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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Tag Archives: grieving

Four Years: Remembering 12.15.12

15 Thursday Dec 2016

Posted by Ann Napoletan in Advocacy and Awareness, Caregivers, Grieving, Hospice, Kobacker House, Life After Caregiving, Mom, Ruminations, Saying Goodbye

≈ 4 Comments

Tags

alzheimers, alzheimers caregiving, alzheimers grief, dementia, grieving, missing mom

I try to take December 15th off every year; I want to be able to sit with my thoughts and emotions without the rest of the world interrupting.

Four years ago on this date, my mom was freed from Alzheimer’s disease; it was December 15, 2012, that she earned her angel wings after a long, exhausting battle against a disease that always wins.

Memories of that day remain vivid. We were at Kobacker House, a beautiful inpatient hospice facility that cared for us with such compassion when we needed it the most. We knew the end was very near. Never have I been so overwhelmed with competing thoughts:

“God, please, not yet. I’m not ready to say goodbye. Please bring us a miracle.”

“God, please take her. She’s ready. She has fought hard and she’s so tired. I know that it’s time. Let her be at peace.”

“God, no. Please, one more day with her.”

“Please, God… take her home. Let her be whole again, free of pain. It’s time.”

By that Saturday, there was nothing left of her earthly shell. Those nine days were the most agonizing of my life.

That morning, I sat next to her bed holding her hand, stroking her head, and telling her how much I loved her. I whispered that it was okay for her to go, we would be fine, and I told her she had been the best mother a daughter could ask for. Her eyes were closed. There’s no way of telling what she could hear or understand. The day before, I felt her squeeze my hand every so lightly when I told her I loved her. I still don’t know if that was real or imagined; I’d like to think it was real.

As the morning wore on, a feeling washed over me – she would be going soon. I called our dear friend, Emily, and left a voice mail asking if she would come and be with us. Emily had worked for my mom many years prior and remained a constant in our lives, visiting Mom weekly long after everyone else had stopped. She is also a woman of deep faith. Jess and I agreed her presence would be comforting for all three of us.

Not long after leaving that message, shortly after noon and still at Mom’s bedside, that feeling enveloped me again – stronger this time. I called across the room to Jess, telling her she should come over. Seconds after she arrived at my side, Mom took her last breath. Her soul was lifted from her physical body right before our eyes in a moment that will remain etched in my mind forever. I’ve never experienced such a spiritual moment.

I had been holding the reins for all those years, and once it was over, I crumbled. The rest of Saturday and the ensuing days were a blur. Carrying all of our belongings to the car, arriving at home and feeling entirely spent. Lost. The grief was so powerful that my body was racked with physical pain.

One would think that after such a long debilitating illness, where we lost a bit of her with every passing day, I would have been prepared. Hadn’t I been grieving for years and years? I really thought when this time came I would feel a sense of relief.

Instead, I was hit hard with the realization that I would never again see her smile, feel her touch, or hear her voice. In my experience, this grief was entirely different than the anticipatory grief I’d been feeling for as long as I could remember. The finality of this was excruciating. I cried for days.

Four years later, the piercing, raw pain of those early days has faded, but in many ways, I miss her more as time passes. There are a million things I wish I could sit down and talk to her about – a decade-plus of things I need to catch her up on – and every year, that list gets longer.

In October, she would have turned 80. I think back on how vibrant she was before AD came into our lives. I always envisioned her as a “young” 80-year-old with a calendar full of travel plans and social activities. I could have never imagined how things would unravel at the seams. The lesson is – we simply don’t know what life has in store for us.

I think our long journey made me a better person in many ways – more compassionate and empathetic, and certainly more committed to serving others for the greater good. Life means more now; I want to be a part of something bigger than myself and I’m determined to leave some sort of legacy behind.

Christmas at Eason House, 2010

As an introvert and empath, it has always been hard for me to exist right at the surface – my thoughts tend to live much deeper in my soul. Following our Alzheimer’s experience, I have less need for idle chitchat and much less tolerance for things that don’t really matter. I suppose I’m more introspective than ever. I’ve never been terribly driven by money and it’s even less important now. I really just yearn for a slower pace and a less stressful lifestyle.

Today, as I reflect on life, love, and loss, I just hope Mom knows how much I love her and that she’s proud of the work I do to honor her legacy. I would love to be able to tell her just how much her story has touched the hearts of others. Her memory lives on and she continues to inspire not just me, but so many others.

 

 

 

 

 

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When Alzheimer’s Steals Christmas

12 Friday Dec 2014

Posted by Ann Napoletan in Grieving, Guilt and Regrets, Holidays, Kobacker House, Life After Caregiving, Mom, Quotes, Ruminations, Saying Goodbye

≈ 13 Comments

Tags

alzheimers, dementia, grief, grieving, holiday grief

Let your tears come. Let them water your soul.
– Eileen Mayhew

“The week” is here.

Two years ago at this time, I was sitting at Mom’s bedside focused on every subtle change in her breathing. The end was days, if not hours, away.

Final Days: The Vigil

Watching a loved one die is a surreal experience. Somewhere in the far reaches of your mind, you have this misguided, nonsensical notion that she’s going to get better. But your logical self knows that isn’t the case. You know that ultimately, you will be packing up her things and leaving this place without her. Just the thought of it leaves you with a knot the size of Texas in your stomach.

One minute, you are quietly talking to God asking Him to take her, praying that her suffering will finally come to an end. And then you find yourself begging Him for just one more day with her.

That last day comes; something is different. You know the end is near. You watch as she takes her final breath, and it’s as though you can feel her soul being lifted toward the Heavens. It’s a moment etched in your memory forever. You’ll replay that last breath in your mind a million times. Even two years later, it feels like just yesterday.

Did she know I was right there with her until the end? Did she know how much I loved her and how sorry I was for those early years when I didn’t handle things as well as I could or should have?

Did she just squeeze my hand? Did she blink? No, that must have been my imagination. Or was it?

All I Want for Christmas Is… My Old Memories

This year, for the first time ever, I decided not to put up the tree. I feel overwhelmed and quite honestly, I’m really looking forward the holidays being over. I know there will be moments of joy, especially with the little ones, but the holidays will never be what they once were.

Christmas at Eason House, 2010

Christmas at Eason House, 2010

I’m angry that we were robbed of so many years. And, I’m sad that I can’t actually remember the last GOOD Christmas we had at Mom’s.

Even now my most vivid memory of Christmas Eve dinner was the last year she cooked and hosted. We were so mired in denial that we tried to go on as if things were fine. But they weren’t fine at all.

Mom was frazzled; preparing the meal was no longer enjoyable for her. It was a strain. She couldn’t get the timing quite right. There wasn’t enough food for everyone. When we sat down for the annual game of penny rummy, she said she didn’t feel like playing. The reality was, she didn’t remember how to play. She had done all these things a million times, but it was clear now that Alzheimer’s was winning. It was the end of an era. And dammit, that’s what I remember about Christmas at Mom’s.

New Traditions

Circa 1988. Mom at age 52.

Last year, realizing how difficult December 15th would be, we decided to do something fun that Mom would have enjoyed. We would make the best of the day and honor her memory. Baking Christmas cookies made the most sense.

Oh how she loved to bake, and her cookie trays always looked just perfect. Thus began a new tradition, “Gram’s Cookie Day.” So, this weekend instead of drowning in tears over what’s been lost, we’ll bake some old favorites. I’ve no doubt she’ll be watching over us to be sure everything is up to her standards. (((smile)))

Yesterday, Today, and Tomorrow

My mom adored Christmas. She loved the decorations and traditions, loved being in the kitchen baking and cooking, and loved being surrounded by family. She was generous beyond words and it gave her such joy to watch as everyone opened the gifts she had carefully chosen.

I want to love the holidays as much as I used to; as much as Mom did. But, I fear those days may be gone forever. Now it seems the arrival of Thanksgiving is little more than a reminder of 2012.

December 15th will always arrive with a vengeance ten days before Christmas. There’s simply no way around it.

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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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Marilyn, BA (before Alzheimer's)

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