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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Life After Caregiving

Mother’s Day Reflections: The Journey Continues

09 Saturday May 2015

Posted by Ann Napoletan in Grieving, Inspiration, Life After Caregiving, Mom, Mother's Day, Ruminations, Saying Goodbye, Smiles

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Tags

alzheimers, alzheimers grief, life after alzheimers, mothers day, mothers legacy, remembering mom

I kept very busy this week – the week before Mother’s Day. There’s no avoiding it – Mother’s Day is everywhere! However, by maintaining a packed schedule and having a few Alzheimer’s projects to focus on, I was able to stay out of my head.

It helps to recognize the problem; for me, too much thinking is never a good thing. Thinking about projects or work or writing is different – I’m referring to “idle thinking.” Like clockwork, without something to keep my mind busy, it wanders off to unpleasant places and takes up residence. It’s a very slippery slope. Continue reading →

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Joyful Moments in Memory Care

25 Saturday Apr 2015

Posted by Ann Napoletan in Advocacy and Awareness, Face of Alzheimer's, Inspiration, Life After Caregiving, Mom, Ruminations, Smiles, Volunteering

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alzheimers, alzheimers moments of joy, alzheimers volunteer, dementia, memory care

Volunteering with Alzheimer’s patients is something I’ve thought about doing since my mom died at the end of 2012, but part of me felt apprehensive about it. Would it hit too close to home? Would my emotions get the best of me? Would it just be too painful? Was it too soon? I don’t think the grief ever really ends; it just changes with time – but it’s ever present.

All valid concerns under the circumstances, but it had been nearly 2 ½ years. Quite frankly, how could I know whether or not I was ready unless I put myself out there? I would either be fine – or I wouldn’t, but all the pondering in the world wasn’t going to answer that question.

The First Step

Last week, I had my orientation and it went well. I left the building feeling good about the community and the staff members I’d met that evening. The 15 minutes spent in the memory care unit bolstered my confidence in the decision to work with dementia patients. So many of those sweet faces reminded me of people I’d met in Mom’s last four years of life – people I had fallen in love with.

Alzheimer’s may have changed the LOVE that you share, but it can’t ever, will never, have the power to ever completely erase it.   -Mara Botonis

Over the ensuing days, I found myself feeling excited, but also a bit uneasy. Just about anything unfamiliar is accompanied by some level of trepidation, and this was no different. Of course, the fact that I came out of the womb worrying probably didn’t help, but what’s life if you don’t step out of your comfort zone every now and then, right?

The Day Arrives

Throughout the day of my first shift, my mind wandered to thoughts of the coming evening and how things would go. Finally, the workday ended, and it was time to head over to the community where I would be volunteering. Rush hour traffic gave me some time to organize my thoughts before I arrived, and I was glad of that.

I signed in and made my way to Memory Care, where I took a deep breath, punched in the security access code, and walked into a brand new experience. An experience, I must say, that was more than I could have hoped for.

The residents were finishing dinner and gradually moving over to the common area. It all felt a bit awkward initially as I didn’t know any names and I was still trying to get a sense of the evening routine. With each passing moment, I found myself feeling more and more at ease and it wasn’t long before I knew for certain I was just exactly where I was meant to be.

Memories of Mom

Moments of joy with Mom at Eason House

Over the course of the evening, I spent time with two women in particular who reminded me very much of mom at various stages of her illness. The moments where similarities came forth made my heart leap inside my chest – flashbacks to treasured moments of joy.

One of the ladies, mostly non-verbal, surprised me several times by perking up and responding to my words. When I complimented her on the bright red blouse she was wearing and told her that red was one of my favorite colors, her eyes met mine and she quietly, but very clearly said, “Me too.” For a moment, her expressionless eyes sparkled.

Creating Moments of Joy – for Them and for Us.

There was no mistaking “Mary’s” contentment as she reached out and took my hand in hers, squeezing tightly. Yet from across the room, her vacant exterior had me fooled into thinking she would be completely unresponsive. It took less than a minute for me to see how wrong I had been.

Later, as she began to smile and laugh, I asked if she was happy. Again looking right into my eyes, she sweetly said, “Very happy.” I can’t even describe how I felt at that moment. There was something about her laugh and the expression in her eyes that reminded me of mom in the late stages.

All of us who love someone with Alzheimer’s know that feeling. A visit that includes a smile, a couple of words clearly spoken, or a few moments of clarity is better than a winning lottery ticket. We wait for those experiences, and when they come, it’s pure magic.

The Gift of Time

I’m told that of 40+ Memory Care residents in this community, only about five have regular visitors. I think that’s astounding, and it’s probably indicative of what’s happening in Alzheimer’s units around the nation.

If you’ve ever thought about volunteering, I urge you to take the next step. The all too common misconception is that dementia patients are merely a shell of a person. People mistakenly think, “They won’t remember my visit, so why bother? “ Nothing could be further from the truth.

While it’s true that they may not remember the details of a visit, I feel confident that the resulting feelings last long after we’ve gone home. Ten or fifteen minutes of loving,  listening, and kind attention can make all the difference in the world to someone who spends so much time alone.

These are beautiful, living, breathing human beings with emotions, spirit, and so much left to give. They deserve to have the best quality of life possible and we hold the keys – all we have to do is meet them in their world rather than expecting them to be fully present in ours. At the end of the day, they give us so much more than we could possibly give them.

I was emotional as I walked out of the building after my first volunteer shift. Indeed it brought back all kinds of memories – good and bad – but my heart was overflowing with love and purpose. I knew that in those couple of hours, I’d made a difference in a few lives. and they had certainly made a difference in mine. Nothing beats that.

To find a volunteer opportunity, reach out to a care community in your area. The need is great, and your query will most likely be met with sincere gratitude. I’d love to hear about your volunteer experiences! Please leave a comment below sharing your story! 

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Alzheimer’s: When Will the Government Put Their Money Where Their Mouth Is?

03 Tuesday Feb 2015

Posted by Ann Napoletan in Advocacy and Awareness, ALZ Assn - National, Face of Alzheimer's, Facts & Figures, Helpful Resources, Life After Caregiving, NAPA, Research, Ruminations, USAgainstAlzheimer's, Washington

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Tags

alzheimers, Alzheimers advocacy, alzheimers funding, alzheimers research, dementia

 


In recent days, staunch supporters including Senators Susan Collins (ME), Edward Markey (MA), Amy Klobuchar (MN), and Jerry Moran (KS) have encouraged President Obama to include an increase for Alzheimer’s research in his FY 2016 budget. After all, what’s a “plan” to end Alzheimer’s by 2025 without the funding necessary to do so?

And the Verdict is in

Disappointment ensued as the Obama Administration released the proposed budget yesterday, and Alzheimer’s was overlooked. In a press release, George Vradenburg, co-founder of USAgainstAlzheimer’s said, “If we as a nation do not make Alzheimer’s research a top priority, we simply cannot meet our national goal of preventing and treating Alzheimer’s by 2025.”

What will it take to convince our government that unless we do something to stop it, Alzheimer’s will be the public health crisis of our lifetime? Perhaps the powers-that-be need to listen carefully to Michael Auslin’s story, or that of Karen Garner, whose husband was diagnosed before his 50th birthday. What about Rebecca Emily Darling, who was just 26-years-old when her mother was diagnosed?

Proof in the Numbers

  • Alzheimer’s is the only cause of death among the top 10 in America that cannot be prevented, cured, or even slowed. More than 500,000 people die annually from Alzheimer’s.
  • Deaths from Alzheimer’s increased 68 percent between 2000 and 2010, while deaths from other major diseases decreased.
  • More than 5 million Americans are living with some form of dementia. If we remain on the current trajectory, that number will rise to 16 million by 2050.
  • Every 67 seconds, someone in the U.S. develops Alzheimer’s. By 2050, it will be every 33 seconds.
  • In 2014, the direct costs to American society of caring for those with Alzheimer’s totaled over $200 billion, including $150 billion in costs to Medicare and Medicaid.
  • Unless something is done to stop it, Alzheimer’s will cost an estimated $1.2 trillion (in today’s dollars) in 2050. Costs to Medicare and Medicaid will increase nearly 500 percent.

For more information, check out the Alzheimer’s Association’s 2014 Facts and Figures report.

Take Action

Consider this: Alzheimer’s research spending currently stands at less than 1% of the cost of care.

Please write or call your Senate and Congressional representatives. Ask them to support the fight to #ENDALZ.

If not now, when?

It’s been said there are two kinds of people: those who have been personally touched by Alzheimer’s and those who will be.

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The Long and Winding Road

Marilyn, BA (before Alzheimer's)

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