of wine in her memory.

Another year has passed, and this year, I lost my dad as well. This will be my sixth Christmas without Mom and first without Dad. I’m sad, but there are also moments of peace in knowing they are with their beloved parents and others who have gone before them – the ones they loved so much. Most importantly, they are free of pain. And today, I felt both of them with me…

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When It’s Time to Say Goodbye

14 Thursday Dec 2017

Posted by Ann Napoletan in Grieving, Inspiration, Mom, Reblog, Ruminations, Saying Goodbye

≈ 3 Comments

Tags

bucket list, death and dying, end of life, grief, grieving

This is a piece I wrote back in 2011. It isn’t specifically about Alzheimer’s, but it is about life, a topic I’ve spent a significant amount of time ruminating on this year.

Tomorrow marks the 5th anniversary of my mom’s passing, and Christmas will mark the 6th anniversary of my dear friend’s mother’s passing. I saw “G” tonight, which is what prompted me to go back and pull this from the archives so I could re-read it.

I hope Evey’s story touches your heart….

December 28, 2011

Tonight I went to calling hours.  Our dear family friends of 20+ years lost their mother/grandmother on Christmas Day.  She had finally succumbed to cancer after a long, valiant battle.

I’m 46 years old, and I still never know what to say at times like this.  Nothing sounds right. Nothing. I guess all you can do is hope that the presence of friends helps to ease the pain, if just a tiny bit.

After talking to my friend tonight at the church, I found myself feeling oddly inspired. As she described their last trip to Florida this fall, she told me that her mother had completed everything on her bucket list.  Every.single.thing.  I wonder how many people can say that.

The last thing on the list was the celebration of her 62nd wedding anniversary, and she made it.  She marked that milestone and celebrated with her loving husband just a week before she left this earth.  She was well enough for them to go out to dinner and enjoy a lovely date night, which I imagine will remain one of his most treasured memories of her.

I have to say, I’m not much of a believer in happily ever afters when it comes to marriage, but G’s parents definitely seemed to defy the odds and find true, everlasting love.  Their entire family will be in my prayers, but particularly G’s dad who is now faced with adjusting to life alone after so many years with his soul mate.  I’m sure, though, that she won’t be far – watching over him day and night until they meet again.

In the end, Evey did what we should all strive to do.  One by one, she crossed every single item off of her bucket list.  When she finished, she was ready to take the next journey, having done everything she was meant to do here on earth…

What’s on your bucket list?  Have you thought about it?  Have you said the things you need to say and done the things you need to do?  Tomorrow isn’t promised.  We all need to get busy, don’t we?  Thank you, beautiful Evey, for the inspiring reminder…

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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!!

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