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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Mom

What if…

21 Wednesday Jan 2015

Posted by Ann Napoletan in Caregivers, Grieving, Life After Caregiving, Mom, Ruminations

≈ 2 Comments

Tags

alzheimers, dementia

I try very hard not to let myself go there… to the land of “what ifs.”

Just like the proverbial “coulda, woulda, shoulda,” that line of thinking is terribly counterproductive. Life is what it is; it unfolds the way it’s meant to unfold even if it doesn’t align with our expectations.

I try not to go there, because nothing positive can come of it.

However, sometimes when I’m not watching, “what if” reaches out from the dark of the night and grabs me with its razor-sharp claws. This selfish, cruel character has no regard for my well-being. Try as I might, I can’t escape the monster’s clutches.

I melt into it…

What if after having “one of those days,” I could stop at Mom’s house? What if we could sit and talk for a bit? She would share some pearls of wisdom, a plate of leftovers, and a healthy dose of humor. She’d top it off with a giant mom-hug and all would be right with the world again.

Oh the things we take for granted.

What if?

What if?

What if?

What if Alzheimer’s hadn’t taken her so early?

What if life was fair?

What if bad things didn’t happen to good people?

And then just as abruptly as it appeared, “what if” fades back into the shadows leaving me with an aching heart and a tear-stained face.

For now, I’m me again, keeping the “what ifs” at bay… until next time.

 

 

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Alzheimer’s: Heartbreak, Helplessness, and a Lesson in Balance

11 Sunday Jan 2015

Posted by Ann Napoletan in Caregivers, Early Onset, Face of Alzheimer's, Life After Caregiving, Mom, Ruminations

≈ 3 Comments

Tags

alzheimers, dementia, early onset alzheimers, younger onset alzheimers

I do a great deal of reading about Alzheimer’s and other forms of dementia. Personal stories, books, blogs, the latest news from the world of research, and of course, what our friends in Washington are up to.

Every now and then, I stumble upon something that touches me more deeply than usual. This recently published Huffington Post piece by Rebecca Emily Darling fell into that category – and then some.

Beyond Her Years

The writer captures the experience of slowly losing one’s mother to this dreaded disease with an eloquence and wisdom far beyond her years. I was in my early 40’s when my mom was diagnosed, though she began showing signs much earlier. I feel as though I was robbed of so many years of making memories: traveling, holiday traditions, laughter, an impromptu dinner or shopping date, or simply being able to sit and have a conversation. We forget how much of a gift that is – nothing more than a conversation with someone so trusted and loved.

Rebecca Emily Darling, Source: Huffington Post

Rebecca was just 26-years-old when her mother was diagnosed. I can’t fathom it. My own daughter is a few months shy of 30, and I can’t imagine her having to carry such a heavy load at that age. Unfortunately, it’s becoming increasingly common.

The latest numbers I’ve seen indicate there are as many as 400,000 Americans suffering from younger onset dementia and even that is likely to be grossly understated for many reasons, not the least of which are fear and shame. That, however, is a topic for another post.

Below, I’m sharing several passages that I found particularly poignant and eerily familiar. This is an essay you don’t want to miss. You can read the full piece by Rebecca Emily Darling by clicking here.

Helplessness

“One night, my mother fell down the stairs and I ran to her. I held her like a mother holds a child and asked again and again if she was okay. I clutched her to me and rocked her. I felt completely responsible for her and more protective of her than I have ever felt of anyone; just the very idea of her being in pain cut through me. I would do anything to make it better. I would do anything to make my mother better. I would even give her up as my mother if it meant she would be living her life as herself, even if it was without me, even if it was somewhere where I could not see her. I would do anything.”

Heartbreak in Slow Motion

“I am accustomed now to having a mother with Alzheimer’s. I am accustomed to not having a mother on whom I can depend, in whom I may confide, with whom I may simply converse. And when I think of how accustomed I am, my heart breaks all over again. It is a constant ebb and flow, a constant healing and breaking again like the ocean.”

Moments of Joy

“If I have learned one thing from my mother’s disease, it is that the heart has no limit to what it can feel. There is always a deeper love, and always a truer pain. And when I see my mother’s eyes light up at the sight of a simple flower or a chocolate chip cookie, I know that there is always a purer joy as well.” 

Striking a Balance

In 2014, I took a new job that brought me much closer to what I believe is my life purpose; however, it also reduced my earning power substantially. Do I have any regrets? Not one.

Where am I going with this, you might ask. Well, this year, I’ll celebrate my 50th birthday, and my daughter her 30th. We’ll spend two weeks in Italy to mark these milestones. We’ve planned this for at least five years, maybe more.

Mom, Retirement Dinner 1998

Should I spend the money for this trip right now? Probably not. But I’m going to do it because I don’t know what the future holds. My mom retired before she turned 62, having worked hard, saved well, and done everything according to the book. She dreamed of two trips; one was Alaska, the other was Italy. Because of Alzheimer’s, she didn’t take either.

Life is short, my friends. Plan ahead, of course, but strike a balance. Live as though tomorrow isn’t promised, because the fact is, today is the only sure thing.

Thank you, Rebecca, for sharing this beautiful essay that touched me more deeply than you know.

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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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Marilyn, BA (before Alzheimer's)

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