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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Ruminations

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

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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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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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Tags

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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