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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Tag Archives: dementia

Waiting For Someday

13 Friday Jun 2014

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

≈ 4 Comments

Tags

alzheimers, alzheimers lessons, dementia

Mom’s Retirement, 1998, Age 62

Life.

The natural ebb and flow.

Inhale. Exhale. Repeat.

Change is in the air.

I feel like I’ve been particularly introspective this week, in a good way. Having made a huge, life-changing decision, it seems rather fitting. After 27 years, I left the only company I’ve ever worked for as an adult… 27 years. A lifetime. But it was time. Beyond time, probably.

Paralyzed by What Ifs

By nature, I’m not a risk taker. For most of my 48 years, I’ve played it safe. Followed the rules. Colored inside the lines. Did what the world expected. I haven’t taken a lot of chances. Until now.

Mom’s Retirement Party

Seeing my mom suffer the ravages of Alzheimer’s for the better part of a decade. Watching as this disease robbed her of the opportunity to live the retirement she had planned and prepared for so carefully. Friends, travel, the “golden years” we all dream of experiencing someday – for Mom, it wasn’t meant to be.

The lesson is simple – “someday” isn’t promised. For years, I’ve been saying I needed a change. “I’m going to do this” and “I’m going to do that.” But it was all talk and no action. Fear of the unknown always got the best of me. What if it doesn’t work out? What if I fail? What if, what if, what if? Ah, but what if becoming complacent is the real peril?

If my mom had known her fate when she was my age, would she have done anything differently? It’s impossible to say. I suspect she may have taken that Alaskan cruise or gone to Italy rather than putting those dream vacations off until “someday.”

Striking a Balance

Ultimately, there has to be a balance between living for today and preparing for tomorrow. I voluntarily walked away from the “sure thing” to embark on the unknown. To be honest, I still can’t believe I did it. And more than anything, I can’t believe how easy the decision was.

For that, I have to thank my mom. Gone 18 months, yet she is still teaching me about life. It may sound cliché, but I know she’s been guiding me throughout the decision making process. More than once, I told myself I was crazy and tried like hell to talk myself out of the change – but without fail, there was an unexplainable pull back toward taking that leap of faith.

I’d be lying if I didn’t say I was apprehensive. Change is scary. However, more than anything I’m filled with hope and anticipation. I don’t remember the last time I felt so excited or had such a positive outlook. I’m going to a company whose mission is right in line with my passion – what I do will have a direct impact on providing affordable housing for seniors. I feel like the possibilities are endless and the future is bright.

The Lessons Keep Coming

That’s my mama!

Perhaps there’s a reason I never took the leap before; maybe this was the opportunity that was meant to be. There are a lot of things in life I don’t know, but the one thing I’m certain of is that dealing with Alzheimer’s has profoundly changed my life.

I sweat the small stuff much less than I used to. I take greater joy in the simple things. Those I love, I love deeply and unconditionally, I try to make a difference in the world every day, I pick my battles, and I constantly remind myself that tomorrow is not guaranteed.

Finally, I’m learning it’s okay to color outside the lines…

Thanks Mom…

 

 

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Coconut Oil: A Hot Button?

03 Tuesday Jun 2014

Posted by Ann Napoletan in "Super Foods", Alzheimers.net, Coconut Oil, Diet, Helpful Resources, Mom, Ruminations

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Tags

alzheimers, coconut, coconut oil, dementia

Image courtesy of Suat Eman / FreeDigitalPhotos.net

Coconut oil. It’s a very controversial subject in the world of Alzheimer’s.

Some online support groups actually ban posts about coconut oil suggesting any discussion on the topic gives people false hope.

There is no cure for Alzheimer’s.

No survivors.

No cure.

Simply put, if coconut oil cured Alzheimer’s, well… I wouldn’t be writing this. In fact, this blog wouldn’t exist at all. What a wonderful thing that would be, but for now, as the saying goes, “if ands or buts were candy and nuts, then every day would be Christmas!”

Coconut Oil and Brain Health

Last spring, I wrote an article for Alzheimers.net exploring coconut oil’s potential impact on brain health. If I had known about it ten years ago, would I have tried adding coconut oil to my mom’s diet? You bet your bottom dollar. I would have tried anything in an attempt to stave off the symptoms for as long as possible. Am I convinced that adding it to my diet will prevent me from getting this insidious disease? Not at all. Do I think it’s the magic antidote we’ve all been looking for? No.

Image courtesy of Toa55 / FreeDigitalPhotos.net

However, my *personal opinion is – no harm, no foul. I’ve replaced my old cooking spray with a coconut oil spray. I stir a teaspoonful of the solid form into my coffee or oatmeal, and I cook with it when it makes sense to do so. I also use coconut milk – simply because I like the taste! I believe there are overall health benefits associated with coconut, but my advice is simple. Do your research, discuss with your doctor, and make the choice that’s best for you.

Ultimate Guide to Coconut Products

Should you decide to explore adding coconut products of any sort to your diet, Lisa Richards provides an excellent Ultimate Guide to Coconut Products. On this page, she discusses everything from coconut oil to coconut flour to coconut….vinegar??! Yes, that’s right – coconut vinegar! Lisa’s guide is chock full of information; everything you wanted to know about coconut and more!!

*Disclosure: I am not a doctor, nor have I ever portrayed one on TV. The statements herein are my opinions and do not constitute medical advice.

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Dementia Mentors Site Launches June 1st!

24 Saturday May 2014

Posted by Ann Napoletan in Activities for Your Loved One, Advocacy and Awareness, Caregivers, Early Onset, Events, Helpful Resources, Inspiration, Support system, Technology, The Early Years

≈ 8 Comments

Tags

alzheimers, dementia, dementia activities, dementia awareness, dementia mentors

Where there’s hope, there’s life. –Norman McNamara

Many of us have had a mentor at one time or another during our lives. They guide us, offer words of wisdom, and provide feedback on our ideas or problems. A teacher may serve as a student’s mentor, or someone in a more senior position at work may mentor a less experienced associate. The role might be formal or informal. There are no set rules, but generally the relationship involves trust, counsel, and mutual respect.

No Longer Alone

Imagine receiving a diagnosis of Alzheimer’s or another form of dementia. Few things would be as frightening; few things would elicit such a strong sense of being alone. But what if, upon diagnosis, you were introduced to a dementia mentor? How might that change things?

Well, Gary LeBlanc, along with Norman McNamara (UK), Harry Urban (US), Barry Pankhurst (Indonesia), Chris Roberts (Wales), Richard Taylor (US), and others are preparing to launch a project that has been almost six months in the making. This collaboration between friends and advocates around the world is groundbreaking. Nothing like it has ever been done, but it promises to change the way people deal with the diagnosis and the fear, uncertainty, and loneliness that comes with it.

On June 1st, the Dementia Mentors website will be unveiled. The site was designed and built by Harry Urban, founder of Forget-Me-Not. Harry is living with dementia so he knew exactly what was needed to make the site dementia friendly. The goal is simple: to provide newly diagnosed individuals with the tools they need to start this journey on the right track, from the moment the diagnosis is received.

Those Dreaded Words – And Then What?

Those involved in this project know firsthand how frightening it is to hear the words, “You have dementia.” Imagine hearing those words, then being handed a prescription and told to “come back in six months.” In many cases, that’s exactly what happens. Chris Roberts of Wales describes being stunned and in shock, head spinning such that he didn’t know where to turn.

My personal experience with Mom was similar. Although I absolutely loved the family physician we were seeing at the time, we essentially left the office after each visit knowing things had gotten a little worse but with no resources to help us understand what was happening or connect us with those who could. That was a while ago, and fortunately, I think things have begun to change a bit; at least people are talking about it more now. But, that being said, we have a long way to go.

Renewed Hope

Dementia Mentors is about helping newly diagnosed patients understand their lives aren’t over. In fact, quite the contrary! When one looks at everything people like Norrms McNamara and Harry Urban have accomplished since their diagnosis, it’s nothing short of incredible. These men are true pioneers and are inspiring hope around the globe.

Chris Roberts says, “It’s about what you can do, not what you can’t,” and that’s the message the founders of Dementia Mentors want to convey.

the journey beginsHarry is quick to encourage people not to give up, assuring them they do have a meaningful life ahead of them. In this digital world where Google has become our best friend, it’s vital for folks to realize that when they hit the Internet for information, they will likely be bombarded with material about the later stages of the disease. The disease isn’t JUST the later stages! Yet, there tends to be very little information out there about the earlier stages. This is where Dementia Mentors comes in.

  • Imagine a website created by dementia patients, for dementia patients. That means simple navigation, pleasing to the eyes, clear, and concise presentation. Someone having problems reading the text can simply click a button to hear the passage read aloud.
  • Imagine being able to listen to people who are actually living with dementia discuss a wide variety of topics – all from their own unique point of view and based on real life experience. At launch, the site will have approximately 30 pre-recorded videos, no more than three minutes in length. Additional videos will be added in the coming months.
  • Imagine having a face-to-face video chat with someone who has walked/is walking in your shoes. Patients will be able to schedule an appointment to talk one-on-one with a mentor. Keeping to the dementia friendly theme, a simple mouse click is all it will take to be connected with a mentor via both audio and video. Of course, all discussions will be completely confidential.
  • Imagine one-stop access to over 70 puzzles and activities, all designed with dementia patients in mind. The activity page will be updated with new material regularly to keep it fresh and interesting.
  • Imagine quick, easy access to virtual memory cafés where patients can enjoy socializing with one another. People like Harry, Chris, and Norrms credit keeping busy, maintaining social connections, and staying engaged with helping them keep progression at bay. The beauty of social media – no one ever needs to feel alone.

The Vision

Gary and his team envision today’s mentees becoming tomorrow’s mentors. The value of helping others can’t be overstated. We all feel more energized, hopeful, and positive when we know we’ve made a difference to another person. That’s what Dementia Mentors is all about – people helping people. Everyone involved benefits from the program; each life is enriched along the way.

This project is innovative and 100% grassroots-based. All participants are donating their time and the team is seeking additional mentors. They would like to have every corner of the world covered, so that people can be connected 24 hours per day, seven days per week. According to Gary, there are 15 mentors on board as of this writing, with many others expressing interest already.

Friends Helping Friends

friends helping friendsThe Dementia Mentors tagline says it best, “Mentoring, Motivation, and More. We Help You Rule Your Dementia.” I truly believe that is the key – rule it, don’t let it rule you. We didn’t do that with my mom. At that time, we didn’t even talk about it let alone think there might be a way to connect her with others who could understand her fears so much more than we could. What a blessing that would have been…

You can help by spreading the word about the June 1st launch and directing people to http://www.dementiamentors.org. By doing so, you, too, will truly be making a difference! If you or someone you know would like more information about the project, please send a message via the “Contact Me” link at the top of the page and I’ll put you in touch with Gary!

____

Gary LeBlanc is an author, columnist with the Tampa Tribune, founder of the Alzheimer’s/Dementia Hospital Wristband Project, a Purple Angel Ambassador, and former caregiver to his father who lived with dementia. You can visit him at Common Sense Caregiving.

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Marilyn, BA (before Alzheimer's)

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