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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Support system

Purple Angel: Who’s With Me??

29 Thursday Aug 2013

Posted by Ann Napoletan in Advocacy and Awareness, Helpful Resources, Support system

≈ 7 Comments

Tags

ALZ/Dementia Hospital Wristband Project, alzheimers awareness, dementia aware, purple angel

ostrich-purple-angel-sticker

Norman McNamara is asking for volunteers to help take the Purple Angel worldwide. The UK is making great strides toward increasing awareness, and the Purple Angel has hit Florida thanks to Gary LeBlanc’s fantastic project.

Dementia Awareness Around Town

Now it’s time to make customer-facing BUSINESSES in the U.S. dementia aware.

Unless you’ve taken someone with Alzheimer’s or another form of dementia out shopping or to a restaurant, you can’t appreciate how challenging it can be. People just don’t understand, and we need to change that.

Those who come in contact with the public on a regular basis should understand dementia, recognize the signs, and know how to treat customers who have the illness with kindness, dignity, and respect. The Purple Angel campaign can help…

Enter OstrichUK

The wonderful folks at OstrichUK have given this project a massive boost. Thanks to Ostrich (ostrichcare.co.uk) tens of thousands of distinctive Purple Angel stickers and information posters are now available for distribution.

The idea is for customer-facing businesses to encourage dementia awareness in their associates by asking them to read an informational poster. Once the information has been shared, participating shops and restaurants will receive a special Purple Angel sticker to display in their window. When customers see that sticker, they can be assured the business is aware of the special needs of patrons who suffer from dementia.

Get Involved!

Are you willing to do a little bit of legwork to help spread the word in your town OR are you a business who would like to participate? The idea is very grassroots and beautifully simple – and just imagine the power of this campaign if everyone were to pitch in.

To order Purple Angel Dementia Aware stickers FREE, email hello@ostrichcare.co.uk. The stickers come in batches of 50 and are accompanied by informational posters and basic tips for sharing. Remember to include both your email and postal addresses in your request.

If you are a business who would like to become dementia aware and proudly display a Purple Angel in your window, contact me at anapoletan(at)gmail(dot)com for more information.

And Speaking From Experience…

Let’s do this. As someone who has personally experienced the discomfort and awkwardness of taking my mom out – even early in her illness – I can assure you the Purple Angel campaign will make a positive difference to many families!

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To Tweet Or Not To Tweet…

31 Wednesday Jul 2013

Posted by Ann Napoletan in Grieving, Kobacker House, Saying Goodbye, Support system

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This week, NPR host Scott Simon tweeted from his mother’s bedside as she reached the end of her journey on Earth. And of course, people chimed in with their two cents about whether or not sharing such intimate moments with the world was appropriate. 

My mom has been gone for 7 1/2 months now, but I remember those last days like they were yesterday…

A particularly special and treasured memory … one of my dearest friends and I painting Mom’s nails as she lay quietly sleeping. By then, we knew it wouldn’t be long – the end was near. The wonderful staff at Kobacker House dressed her in a pretty fresh nightgown each morning and she needed pretty pink nails to match…

mom handsI’d give anything to hold her hand again. Such a simple thing, yet so often we forget it’s those simple things that matter when nothing else does. We lose sight of what is truly important as we go about our busy lives. But holding someone’s hand – that’s important.

“When she asked for my help last night, we locked eyes. She calmed down.
A look of love that surpasses understanding.” ~Scott Simon

There has been considerable debate over whether Scott’s tweets have been too personal… some people don’t feel this type of sharing was appropriate. But, I understand Scott’s need to express himself this way. As I sat with my mom in those final days, I found connecting with people via my blog and FB very comforting. Sharing those moments – it was cathartic in a way. It’s impossible to explain; I guess I needed for people to understand what we were going through. I needed to know people cared and that I wasn’t alone.

Everyone handles things differently. I heard a psychologist weigh in on the topic last night, saying that this form of expression is understandable and can be extremely therapeutic for some people. Just as we don’t criticize those who prefer to grieve in silence, neither should we criticize those who find some solace in connecting with others – through whatever means they choose.

May Scott’s mother rest in peace, and may he find peace as well…

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Raining Buckets & God Winks

03 Wednesday Jul 2013

Posted by Ann Napoletan in God Winks, Inspiration, Life After Caregiving, Mom, Ruminations, Support system

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photoskyIt’s been raining in Ohio. Non-stop. Sheets and sheets of rain. Morning, noon, and night. In fact, I’ve heard rumors of arks being built all over town. But today, the sun came out, the sky was blue, and it was absolutely beautiful.

Mom, Is That You?

As I was driving home, I couldn’t help but notice the spectacular clouds in the sky and my mind was consumed with how lovely the view must be from Heaven. On a day like today, there’s no doubt the angels were smiling.

It was one of those days where I felt Mom’s presence nearby – actually, I’ve felt it for a few days now, but today she was very intentional about sending a message.

Birth of an idea

A long while back, I began pondering the idea of setting up an Alzheimer’s support group at work. I’ve lost track of the number of people who have approached me, whether knowing our story directly or through a friend or friend of a friend; people who are on their own ALZ journey, looking for advice about this or that, or just needing someone to talk to.

The thought pops into my head, and then I get busy or distracted and forget about it until it pops into my head again. Yesterday something happened to make me begin thinking about it, but this time I decided to actually do something. I sent an email to one of the nurses in Associate Health Services to inquire as to whether this was feasible. Had thought ever been given to creating a group along these lines? How would one go about doing so? I’d be glad to facilitate… yada, yada, yada.

Mystery Envelope

Fast forward to this morning. That same nurse (Sue) left me a voice mail message that literally had me in tears. Leading up to her call I wasn’t feeling emotional at all, but she was just one of those people with one of those voices. Her compassion was evident and the tears came easily.

This afternoon when we finally connected, she gave me some thoughts on getting a group set up. Of course, as with anything in a large corporate environment, nothing is simple, but that’s another post for another day. As we were nearing the end of our conversation, someone came in and laid a piece of inter-office mail on my desk.

As soon as I hung up the phone, I opened the envelope to find a card with a picture of my mom tucked inside. A former co-worker of hers had found it and thought I would like to have it, which in and of itself made me smile. The picture, circa 1988, was adorable – she was participating in some sort of silly office dress up day in typical Marilyn style.

When God Winks

But what really struck me was the timing. I never get mail, and for that to land on my desk just as I was finishing a conversation about creating an ALZ support group at the company my *Mom retired from – prompted by a call I received yesterday from another former co-worker of hers who had a friend looking for someone to talk to about her mother’s worsening ALZ. (By the way, I know that’s a ridiculous run on sentence, but sometimes there’s just no way around it. *sMiLe*)

Call it a God wink, call it a coincidence, or call me crazy, but I took this as Mom whispering in my ear telling me that I should push forward with the support group.

If only I could get her advice on the other 50 things taking up space in my brain!! ♥

 

* In August, I’ll mark my 26th year with the same company my mom retired from in 1998.

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Marilyn, BA (before Alzheimer's)

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