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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Caregivers

Meet Victoria

09 Tuesday Aug 2016

Posted by Ann Napoletan in Advocacy and Awareness, Caregivers, Expectations, Face of Alzheimer's, Video

≈ 6 Comments

Tags

alzheimers, caregiving, dementia, younger onset alzheimers

This video is not only a lovely tribute from a daughter to her father, but it carries an important message. No matter how far along someone is in the disease, they deserve our attention, love, and respect.

Too many people still have this false notion that once a loved one no longer recognizes them, there’s no reason to visit. It pains me that this line of thinking still exists. Even in the latest stages, there are moments of clarity, and we just don’t know when they’ll come, but regardless, every person on the planet needs love, affection, and human interaction. Whether they remember you or not, they need you. Please don’t forget this.

Victoria’s father was diagnosed with young onset Alzheimer’s when she was just 19-years-old. Here is her story.

 

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Book Review: Elegy for Mom

28 Thursday Jul 2016

Posted by Ann Napoletan in Advocacy and Awareness, Books, Caregivers, Helpful Resources, Inspiration, Tips

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Tags

alzheimer's books, alzheimers, alzheimers caregivers, caregiving, dementia

Elegy-for-Mom_BookCvrI’m often asked to review books on the topic of Alzheimer’s/dementia caregiving. I’d love to have time to get to all of them, but with limited bandwidth, I’m forced to pick and choose. Today, I’m happy to share Elegy for Mom: A Memoir of Family Caregiving, Alzheimer’s, and Devotion, by Vicki M. Kaufmann. At just over 100 pages, it’s a quick, easy read, yet covers a lot of ground!

In writing Elegy for Mom, Kaufmann’s goal was to share useful ideas and resources based on her own experience caring for her mother. To the degree possible, she wanted not only to offer support, but also to help bring meaning to the journey and reveal some of the blessings that can be found along the way.

Although the author has a background as a counselor, the book is really a very personal look at caring for a loved one with Alzheimer’s. In fact, Kaufmann states early on that despite her clinical experience, she was unprepared for the job of caregiver.

She describes feeling emotions so many of us can relate to: first comes denial, followed by anger and depression, and finally, resignation. Kaufmann believes caring for a family member is a spiritual calling and often a “pathway to new levels of grace, courage, creativity, and love.” This resonates with me; through my own journey with my mother, I found courage I didn’t know I had, became a more compassionate human being, and felt a depth of love I didn’t know existed. Ultimately, like the author, I found purpose in sharing our story to help other families.

While no one would choose this journey, I truly appreciate those who can find something positive in the experience. Long-time caregiver and leading advocate Meryl Comer refers to this as “flipping the pain,” which is so fitting. We can wallow in grief and sorrow, or we can find something to be grateful for and even use our experience to ease the pain of others and affect change. Choosing the latter doesn’t mean there will never be sorrowful times when tears flow like a river; it just means that at the deepest level, we choose gratitude over bitterness.

vicki-imgElegy for Mom is filled with moving original poetry, snippets from Kaufmann’s personal journals, family photographs, and samples of her mother’s original artwork. Each chapter tackles a unique sub-topic, ultimately painting a picture of what could be any family making their way through life with Alzheimer’s – one day at a time.

Throughout the book, the author also includes tips for caregivers, grouped by topic: making the most of visits, dealing with the stress of caregiving, finding the best facility, and even simple affirmation exercises to fuel the spirit of the weary caregiver.

I found Elegy for Mom to be a lovely blend of storytelling, practical tips, helpful resources, touching poetry, and wonderful artwork. It’s a unique compilation based on one family’s experience – both a loving tribute to the author’s mother, Sophia, and a thoughtful, reflective gift to other caregivers. Kaufmann succeeded in crafting a gem that would make a great addition to any collection.

* Update (08.14.16) – Elegy for Mom has received a gold medal in the “Health and Fitness” category and a silver medal in the “How To/Self-Help” category in the Florida Authors and Publishers Association annual contest. Congratulations to Vicki Kaufmann on this well deserved recognition!!

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Alzheimer’s & Gratitude: A Matter of Perspective

15 Wednesday Jun 2016

Posted by Ann Napoletan in Advocacy and Awareness, alzheimer's & brain awareness month, Blogging, Caregivers, Expectations, Grieving, Helpful Resources, Inspiration, Life After Caregiving, Marilyn's Legacy, Mom, Ruminations, Smiles

≈ 5 Comments

Tags

alzheimer's & brain awareness month, alzheimers, alzheimers gratitude, caregiver grief, caregivers, dementia, gratitude

gllogoJune is Alzheimer’s & Brain Awareness Month in the United States, and I’m grateful to my new friends at the worldwide Network for Grateful Living for helping shine the spotlight on Alzheimer’s!

After being introduced to their site, I was inspired to write a piece about Alzheimer’s and gratitude, two things we don’t necessarily see as going hand in hand. We know this disease brings with it pain and sorrow, shattered dreams, and disappointments over lost opportunities. We mourn uniquely beautiful lives cut short, and we struggle to say goodbye to what could (and should) have been. It’s a journey none of us would choose.

However, like anything in life, perspective matters. Some days, I could easily curl up in a blanket and sob for hours about how unfair it is that I began to lose pieces of my mom before I was out of my 30’s. Even as I write these words, I feel tears well up in my eyes.

Yet Alzheimer’s also made me a more compassionate person. It opened my eyes in many ways – to life’s most simple pleasures, to the fact that my story might actually help others, and to the idea that I had talents and abilities that had gone untapped and might be valued in venues I had never considered.

sunset-over-mountainsLiving through the experience reminded me that my time on earth is limited and there’s no time like the present. It made me sweat the small stuff a bit less. It even made me realize I could leave behind a very comfortable 27-year career with a Fortune 100 company to work for a much smaller non-profit with a strong mission and values I believed in.

Of course, I would trade every last one of those things to have my mom back. Of course I would. But having her back in this life isn’t an option, so I the best way I can honor her is to go on and live the best life I can. The best way I can keep her spirit alive is to do what I now feel is my life’s work, which includes the recent launch of a registered 501(c)(3) non-profit organization, Marilyn’s Legacy: A World Without Alzheimer’s.

I wish I’d grasped the idea of Alzheimer’s and gratitude much earlier in our journey, but I guess that’s what growth is all about. Fortunately, with time, experience, plenty of soul searching – and an ocean of tears – it came while she was still alive. The piece I wrote for Gratefulness.org is all about what a blessing that was. I hope you’ll take  few minutes to visit the site to read and share Alzheimer’s Taught Me to be Grateful.
bd
Bookmark the site and check them out on Facebook as well. Be sure to read about Brother David and the fascinating life he led before co-founding the Network for Grateful Living. This has become one of my favorite places for daily inspiration!

 

 

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Marilyn, BA (before Alzheimer's)

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