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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Inspiration

Alzheimer’s: It’s Not Contagious

20 Sunday Oct 2013

Posted by Ann Napoletan in Advocacy and Awareness, Caregivers, fear, Inspiration, Mom, Ruminations, Smiles, Support system

≈ 14 Comments

Tags

alzheimers, alzheimers support, caregiving, dementia

Sunday evening snuggle nap... I saw a picture a few days ago, and it’s been on my mind ever since. The image was that of an older woman sitting alone on a bench looking off into the distance. The caption said, “Alzheimer’s isn’t contagious.”

As advocates, we place a great deal of emphasis on funding for research – we think a lot about the future – hopefully one without Alzheimer’s. And all of that is tremendously important. However, the image of that lonely woman reminds us we must also focus on those living with the disease today.

Lonely Days

How many dementia patients sit alone in a facility, day after day, month after month, and year after year? One might argue that technically they aren’t alone; there are people around, the hustle and bustle of daily goings on, shower time, mealtime, and an occasional balloon volleyball game.

Don’t fool yourself – they are alone.

This begs the question, why do friends and family head for the hills when they hear the word “Alzheimer’s?” It’s something I see mentioned regularly in various caregiver forums. In addition, more and more courageous individuals who are in the earliest stages of the disease are speaking out; these are folks who still have so much to contribute to the world, yet at the first mention of the “A” word, people begin writing them off.

Here Today, Gone Tomorrow

So why is this post-diagnosis mass exodus so common?

Is it the fear of being asked for help? Is it too difficult for them to see? Do they just not want to be bothered? Or do they think the person is already gone so there’s no sense in visiting? Eason House

Not many would admit to most of these, though I have had a few people tell me it was just “too hard” for them to see my mom “that way.”

One can only imagine how egocentric that sounds to a caregiver who faces the tremendously harsh reality of Alzheimer’s every day. I think all caregivers will agree it’s no picnic for us to watch a loved one slowly drift away into the world of Alzheimer’s, but we weren’t given a choice in the matter. However, every moment we spend with them is ultimately a beautiful blessing.

Food for Thought

I want people to understand several critical points, and if reading these words encourages just one person to visit a friend with dementia, I’ll consider that a victory.

  • Regardless of how far along someone is in the disease, in many ways, they are still same person. Perhaps they have difficulty communicating and can’t do the things they once could, but they are very much alive. My mom’s spirit and spunk, along with many of her other personality traits were apparent until the very end. She was still Marilyn through and through.Eason House - Faces.small
  • You have the power to give one of the most precious gifts in the world – a simple moment of joy – to an Alzheimer’s patient. It doesn’t cost a dime, just the time it takes to sit and talk with them, stop by with a favorite treat, or simply hold their hand for awhile. Sure, they’ll forget the visit, but the way you made them feel will remain. You will have brightened their day and what could possibly be more important than that?
  • Our situation was pretty typical; very early on, even while my mom was still at home visits became less frequent. Eventually, most everyone had disappeared. But I think those few who did remain stalwart supporters would tell you they reaped rewards beyond measure by spending that precious time with Mom. I would venture a guess that as difficult as it was for them to watch their friend decline at the hand of Alzheimer’s, they felt they received back just as much as they gave. The love, warmth, and yes, the joy, of connecting with an Alzheimer’s patient is a unique and special gift.

Glass Half Full or Half Empty?

One might lament the fact that “she’s a mere shell of the person she used to be,” and there’s no doubt this is one of the most heartbreaking, devastating diseases that exists. But even in the worst of circumstances, there is room for a bit of the “glass half full” mentality. MomJessHands

Remember that even after a person with Alzheimer’s can no longer speak, they need love and affection. They don’t cease to be a human being.

You can’t put a value on a simple smile or a gentle touch. It definitely requires stepping outside of one’s comfort zone and setting aside the deep personal sadness and fear that may exist. However, it’s likely the 30 minutes you spend with an Alzheimer’s patient will be the most meaningful part of your day.

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Purple Angel Ambassadors – Last Chance to Apply

15 Tuesday Oct 2013

Posted by Ann Napoletan in Advocacy and Awareness, Inspiration, Purple Angel

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Tags

alzheimers, dementia aware, dementia aware communities, dementia awareness, purple angel

dementia-aware-smallI received the following from the amazing Norman McNamara today – please take a look and share with anyone who might be interested in applying to be a Purple Angel Ambassador!

__________________________________

Good morning all, LAST CHANCE!! In the next couple of days we will be going through the Purple Angel Applications to become Ambassadors for this wonderful cause. ostrich-logoIf you, or you know anybody who wants to become part of this ever growing movement to raise awareness about this awful disease, please APPLY NOW!!!! Please please help, your help will help thousands of people, just click on this link (Please disregard expiry date ) and get in touch with Ostrich care, thank you so very very much. Norrms and family xxxxxxxxxxx

http://www.ostrichcare.co.uk/blog/Ostrich-Blog/2013/09/19/We-need-you-Become-an-Ostrich-Purple-Angel-Ambassador

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Friday Potpourri

27 Friday Sep 2013

Posted by Ann Napoletan in Advocacy and Awareness, Books, Caregivers, Children and ALZ, Events, Giveaways, Helpful Resources, Inspiration, Support system, USAgainstAlzheimer's, World ALZ Month

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alzheimer's books, alzheimers awareness, caregiver, caregiver stories, usagainstalzheimers, world alzheimers month

heroJust a couple of tidbits that may be of interest…

  • In honor of her mother, World Alzheimer’s Month, and the upcoming NYC Walk to #ENDALZ, author and caregiver Lisa Hirsch will be offering her ebook, My Mom My Hero: Alzheimer’s – A Mother and Daughter’s Bittersweet Journey free of charge for 4 days, Sept 28 through Oct 2. Visit Amazon to download your copy. Thank you for your generosity Lisa!
  • Oct 3 USAgainstAlzheimer’s Conference Call – Register NOW!

From Ginny Biggar of USA2:

Please join me on Thursday, October 3 from 12-1 pm Eastern time for the next ActivistsAgainstAlzheimer’s Network conference call focused on Personal Stories. I may be familiar to some of you. For those that don’t know me, I’m the director of the Activists Network at USAgainstAlzheimer’s. I work with individuals around the country who are coping with Alzheimer’s every day.

usa2_logo_email_header

Part of my focus is listening to the stories that you and others tell about how Alzheimer’s is affecting your lives. Telling these stories is a critical way we can raise awareness about Alzheimer’s.

Why_Did_Grandma_Put

  • Last but not least, don’t forget to enter for a chance to win Max Wallack’s fantastic book, Why Did Grandma Put Her Underwear in the Refrigerator?  All you have to do is – click here – and leave a comment on the contest post. A winner will be chosen at random on Sunday evening (Sep 29).

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Marilyn, BA (before Alzheimer's)

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