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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Saying Goodbye

When It’s Time to Say Goodbye

14 Thursday Dec 2017

Posted by Ann Napoletan in Grieving, Inspiration, Mom, Reblog, Ruminations, Saying Goodbye

≈ 3 Comments

Tags

bucket list, death and dying, end of life, grief, grieving

This is a piece I wrote back in 2011. It isn’t specifically about Alzheimer’s, but it is about life, a topic I’ve spent a significant amount of time ruminating on this year.

Tomorrow marks the 5th anniversary of my mom’s passing, and Christmas will mark the 6th anniversary of my dear friend’s mother’s passing. I saw “G” tonight, which is what prompted me to go back and pull this from the archives so I could re-read it.

I hope Evey’s story touches your heart….

December 28, 2011

Tonight I went to calling hours.  Our dear family friends of 20+ years lost their mother/grandmother on Christmas Day.  She had finally succumbed to cancer after a long, valiant battle.

I’m 46 years old, and I still never know what to say at times like this.  Nothing sounds right. Nothing. I guess all you can do is hope that the presence of friends helps to ease the pain, if just a tiny bit.

After talking to my friend tonight at the church, I found myself feeling oddly inspired. As she described their last trip to Florida this fall, she told me that her mother had completed everything on her bucket list.  Every.single.thing.  I wonder how many people can say that.

The last thing on the list was the celebration of her 62nd wedding anniversary, and she made it.  She marked that milestone and celebrated with her loving husband just a week before she left this earth.  She was well enough for them to go out to dinner and enjoy a lovely date night, which I imagine will remain one of his most treasured memories of her.

I have to say, I’m not much of a believer in happily ever afters when it comes to marriage, but G’s parents definitely seemed to defy the odds and find true, everlasting love.  Their entire family will be in my prayers, but particularly G’s dad who is now faced with adjusting to life alone after so many years with his soul mate.  I’m sure, though, that she won’t be far – watching over him day and night until they meet again.

In the end, Evey did what we should all strive to do.  One by one, she crossed every single item off of her bucket list.  When she finished, she was ready to take the next journey, having done everything she was meant to do here on earth…

What’s on your bucket list?  Have you thought about it?  Have you said the things you need to say and done the things you need to do?  Tomorrow isn’t promised.  We all need to get busy, don’t we?  Thank you, beautiful Evey, for the inspiring reminder…

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Four Years: Remembering 12.15.12

15 Thursday Dec 2016

Posted by Ann Napoletan in Advocacy and Awareness, Caregivers, Grieving, Hospice, Kobacker House, Life After Caregiving, Mom, Ruminations, Saying Goodbye

≈ 4 Comments

Tags

alzheimers, alzheimers caregiving, alzheimers grief, dementia, grieving, missing mom

I try to take December 15th off every year; I want to be able to sit with my thoughts and emotions without the rest of the world interrupting.

Four years ago on this date, my mom was freed from Alzheimer’s disease; it was December 15, 2012, that she earned her angel wings after a long, exhausting battle against a disease that always wins.

Memories of that day remain vivid. We were at Kobacker House, a beautiful inpatient hospice facility that cared for us with such compassion when we needed it the most. We knew the end was very near. Never have I been so overwhelmed with competing thoughts:

“God, please, not yet. I’m not ready to say goodbye. Please bring us a miracle.”

“God, please take her. She’s ready. She has fought hard and she’s so tired. I know that it’s time. Let her be at peace.”

“God, no. Please, one more day with her.”

“Please, God… take her home. Let her be whole again, free of pain. It’s time.”

By that Saturday, there was nothing left of her earthly shell. Those nine days were the most agonizing of my life.

That morning, I sat next to her bed holding her hand, stroking her head, and telling her how much I loved her. I whispered that it was okay for her to go, we would be fine, and I told her she had been the best mother a daughter could ask for. Her eyes were closed. There’s no way of telling what she could hear or understand. The day before, I felt her squeeze my hand every so lightly when I told her I loved her. I still don’t know if that was real or imagined; I’d like to think it was real.

As the morning wore on, a feeling washed over me – she would be going soon. I called our dear friend, Emily, and left a voice mail asking if she would come and be with us. Emily had worked for my mom many years prior and remained a constant in our lives, visiting Mom weekly long after everyone else had stopped. She is also a woman of deep faith. Jess and I agreed her presence would be comforting for all three of us.

Not long after leaving that message, shortly after noon and still at Mom’s bedside, that feeling enveloped me again – stronger this time. I called across the room to Jess, telling her she should come over. Seconds after she arrived at my side, Mom took her last breath. Her soul was lifted from her physical body right before our eyes in a moment that will remain etched in my mind forever. I’ve never experienced such a spiritual moment.

I had been holding the reins for all those years, and once it was over, I crumbled. The rest of Saturday and the ensuing days were a blur. Carrying all of our belongings to the car, arriving at home and feeling entirely spent. Lost. The grief was so powerful that my body was racked with physical pain.

One would think that after such a long debilitating illness, where we lost a bit of her with every passing day, I would have been prepared. Hadn’t I been grieving for years and years? I really thought when this time came I would feel a sense of relief.

Instead, I was hit hard with the realization that I would never again see her smile, feel her touch, or hear her voice. In my experience, this grief was entirely different than the anticipatory grief I’d been feeling for as long as I could remember. The finality of this was excruciating. I cried for days.

Four years later, the piercing, raw pain of those early days has faded, but in many ways, I miss her more as time passes. There are a million things I wish I could sit down and talk to her about – a decade-plus of things I need to catch her up on – and every year, that list gets longer.

In October, she would have turned 80. I think back on how vibrant she was before AD came into our lives. I always envisioned her as a “young” 80-year-old with a calendar full of travel plans and social activities. I could have never imagined how things would unravel at the seams. The lesson is – we simply don’t know what life has in store for us.

I think our long journey made me a better person in many ways – more compassionate and empathetic, and certainly more committed to serving others for the greater good. Life means more now; I want to be a part of something bigger than myself and I’m determined to leave some sort of legacy behind.

Christmas at Eason House, 2010

As an introvert and empath, it has always been hard for me to exist right at the surface – my thoughts tend to live much deeper in my soul. Following our Alzheimer’s experience, I have less need for idle chitchat and much less tolerance for things that don’t really matter. I suppose I’m more introspective than ever. I’ve never been terribly driven by money and it’s even less important now. I really just yearn for a slower pace and a less stressful lifestyle.

Today, as I reflect on life, love, and loss, I just hope Mom knows how much I love her and that she’s proud of the work I do to honor her legacy. I would love to be able to tell her just how much her story has touched the hearts of others. Her memory lives on and she continues to inspire not just me, but so many others.

 

 

 

 

 

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Remembering Pat Summitt

28 Tuesday Jun 2016

Posted by Ann Napoletan in Advocacy and Awareness, Celebrities, Face of Alzheimer's, Grieving, Pat Summitt, Quotes, Saying Goodbye, USAgainstAlzheimer's

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Tags

alzheimers, dementia, Pat Summitt

pat_summitToday, our hearts are heavy with the loss of a legend – a loss at the hand of Alzheimer’s.

May Coach Summitt rest peacefully knowing she impacted countless lives during her time on this earth. What a tremendous coach, role model, and human being.

My mother was an avid follower of women’s basketball and a big fan of Pat Summitt. Both were beautiful, strong, vibrant, seemingly invincible women – and then came Alzheimer’s.

Attitude lies somewhere between emotion and logic. It’s that curious mix of optimism and determination that enables you to maintain a positive outlook and to continue plodding in the face of the most adverse circumstances.

Coach Summitt’s spirit and memory will live on, continuing to touch lives, empower women, and inspire people of all ages. We can honor her life and all the lives lost to Alzheimer’s by boldly continuing to fight this horrific disease. We must be resolute in our determination to #ENDALZ, and we simply cannot stop until the battle is won.

In the coming days and weeks, our hearts and prayers will be with the family, especially son, Tyler, as well as Coach Summitt’s many friends, colleagues, and former players.

Read more about Pat Summitt in this New York Times article and in this press release from UsAgainstAlzheimer’s.

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Marilyn, BA (before Alzheimer's)

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