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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Quotes

World Alzheimer’s Day: How Can You Make a Difference?

17 Thursday Sep 2015

Posted by Ann Napoletan in Advocacy and Awareness, ALZ Assn - National, Caregivers, Fundraising, Helpful Resources, Life After Caregiving, Prevention, Quotes, Ruminations, Tips, USAgainstAlzheimer's, Volunteering, Walk to End ALZ, Washington, World ALZ Month

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alzheimers, Alzheimers advocacy, alzheimers awareness, alzheimers caregivers, alzheimers prevention, alzheimers volunteerism, dementia, world alzheimers day

According to the World Alzheimer Report 2015: The Global Impact of Dementia, published by Alzheimer’s Disease International (ADI), there are 46 million people living with dementia globally. Without a medical breakthrough, that number will rise to 131.5 million by 2050. Worldwide, in 2015 alone, there will be 9.9 million new cases of dementia; that’s a new case every THREE seconds.

World Alzheimer’s Day is September 21, 2015, and it’s a great time to pause and think about what you can do to make a difference. You don’t have to be a brilliant scientist or a millionaire to make a significant impact.

Here are a few ideas to consider. If you have others, please share them by posting a comment below!

Take Care of a Caregiver

  • Deliver lunch, dinner, or a plate of homemade cookies. Send a restaurant gift card, or put together a group of folks willing to take turns cooking a couple of meals each week.
  • Mow the lawn, rake leaves, or offer to help with another household task.
  • Put together a spa basket! Think bath salts, lotion, candles, lavender essential oil, comfy slippers, et cetera.
  • Offer to hold down the fort for a couple of hours to give a caregiver a much-needed break. Perhaps they’d like to go shopping, see a movie, read a book, or just relax!
  • Simply send a card to say you care and offer your support.

Volunteer Your Time and Talent

  • Spend time visiting with memory care residents.
  • Volunteer at an Alzheimer’s Association event, join a committee, help with a special project, or offer to make phone calls.
  • Form a volunteer group to make fidget quilts or comfy blankets for people living with Alzheimer’s.
  • Volunteer to provide respite care during a caregiver support group meeting.
  • Become a support group leader.

Donate or Fundraise

  • Make a monetary donation to your favorite Alzheimer’s organization.
  • Sign up for Walk to End Alzheimer’s or The Longest Day and set a fundraising goal.
  • Donate puzzles, picture books, dolls, art supplies, or CDs to a nearby memory care unit or adult day care.
  • Sign up for AmazonSmile and designate your favorite Alzheimer’s organization as your charity.

Be an Advocate

  • Write or call your representatives in Washington and ask for their support on Alzheimer’s issues.
  • Commit to sharing an Alzheimer’s-related fact or statistic with three friends.
  • Use social media to help raise awareness.
  • Join the Alzheimer’s Prevention Registry!
  • Sign a petition.
  • Share your story!
  • Check out the Action Center at UsAgainstAlzheimer’s for more ideas!

Focus on Prevention

  • Commit to walking for 30 minutes at least 3x per week.
  • Each day, replace one unhealthy item in your diet with a healthier choice.
  • Make a monthly date to get together with friends!
  • Take the stairs instead of the elevator.

As Margaret Mead said, “Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.”

I’ve been told plenty of times that I’m wasting my energy. After all, I’m just one person can’t change the world My response to that is simple. I may not be able to change the world, but I can certainly make a positive difference – and you can too!

Here’s to World Alzheimer’s Day. May it be more than just another Monday – let’s all do a little something to further the #ENDALZ movement!

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When Alzheimer’s Steals Christmas

12 Friday Dec 2014

Posted by Ann Napoletan in Grieving, Guilt and Regrets, Holidays, Kobacker House, Life After Caregiving, Mom, Quotes, Ruminations, Saying Goodbye

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Tags

alzheimers, dementia, grief, grieving, holiday grief

Let your tears come. Let them water your soul.
– Eileen Mayhew

“The week” is here.

Two years ago at this time, I was sitting at Mom’s bedside focused on every subtle change in her breathing. The end was days, if not hours, away.

Final Days: The Vigil

Watching a loved one die is a surreal experience. Somewhere in the far reaches of your mind, you have this misguided, nonsensical notion that she’s going to get better. But your logical self knows that isn’t the case. You know that ultimately, you will be packing up her things and leaving this place without her. Just the thought of it leaves you with a knot the size of Texas in your stomach.

One minute, you are quietly talking to God asking Him to take her, praying that her suffering will finally come to an end. And then you find yourself begging Him for just one more day with her.

That last day comes; something is different. You know the end is near. You watch as she takes her final breath, and it’s as though you can feel her soul being lifted toward the Heavens. It’s a moment etched in your memory forever. You’ll replay that last breath in your mind a million times. Even two years later, it feels like just yesterday.

Did she know I was right there with her until the end? Did she know how much I loved her and how sorry I was for those early years when I didn’t handle things as well as I could or should have?

Did she just squeeze my hand? Did she blink? No, that must have been my imagination. Or was it?

All I Want for Christmas Is… My Old Memories

This year, for the first time ever, I decided not to put up the tree. I feel overwhelmed and quite honestly, I’m really looking forward the holidays being over. I know there will be moments of joy, especially with the little ones, but the holidays will never be what they once were.

Christmas at Eason House, 2010

Christmas at Eason House, 2010

I’m angry that we were robbed of so many years. And, I’m sad that I can’t actually remember the last GOOD Christmas we had at Mom’s.

Even now my most vivid memory of Christmas Eve dinner was the last year she cooked and hosted. We were so mired in denial that we tried to go on as if things were fine. But they weren’t fine at all.

Mom was frazzled; preparing the meal was no longer enjoyable for her. It was a strain. She couldn’t get the timing quite right. There wasn’t enough food for everyone. When we sat down for the annual game of penny rummy, she said she didn’t feel like playing. The reality was, she didn’t remember how to play. She had done all these things a million times, but it was clear now that Alzheimer’s was winning. It was the end of an era. And dammit, that’s what I remember about Christmas at Mom’s.

New Traditions

Circa 1988. Mom at age 52.

Last year, realizing how difficult December 15th would be, we decided to do something fun that Mom would have enjoyed. We would make the best of the day and honor her memory. Baking Christmas cookies made the most sense.

Oh how she loved to bake, and her cookie trays always looked just perfect. Thus began a new tradition, “Gram’s Cookie Day.” So, this weekend instead of drowning in tears over what’s been lost, we’ll bake some old favorites. I’ve no doubt she’ll be watching over us to be sure everything is up to her standards. (((smile)))

Yesterday, Today, and Tomorrow

My mom adored Christmas. She loved the decorations and traditions, loved being in the kitchen baking and cooking, and loved being surrounded by family. She was generous beyond words and it gave her such joy to watch as everyone opened the gifts she had carefully chosen.

I want to love the holidays as much as I used to; as much as Mom did. But, I fear those days may be gone forever. Now it seems the arrival of Thanksgiving is little more than a reminder of 2012.

December 15th will always arrive with a vengeance ten days before Christmas. There’s simply no way around it.

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Giving Thanks…

30 Sunday Nov 2014

Posted by Ann Napoletan in Advocacy and Awareness, Caregivers, God Winks, Holidays, Hospice, Inspiration, Life After Caregiving, Mom, Quotes, Ruminations, USAgainstAlzheimer's

≈ 7 Comments

Tags

alzheimers, Alzheimers advocacy, caregivers, caregiving, dementia, gratitude, thanksgiving

IMG_3830-beattieThe arrival of the holidays brings a flood of competing emotions for me. Exactly two years ago today, we brought hospice on board. It was a time of both despair and relief; things were changing moment to moment, and we had reached a whole new level of helplessness and desperation.

No matter how hard we fought, it seemed as though Alzheimer’s might be winning. Engaging compassionate hospice professionals brought a measure of comfort to a very uncomfortable situation – comfort in knowing we were surrounded by angels who were not only knowledgable, but also caring and empathetic. They were “all in” from the moment they arrived, and I felt like we were the most important family in the world to them.

Two years ago, we still held onto hope that with the intensive support, loving care, and indisputable expertise of hospice, mom might rebound one more time. However, that wasn’t meant to be. So, Thanksgiving remains a powerful, heart wrenching reminder of those final few weeks…

But this is also a time to reflect on the many blessings that have enriched my life over the past year. First and foremost, of course, are my family, faith, friends, and health. Without these, none of the rest would be possible.

I’m incredibly grateful for the opportunity to touch and be touched by so many caregivers and advocates through this blog, my Facebook page, the USAgainstAlzheimer’s Support Group, and Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias.

I’m grateful to have attended the WomenAgainstAlzheimer’s Out of the Shadows Summit this fall in Washington, DC, to be a founding member of ClergyAgainstAlzheimer’s and a contributor to the group’s first book, Seasons of Caring (December 2014). I’m thankful to have been a member of the steering committee for our local Walk to End Alzheimer’s and for the friends and supporters that generously contributed to our team, Marilyn’s Mighty Memory Makers.

I’ve crossed paths with some of the most passionate, inspiring people on the planet and been presented with countless opportunities to make a difference over the past year. I took a leap of faith, leaving the company I’d been with for almost 27 years, to join an organization with a strong mission I believe in. Five months later, I can say with confidence it was the right move and I’m finally where I was meant to be. For those things, I’m grateful.

I’m thankful I have been able to keep my mom’s memory alive, and that her spirit shines brightly on the world every single day. I’m thankful she’s still teaching me new lessons, inspiring me, and that she continues to touch thousands of lives. And I’m thankful to feel her presence on a regular basis.

To say I’m blessed is an understatement, but oh how I miss my mama.

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Marilyn, BA (before Alzheimer's)

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