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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Books

Still Alice: Breaking Through Old Stereotypes

28 Saturday Feb 2015

Posted by Ann Napoletan in Advocacy and Awareness, ALZ Assn - National, Books, Celebrities, Early Onset, Face of Alzheimer's, Films, Helpful Resources, Inspiration

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alzheimers, alzheimers awareness, alzheimers stereotypes, dementia, julianne moore, still alice, younger onset alzheimers

This past week, I had the pleasure of attending a screening of Still Alice followed by a panel discussion organized by our local chapter of the Alzheimer’s Association. I’d seen the film the first day of the wide release, but watching it for the second time was a completely different experience.

The event was sold out, which in and of itself felt like a victory. Just being in that space with so many people united in the dream of a world without Alzheimer’s was overwhelming.

Julianne Moore’s portrayal of Alice is brilliant, no doubt largely due to the careful research she did for the part. Last month, Sandy Oltz, Moore’s personal consultant and inspiration for the film, spoke at the Alzheimer’s Association’s Leadership Summit in Orlando. Sandy was diagnosed with younger onset at age 47. In many ways, she is the real life Alice; educated, accomplished, strong, beautiful, a wife and mother, and living with Alzheimer’s.

 Please do not think I am suffering. I am not suffering. I am struggling, struggling to be a part of things, to stay connected to who I once was. So, ‘live in the moment’ I tell myself. It’s really all I can do, live in the moment.

 

Sandy Oltz

Whether or not to see Still Alice, or when to see the movie and in what setting, is a very personal decision. I had the book on my Kindle for a couple of years before I worked up the courage to read it, and then it was only because I was going to be hearing Lisa Genova speak.

If you have lived the reality of Alzheimer’s disease, this film will be difficult to watch. It will inevitably remind you of moments with your own loved one: moments of anger, frustration, and fear. But it will also bring forth memories of a love the depth of which cannot be described. A love that goes far beyond words into a realm we never knew existed.

Still Alice has the power to change the way the world views Alzheimer’s. This movie represents a breakthrough. Alice is far from the stereotypical Alzheimer’s patient, and the message is simple: Alice Howland could be any of us.

There but for the grace of God go I.

We can only hope that as this powerful film works its way into the mainstream, people are inspired to join the movement to #ENDALZ. Because at the end of the day, it’s really just about love…

 

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Alzheimer’s Caregiving: Thoughts for the New Year

28 Sunday Dec 2014

Posted by Ann Napoletan in Advocacy and Awareness, Books, Caregiver Burnout, Caregivers, Guilt and Regrets, Helpful Resources, Ruminations, Support system, Tips

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alzheimer's books, alzheimers, alzheimers caregivers, alzheimers support, caregiver stress, caregiving, dementia, respite care

As 2014New Year 2015 draws to a close, I’ve been thinking a lot about the pressure caregivers feel to be perfect. I see this on a regular basis through my role as co-moderator of the USAgainstAlzheimer’s online support community. Family members find themselves drowning in guilt because they’ve set unreasonably high expectations for themselves; often these expectations are so lofty that no human being could possibly live up to them.

I think an admirable goal for 2015 is to be more gentle with yourself. Pay attention to your self-talk, and when you realize you’re beating yourself up, make a conscious decision to S-T-O-P. I know it’s easier said than done, but try and have faith in the decisions you make, for there is no doubt you are doing the very best you can.

As don Miguel Ruiz reminds us in The Four Agreements, your “best” will be different from day to day, perhaps from hour to hour. When you are sick with a winter cold or exhausted due to lack of sleep or simply at your wit’s end, your best will be different from when you are feeling 100%. That is a fact, and that, my friend, is okay.

Here are four things I hope you’ll consider in the coming year.

  • Join a support group. Check with your local Alzheimer’s Association chapter or look into an online support community like the USAgainstAlzheimer’s Facebook Community. There is immeasurable comfort in simply knowing you aren’t alone. I resisted seeking support during my mom’s illness, and by doing so, I shouldered more on my own than I needed to.
  • If you care for a loved one at home, seek respite. There is no shame in caring for yourself. In fact, it’s a necessity. Your ability to do what’s best for your loved one depends on your own physical, emotional, and mental wellbeing. The National Respite Locator is a wonderful place to start when searching for assistance.
  • Check out Seasons of Caring: Meditations for Alzheimer’s & Dementia Caregivers. This one-of-a-kind book was recently published by ClergyAgainstAlzheimer’s (CA2). Available for only $3.99 on Kindle and less than $15 in a lovely paperback edition, all proceeds benefit CA2 in their work to support caregivers and stop Alzheimer’s. This interfaith book contains over 140 original meditations by 70 leaders in the faith community, care specialists, and caregivers. I’m proud to be a contributor to a book I believe will provide infinite amounts of hope and encouragement to dementia caregivers around the world.
  • Do something to raise awareness or support other caregivers. Whether you simply share an article on social media or write a blog post, participate in your local Walk to End Alzheimer’s, or offer support to a fellow caregiver online or in person, paying it forward will give you a sense of purpose. The single thing that has helped me most in this journey has been reaching out to others.

I wish each and every person who visits this page a blessed 2015. May you find support, comfort, and peace of mind in the coming year.

With love,
Ann

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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

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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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