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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Life After Caregiving

Giving Thanks…

30 Sunday Nov 2014

Posted by Ann Napoletan in Advocacy and Awareness, Caregivers, God Winks, Holidays, Hospice, Inspiration, Life After Caregiving, Mom, Quotes, Ruminations, USAgainstAlzheimer's

≈ 7 Comments

Tags

alzheimers, Alzheimers advocacy, caregivers, caregiving, dementia, gratitude, thanksgiving

IMG_3830-beattieThe arrival of the holidays brings a flood of competing emotions for me. Exactly two years ago today, we brought hospice on board. It was a time of both despair and relief; things were changing moment to moment, and we had reached a whole new level of helplessness and desperation.

No matter how hard we fought, it seemed as though Alzheimer’s might be winning. Engaging compassionate hospice professionals brought a measure of comfort to a very uncomfortable situation – comfort in knowing we were surrounded by angels who were not only knowledgable, but also caring and empathetic. They were “all in” from the moment they arrived, and I felt like we were the most important family in the world to them.

Two years ago, we still held onto hope that with the intensive support, loving care, and indisputable expertise of hospice, mom might rebound one more time. However, that wasn’t meant to be. So, Thanksgiving remains a powerful, heart wrenching reminder of those final few weeks…

But this is also a time to reflect on the many blessings that have enriched my life over the past year. First and foremost, of course, are my family, faith, friends, and health. Without these, none of the rest would be possible.

I’m incredibly grateful for the opportunity to touch and be touched by so many caregivers and advocates through this blog, my Facebook page, the USAgainstAlzheimer’s Support Group, and Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias.

I’m grateful to have attended the WomenAgainstAlzheimer’s Out of the Shadows Summit this fall in Washington, DC, to be a founding member of ClergyAgainstAlzheimer’s and a contributor to the group’s first book, Seasons of Caring (December 2014). I’m thankful to have been a member of the steering committee for our local Walk to End Alzheimer’s and for the friends and supporters that generously contributed to our team, Marilyn’s Mighty Memory Makers.

I’ve crossed paths with some of the most passionate, inspiring people on the planet and been presented with countless opportunities to make a difference over the past year. I took a leap of faith, leaving the company I’d been with for almost 27 years, to join an organization with a strong mission I believe in. Five months later, I can say with confidence it was the right move and I’m finally where I was meant to be. For those things, I’m grateful.

I’m thankful I have been able to keep my mom’s memory alive, and that her spirit shines brightly on the world every single day. I’m thankful she’s still teaching me new lessons, inspiring me, and that she continues to touch thousands of lives. And I’m thankful to feel her presence on a regular basis.

To say I’m blessed is an understatement, but oh how I miss my mama.

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Leaning Into Love: A Book About Love, Loss, Grief, and Rebirth

02 Sunday Nov 2014

Posted by Ann Napoletan in Books, Caregivers, Grieving, Helpful Resources, Inspiration, Life After Caregiving, Saying Goodbye

≈ 4 Comments

Tags

bereavement, elaine mansfield, grief, grieving, leaning into love

I met Elaine Mansfield just before my mom’s death. I can’t remember the exact circumstances, but somehow through a friend of a friend on Facebook. There are some people you’re immediately drawn to; you don’t know why, but you feel as though your souls are connected in some mystifying way. It’s as if you’ve known them for years. That’s how I feel about Elaine.

 

Elaine & Vic:  A Love Story

Slowly, I came to know her story. This was a fascinating woman who had lived (and continues to live) an extraordinary life. The one thing that resonated most, though, was the love story of her and Vic. While I do believe in “forever love,” I don’t think it happens often, and maybe that’s just a function of people giving up when the going gets though. Elaine and Vic’s relationship, however, is proof that love can stand the test of time and survive all of life’s many ups and downs.

You can read more about Elaine and her background on her website and blog, ElaineMansfield.com, but I’m here to tell you about her newly released book, Leaning Into Love: A Spiritual Journey Through Grief. Pour a cup of hot tea, curl up in your favorite blanket, and grab this book. It will draw you in and hold you until the final page.

The Many Layers of Love

Stone cairn on Elaine’s land where Vic’s ashes are buried.

When I read Elaine’s work, whether a blog post, article, or this book, I find myself fully immersed in her world. The imagery she creates through words is uniquely beautiful; as you read, it’s as though you’re peering through a peep hole, watching intently as things unfold. Her writing has a spiritual depth such that you’ll walk away from any of her work with a changed perspective.

Leaning Into Love begins in early 2006, when Vic develops a persistent case of what appears to be the flu. We journey along with the couple through his cancer diagnosis and the ensuing months. Elaine shares the raw emotion that naturally accompanies a life altering event like this, and one of the things I love is her honesty. There is no sugar coating; the emotions portrayed are as real as it gets.

It’s a touching reminder that even in the most loving relationship, stress takes a toll. People lose patience; they say and do things they regret later. I found it refreshing to read not only about this couple’s unconditional love and boundless support for one another, but also the moments of frustration and rebellion. We’re all human. We’re conditioned to think true love looks like a Hallmark commercial, but alas, it has its share of bumps in the road. Bravo to Elaine for sharing both sides of the story.

His Holiness, the Dalai Lama

Colgate University, 2008

The teachings of the Dalai Lama are woven throughout the book, and we see what a crucial role this great man played in the lives of the Mansfields. One of the most poignant moments in the book comes when Vic, nearing the end of his battle with cancer, meets with the Dalai Lama at a Colgate University event.

Colgate’s president Rebecca Chopp introduces the panel members and welcomes His Holiness. Then she nods to Vic, who walks toward the Dalai Lama holding a silk wrapped copy of his book and bows deeply.

The Dalai Lama steps off the podium, moves close to Vic, and peers intently into his eyes. His voice breaking with tears, Vic thanks His Holiness for the spiritual, political, and intellectual inspiration he has given him, his students, and the world…

Death would come shortly, but for that moment, hearts overflowed with nothing but joy, love, and light. A proud moment Elaine will treasure forever.

Rebirth

In the second half of Leaning Into Love, we accompany Elaine on a new journey as she begins to find herself following Vic’s passing. As time marches on, the author begins to unlock the mystery of who she will be without her soulmate by her side. During this time, she finds that creating rituals helps to sooth her soul and quiet her mind. Slowly she becomes acquainted with her new self.

Despite catastrophe and repeated failures, new life persists and eventually takes flight. Even though the bluebirds lost everything, the female has a new nesting cavity by now and warms a new clutch of eggs. Birds do not understand hopelessness or failure. They keep trying…

Like wrens, my solitary life is plainer and less exciting than my old life, but there is still potential. Like the wrens and bluebirds, I will not give up hope.

Elaine, 2014

Inspiration. Despite it all, there is hope. Life changes; it ebbs and flows. We lose the ones we love and at the same time we grow and morph into new people ourselves. It’s a rebirth of sorts.

Our priorities change; perhaps if we’re lucky, through the tragedy, we find our purpose in life. We miss them more than words can describe, and there are days when all we can think of is what our lives used to be like. Through Leaning Into Love, Elaine shows us that life does go on following great loss, and it can be stunningly beautiful and filled with depth and purpose.

Thank you, Elaine.

__

You can find Leaning Into Love on Amazon (don’t forget to use Amazon Smile!) and visit Elaine’s website to learn about her upcoming events, including a November 8th TedX Talk in Corning, NY. Be sure to bookmark Elaine’s blog, and follow her on Facebook, Twitter, and LinkedIn.

 

 

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WomenAgainstAlzheimer’s Launches Shadow Box Memory Project!

28 Tuesday Oct 2014

Posted by Ann Napoletan in Advocacy and Awareness, Face of Alzheimer's, Inspiration, Life After Caregiving, Mom, November-National ALZ Awareness Month, USAgainstAlzheimer's, Washington

≈ 2 Comments

Tags

alzheimers, alzheimers awareness, dementia, shadow box memory project, usagainstalzheimers, womenagainstalzheimers

Last month, I had the pleasure of attending the WomenAgainstAlzheimer’s Out of the Shadows Summit held in Washington, DC. While there were many memorable moments over those two days, one of the highlights was our evening at the National Museum of Women in the Arts.  That night, the WomenAgainstAlzheimer’s (WA2) Network launched its Shadow Box Memory Project.

Photo Credit: WomenAgainstAlzheimer’s

Prior to the Summit, attendees were invited to create shadow boxes containing pictures and memorabilia honoring loved ones affected by Alzheimer’s disease. Each shadow box was as unique and beautiful as the person that inspired it. Seeing the display was a powerful, moving reminder of why we are determined to keep fighting until we stop Alzheimer’s in its tracks.

Now WomenAgainstAlzheimer’s wants to know what you think about expanding this project, creating a national campaign to raise awareness about the disease – much like the AIDS Quilt did for AIDS. Did you know the quilt boasts an impressive 48,000 panels and a nomination for the Nobel Peace Prize??!

As we prepare to mark the beginning of National Alzheimer’s Awareness Month, please take 2-3 minutes to respond to this brief survey. Your feedback is very valuable to WomenAgainstAlzheimer’s, and your time and opinions are truly appreciated.

Click here to take the survey:  https://www.surveymonkey.com/s/GLLXNHK

Thank you so much and feel free to share this with others who have been touched by Alzheimer’s. Together we can and will make a difference!

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