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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Inspiration

Coming Soon….and a Fabulous Read for Caregivers

29 Thursday Aug 2013

Posted by Ann Napoletan in A Place for Mom, Advocacy and Awareness, Blogging, Caregivers, Films, Inspiration, Life After Caregiving

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alzheimers, caregiver, caregiver burnout, caregiver stress

Ah, it’s been a busy week and I’m already asking myself how in the world I was managing three weekly posts for APFM. For some reason, this week I feel like I’ve been running at hyper-speed yet have gotten very little accomplished!! wheel

I promise a review of Angel’s Perch by the weekend, so be sure and check back. It’s been two weeks since the Columbus screening, and I’m still hearing from people who thought the movie was just incredible!

In the meantime, I want to leave you with this wonderful article from Mark B. Perry for dnj.com. It’s been awhile since I’ve read something that hit home so deeply and on so many levels.

The original article can be found in its entirety here –> PERRY: Alzheimer’s takes its toll on those in daily battle

____________

Alzheimer’s takes its toll on those in daily battle

by Mark B. Perry

For those of you who have had an experience with someone with Alzheimer’s, you are fully aware of the toll it can take on you.

I recently saw pictures of soldiers that had been in Afghanistan; they were before and after pictures. It was obvious that the constant worry and stress of their situations as well as the loneliness of missing their loved ones back home, had taken its toll on them. It reminded me a bit of what I see in the mirror every day.

I know I haven’t had to go through the horrors of what our soldiers have gone through, and I haven’t had the stress of literally fearing for my own life on a daily basis, but in the mirror, I can see what a long drawn-out battle has done to me and the toll it has taken.

I can see it in the faces of people who are taking care of their parents and their spouses. The hours of furrowed brows and thousands of tears have etched and grooved and new landscape across our faces that no amount of smiles can smooth away. Just as gravity pulls at the body and ages it, so stress and worry weigh us down

We are at war; we are in a battle. We are fighting something bigger than ourselves that we cannot defeat. Our days are long and drawn out and we are forced to do things we never thought we could do mentally or physically.

We are fighting a disease that knows no enemies and has never been defeated. We fight to keep our loved ones safe from harming themselves, wandering off, or simply from falling down. We fight to keep them involved while fighting to protect their dignity. We fight our frustrations in them not knowing who we are.

We fight the urge to argue when they want to go home even though they are already in their own home. We fight to convince them to do the basics of daily life. We fight to keep it together when they tell us the same thing every five minutes.

We struggle daily with the guilt of our bad decisions and letting someone else help to take care of our loved ones. We worry when we leave them alone with caretakers that they will be watched after and cared for and that no one will show them their own anger and frustration. At night we lie awake and worry about the day we just had and how we will handle the next one.

But each day, we gear up and face the battle. We do it to protect our loved ones. We do it because we have to and we want to and we are scared to death not to. The toll it takes on us is great. As hard as we try, our minds never really wander away from our task at hand.

Just like a soldier that comes back from war, when our loved ones have passed away, we need time. We need time to re-adjust when it is all over.

We are battered, shell-shocked and tired, but in time, we will pick up the pieces and find the good to remember and take pride in knowing that we made a difference; we did our best, and even though probably never expressed, it was appreciated. No one can really understand unless they have been through it. We can’t expect them too. What we must do is continue to pursue a happy life that we know our loved ones would so desperately want us to have.

Once a year we all come out of the trenches for a moment, and we join together, we march, we walk. In over 600 towns across this country, we gather in groups and walk to show our support for all the work that is being done to fight this horrible disease.

If you would like to help and join forces in time, support or even with finances, you can go to www.alz.org and look for the Walk To End Alzheimer’s in your area. There are many teams from healthcare organizations, caregivers and families. For my mom, Ann Perry, we are www.thememoryjoggers.com.

Don’t be discouraged if you don’t have the funds to help out financially. There are other organizations that require nothing more than a click.

One great organization that is working hard to get the government to increase the funding for Alzheimer’s research is http://www.usagainstalzheimers.org.This is a powerful group that is really starting to make things happen by making our government understand the epidemic situation we are facing and the economic impact it will have on our future.

Another that I love is the grassroots campaign to get a postage stamp (much like the one for breast cancer) for Alzheimer’s. These type stamps have raised millions in the past. That site is https://www.facebook.com/HelpStampOutAlzheimers.

Whatever you can do, do it. Do it for those you love and do it for future generations so that years from now, the Walk to End Alzheimer’s will be nothing more than a distant memory.

Source: http://www.dnj.com/article/20130820/OPINION/308200013/PERRY–Alzheimer-s-takes-its-toll-on-those-in-daily-battle?source=nletter-news

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A Letter From Fred

27 Tuesday Aug 2013

Posted by Ann Napoletan in Inspiration

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What a beautiful love story….

Full story can be found at: http://www.today.com/entertainment/man-96-enters-song-contest-pay-tribute-love-his-life-8C11004674

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An Evening of Love, Light, and Angel’s Perch

15 Thursday Aug 2013

Posted by Ann Napoletan in Advocacy and Awareness, Events, Films, Inspiration, Smiles

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Angel's Perch

AngelsPerchCollage2SmI plan to write a longer post, including a review of the film, but for the moment I just want to say thank you to everyone who supported this endeavor. It was an unforgettable evening, and I had the pleasure of meeting so many lovely people. My only regret is that I didn’t have more time to talk with everyone.

The film… well, in a word, it was spectacular. I want to take the time to write a review worthy of J.T. Arbogast’s beautiful work. Everyone should see this film.

To that end, if you ARE interested in bringing Angel’s Perch to a theater in your area, Tugg.com makes it easy to do.

Just visit http://www.tugg.com/titles/angels-perch.  Click the blue Create Event button in the upper right hand area of the page, and you will be guided through the process. The people at Tugg are GREAT to work with and provide lots of tips on promoting your event. Likewise, J.T. and Kim are wonderful and will do whatever they can to help you succeed!

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Marilyn, BA (before Alzheimer's)

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