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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Caregivers

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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Banner Alzheimer’s Institute: 2015 Dementia Dialogues Webinar Series

18 Sunday Jan 2015

Posted by Ann Napoletan in Caregivers, Coursework & Learning Opportunities, Events, Helpful Resources, Tips

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alzheimers, alzheimers education, banner alzheimers institute, caregiving, dementia, dementia webinar

Here are some amazing 2015 online education opportunities, straight from The Banner Institute.

Scheduled each third Wednesday, Dementia Dialogues offers a different, pertinent webinar topic each month. For those who are not comfortable with the Internet or who don’t have access, an exclusively audio version is offered as well.

The January webinar will take place this coming Wednesday, Jan 21. Click here to learn more and register!

January 21 – Everything You Always Wanted to Know about Dementia but were Afraid to Ask:  There is a lot of conflicting information, misinformation and unanswered questions surrounding Alzheimer’s and dementia. Join us to gain some clarity with dementia as our experts discuss some questions commonly posed to them. Come prepared to ask your unanswered questions.

February 18 –  Lack of Insight into Dementia:  “My person is in denial about their illness” is a phrase heard all too often in the dementia world. However, some people with this disease are simply unable to see changes within themselves – they have lack of insight. During this Dialogue, you will learn the difference between denial and lack of insight, and will receive strategies to avoid confrontation with a person who cannot accept cognitive losses.

March 18 – Planning for Care across the Stages of Dementia:  Dementia is a disease that requires planning – constantly. Each stage brings unique challenges and needs and by being pro-active rather than reactive, caregivers can help lighten their load and have the confidence they are making decisions as their person would wish. Learn about specific plans that should be made during the various stages of dementia.

April 15 – Alzheimer’s Medications:  Observing benefit of the approved medications for the treatment Alzheimer’s disease can be difficult to see as they don’t modify the course of the disease but can assist in managing symptoms.  Join this Dialogue to learn about medications, reasonable expectations for use, potential side effects and tips for common issues.

May 20 – Planning Successful Travel:  Travel is a joy that many people share throughout their lives. When someone develops dementia, many strategies for daily life can be disrupted by leaving home. While it may require extra thought, travel can still be enjoyable for someone with dementia. Just in time for summer travel, learn tactics to make your trips as successful as possible.

June 17 – Men as Caregivers:  Many men are finding themselves caring for their wife or mother with dementia. It turns out that some stereotypical male qualities can come in quite handy for caregivers of someone with dementia. Join this frank discussion to learn strategies from some successful male caregivers.

And coming during the second half of 2015: 

July 15 – Understanding Psychosis

August 19 – Maintaining Realistic Expectations as Dementia Progresses

September 16 – Best Lessons from Powerful Tools for Caregiving

October 21 – How and When to Execute Powers of Attorney

November 18 – Preparing for the Holidays

December 16 – The Gift of Presence

 

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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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Marilyn, BA (before Alzheimer's)

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