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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Tag Archives: caregiving

National Caregivers’ Day: February 21, 2025

21 Friday Feb 2025

Posted by Ann Napoletan in Caregivers, Facts & Figures, Family, Support system

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alzheimers, alzheimers caregivers, caregiver support, caregiving, dementia, dementia caregivers, family caregivers, national caregivers day, unpaid caregivers

Did you know…

  • In 2023, over 11 million Americans provided unpaid care for people with Alzheimer’s or other dementias; that care was valued at $350 billion.
  • About 30% of dementia caregivers are age 65 or older, and 66% of caregivers live with the person they care for.
  • Approximately 10% of caregivers provide care to a spouse, while over half care for a parent or in-law. About one quarter of dementia caregivers are in the “sandwich generation,” meaning they are caring for an aging parent as well as at least one child.
  • Compared with caregivers of people without dementia, caregivers of those with dementia indicate more substantial emotional, financial, mental health, and physical challenges.
  • 41% of dementia caregivers have a household income of $50k or less.
  • Many dementia caregivers are at significant risk of social isolation as a result of their shrinking social networks.

Source: Alzheimer’s Association Facts & Figures 2024

Thank a caregiver every time you have the opportunity!

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Alzheimer’s, Thanksgiving, and Expectations

21 Wednesday Nov 2018

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

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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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Marilyn’s Legacy 2018 Annual Campaign

15 Monday Oct 2018

Posted by Ann Napoletan in Call to Action, Fundraising, Marilyn's Legacy, Mom, Uncategorized

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Tags

alzheimers, alzheimers call to action, caregiving, dementia, Marilyn's Legacy, research funding

Greetings readers, friends, and Marilyn’s Legacy supporters!

Autumn is upon us, and this was always Mom’s favorite season; it’s hard to imagine that she would have turned 82 this past Friday and that December 15th will mark six years since she left us. I miss her so much. As Jess and I are just returning from a lovely trip, I am reminded of the many experiences Mom missed out on due to this horrendous illness – Alzheimer’s disease.

As many of you know, Marilyn’s Legacy was borne of a desire to honor her memory and give purpose to our journey – an unexpected experience that defies all logic. Our mission is to increase Alzheimer’s awareness among the masses as well as raise funds to stop this insidious disease and provide support to enhance quality of life for families currently on this journey.

ORIGINAL_12959358_10207650539373514_272841886_oThis month, we embark on our 3rd annual giving campaign. I’m proud to say that because of your generous support, we’ve raised over $10,000 since our inception in 2016. Those funds have been directed to organizations that are leaders in this space. They are driving bold innovative research, advancing national care policies to support caregivers, and working to increase speed, efficiency, and diversity around clinical trials. There is too much good work being done to even begin to touch on all of it, but progress is being made each and every day. We are more hopeful than ever.

Fiscal responsibility is of utmost importance to us at Marilyn’s Legacy, so we can assure you that the organizations who receive funding from us display superior financial stewardship. We know you want your contributions to go straight to the important work taking place, not to paying salaries and overhead. Two of our most important partners, UsAgainstAlzheimer’s and the Cure Alzheimer’s Fund, deploy every dollar of donations to the goals of stopping Alzheimer’s and supporting affected families.

Will you join us in the fight to stop Alzheimer’s and in supporting families currently facing this journey each day? Please consider making a one-time or recurring tax-deductible contribution today by visiting http://marilynslegacy.org/donate.

We sincerely appreciate your support of our mission and wish you a blessed autumn and holiday season.

Ann Napoletan
Founder, Marilyn’s Legacy 💜

P.S. Stay tuned for new content coming soon.

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The Long and Winding Road

Marilyn, BA (before Alzheimer's)

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