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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Tag Archives: alzheimers grief

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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Mother’s Day 2016

08 Sunday May 2016

Posted by Ann Napoletan in Caregivers, Face of Alzheimer's, Grieving, Holidays, Life After Caregiving, Mom, Mother's Day, Ruminations

≈ 4 Comments

Tags

alzheimers, alzheimers awareness, alzheimers grief, grief and loss, mothers day

I’ve been on edge all week for multiple reasons, one of which was surely the fact that Mother’s Day was everywhere I turned. Tomorrow will be the fourth iteration of this holiday since my mom’s passing. While the cutting pain of fresh loss dulls over time, grief remains. Days pass, then months and years; the pervasive ache is more intense in some moments than others.

While I had my car in for repairs a few nights ago, I lost count of the number of Mother’s Day related images that popped up on the television in the waiting area. Across from me, a mother and daughter engaged in an animated conversion peppered with laughter for 90 minutes. Even after the daughter’s car was ready, the pair remained in their chosen spot enjoying each other’s company. After 10 minutes or so, I’m ashamed to say I wanted to stand up and scream, “YOUR CAR IS READY – YOU CAN GO NOW!”

Sometimes when I see mothers and daughters out shopping together or enjoying lunch on a sunny restaurant patio, I’m enveloped in a flood of emotions. Happy memories frozen in time, yet sadness for what might have been – even a hint of jealousy. I want to be doing those things with my mom. I always envisioned her as a sassy, spunky, vibrant 70-something. But I had it wrong.

mom-me

I’m thankful to know she’s in a better place, reunited with those she loved who were waiting for her on the other side. The thought of her beautiful soul now released from a weary body and muddled mind is comforting to be sure, but it doesn’t make me miss her any less. Still, the notion that her spirit is present in every moment and every beat of my heart is reassuring.

 


mom-crop.Mother’s Day 2016

Dear Mom,

I can hardly believe this will be my fourth Mother’s Day without you. Over the past several months, I’ve realized that in many ways, I miss you now more than ever. Someone suggested it’s because as life moves on, we yearn to share everyday happenings, milestones, joys, and sorrows with that person who was once such a significant part of our world.

I can’t count the number of times I’ve wished I could pick up the phone and talk to you about anything and everything. Trials and tribulations at work, the thrill of life’s most memorable moments, and the sheer joy and pride that comes with being a mom. I miss sharing laughter and tears – and everything in between.

From the mundane to the extraordinary, I just want to sit and share a cup of tea or a few glasses of wine and a long conversation. It’s sad to think of all the things you’ve missed out on, but that realization fuels the fire that burns deep inside me. I’ll continue fighting this battle until we win. Marilyn’s Legacy: A World Without Alzheimer’s – what a day that will be!

With love always,
Ann

smile

Other Mother’s Day Posts
Mother’s Day Reflections: The Journey Continues (05.09.15)
Missing Mama (05.10.14)
And So It Begins: Mother’s Day (04.28.14)
Mother’s Day Memories (05.12.13)
Mother’s Day Blessings (05.12.13)
Dear Mom (05.09.13)
What Is Your Mother’s Legacy – Caregivers.com (05.09.13)
Mother’s Day and Melancholy Moments (05.12.12)

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Jim Garner: Alzheimer’s Angel at age 53

02 Saturday Apr 2016

Posted by Ann Napoletan in Advocacy and Awareness, Early Onset, Face of Alzheimer's, Grieving, Saying Goodbye

≈ 1 Comment

Tags

alzheimers awareness, alzheimers grief, missing jim, younger onset alzheimers

The Long and Winding Road extends our deepest sympathy to Karen, Frances, and Brad Garner. This loss makes us even more determined to fight like hell for an end to this insidious disease.

Jim Garner

                                                                                    Photo Credit: Missing Jim 

 

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Between 2009 and 2015, Marilyn’s Mighty Memory Makers have raised over $22,000 in the fight to #ENDALZ! To all who have supported us, THANK YOU!!

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