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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Tips

Join the 30-Day Brain Health Challenge

01 Monday Apr 2019

Posted by Ann Napoletan in Be Brain Powerful, Brain Health, Marilyn's Legacy, Prevention, Tips, USAgainstAlzheimer's

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#braingoals, alzheimers, Be Brain Powerful, Brain Health, brain health challenge, dementia, womens brain health

social_media_twitterAs someone who has been up close and personal with Alzheimer’s disease, I think about the future a lot. If you are caring for or have lost a loved one to AD or another form of dementia, you more than likely know exactly what I’m talking about. What are our odds of being diagnosed at some point in our lives and if that day should come, will there be a treatment or means to slow the progression? As companies like Biogen and Lilly pull the plug on Phase III studies of drugs that once seemed to hold such promise, one has to wonder.

Brain Health

Today we are seeing much greater emphasis on prevention. How can we keep our brains healthy and stave off the disease for as long as possible? Enter the Brain Health Partnership.  Led by UsAgainstAlzheimer’s, the BHP is “a comprehensive strategy to ensure brain health is included as an integral element of overall good health, and cognitive decline is identified and addressed in a timely manner.”

We think of heart health as a critical part of overall health; why isn’t the same true of brain health?

Last year, my PCP laughed at me when I asked to have a baseline SAGE test placed in my medical records.  (Note: This was the same PCP that diagnosed my mother’s dementia, so she is fully aware of the family history.)  At the time, I was stunned and quite frankly appalled.  Thankfully, the Brain Health Partnership aims to ensure the medical community takes us just as seriously when we express concerns about cognitive health as they do when we raise concerns about any other aspect of our health.

Women and Alzheimer’s

When it comes to Alzheimer’s disease, women are disproportionately effected. Did you know that two-thirds of Americans living with Alzheimer’s are women and one in six women age 65 and older will develop AD? These numbers are staggering! Alzheimer’s is a women’s health issue – a women’s health crisis – and Be Brain Powerful was created to address it. Marilyn’s Legacy is proud to be an advocacy partner in this important campaign that shines a light on women’s brain health.  The mission is simple:  To be brain powerful at any age. 

Join the Challenge

We invite you to join the 30-Day Brain Health Challenge kicking off on 04.02.19. It’s free and easy; think of it as the first step toward taking control of your own brain health! Each day, you’ll receive a tip or challenge that can easily be incorporated into your daily routine.  You can sign up at any time during the thirty days, so please join us and invite your friends to participate as well! Click here to register.

 

 

 

 

 

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Alzheimer’s, Thanksgiving, and Expectations

21 Wednesday Nov 2018

Posted by Ann Napoletan in Caregivers, Expectations, Holidays, Mom, Ruminations, Tips

≈ 1 Comment

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alzheimers, alzheimers holiday tips, caregiving, caregiving at the holidays, dementia, holiday stress, holidays with alzheimers, thanksgiving, thanksgiving with alzheimers

There’s one Thanksgiving that is forever etched in my mind for all the wrong reasons. Although it occurred eight years ago, in many ways, it feels like yesterday. When I think of the November holiday that I once looked so forward to, the first image that comes to mind is from 2010.

As I thought about writing this post and what tips I might offer to help you make the most of your holiday, I found myself overwhelmed. It took several days of contemplation for me to come to the realization that it really all boils down to one simple – yet extremely difficult – concept.

Expectations.

Weeks before that fateful Thanksgiving in 2010, I had unwittingly crafted an idyllic vision of how it would go. This wasn’t deliberate, but my subconscious went to work on how the day would unfold, what the preparation would look like, how the meal would come together, and most importantly, how my mom would be that day – her mood, frame of mind, level of agitation, ability and desire to participate, and all the other things that go along with Alzheimer’s.

Of course, at some point, my subconscious went off the rails – thus the dreaded idyllic vision. I’m sure memories of beautiful holidays complete with cherished traditions, found their way into the mix. Without even realizing it, I had set myself up for disappointment, profound sadness, anger, grief, and a dozen other emotions. Naturally, there was no way this Thanksgiving could be compared to or measured against those blissful memories.

In this particular case, our reality bore no resemblance to idyllic. Mom was having a bad day.  A very bad day.

That evening, I, along with Mom’s two caregivers and my daughter sat down to Thanksgiving dinner. By then, the food was cold, and my stomach was in a million knots. My dear mother was pacing and screaming as she had been all day. She was utterly inconsolable. Severe aphasia had long ago robbed her of the ability to communicate verbally, leaving her unable to express what was bothering her – or anything else, for that matter.

To Mom, that Thursday was just another day. It wasn’t her fault; it wasn’t anyone’s fault. It was this damn disease, all part of the unexpected hand we’d been dealt. Simply put, the picture-perfect holiday I had envisioned dissolved into a pool of tears and when it was over, I swore off all future Thanksgivings.

I could close by listing my top 10 tips for a successful holiday celebration, but instead, I’ll gently remind you to be careful of your expectations. Keep them reasonable. Check yourself along the way and make sure your subconscious isn’t taking over and creating an expectation that the day can’t possibly meet.

Rather than working to create a holiday just like those of years gone by, focus on the current reality. Remember that too many people, a lot of noise and commotion, and sudden changes to routines can really throw your loved one for a loop. Plan accordingly. Spending quality time together and making cherished memories – when it’s all said and done, those things are much more important than setting an impeccable table or serving a perfectly plump juicy bird at 4pm sharp. Flexibility is your friend and goes hand in hand with maintaining reasonable expectations.

It sounds cliché, but the past is in the past, and today is all we have. Try to go with the flow, relax, and create moments of joy wherever you can. Treasure the simple things – an unexpected smile, warm hug, or the expression on his face when he tastes a favorite dish that just might trigger a moment of clarity.

Here’s wishing you a blessed Thanksgiving with the people who mean the most to you. And, don’t forget to be gentle with yourself…

 

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Alzheimer’s and Dementia Gift Ideas

19 Monday Dec 2016

Posted by Ann Napoletan in Blogging, Caregivers, Helpful Resources, Holidays, Products, Tips, USAgainstAlzheimer's

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alzheimers, alzheimers and the holidays, alzheimers gifts, dementia, dementia gifts

Finding the right gift for a loved one living with dementia can be challenging, so I put together a list of ideas to help. Click on over to the UsAgainstAlzheimer’s blog to find it — >  Gift Ideas

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The Long and Winding Road

Between 2009 and 2015, Marilyn’s Mighty Memory Makers have raised over $22,000 in the fight to #ENDALZ! To all who have supported us, THANK YOU!!

Marilyn, BA (before Alzheimer's)

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