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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Tag Archives: alzheimers caregiving

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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Call to Action: Online Caregiver Survey for Research Study

06 Sunday Nov 2016

Posted by Ann Napoletan in Advocacy and Awareness, Call to Action, Caregivers, Research

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Tags

alzheimers, alzheimers caregiver research, alzheimers caregiving, alzheimers research, dementia

survey

Friends, please take a look at this opportunity from Xavier University. I would encourage you to participate if you qualify and are able. Research regarding caregivers is so critical.

__

You are invited to take part in a research study regarding dementia caregivers. This study is being led by Amy Olzmann, M.A. and Amy Houston, M.A., and supervised by John Barrett, Ph.D. at Xavier University.

The study involves answering a series of online questionnaires designed to increase our understanding of caregiving. We are inviting participants (age 18 and older) who are primary caregivers for friends or family members with dementia to complete an online survey. Caregiver participants must be able to read English. It is anticipated that this survey will take approximately 30 minutes of your time to complete. The survey is completely anonymous.

However, if you would like to enter a drawing for one of sixteen $25 Amazon gift cards as thanks for participating, you will be asked to enter your email address at the end of the survey. Email addresses will be collected on a separate survey, and your name will not be linked with your survey responses.

In addition, we request that you forward/share the survey link with other individuals caring for friends or family members with dementia who may wish to participate in this study so that they may have the opportunity to assist us in gathering information about dementia caregiving.

Please click on the following link if you are interested in learning more about the research study: http://tinyurl.com/z4ukpcw

Amy Olzmann, M.A.
Email: olzmanna@xavier.edu

Amy Houston, M.A.
Email: houstona1@xavier.edu

 

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Younger Onset Alzheimers: The Epitome of Unfair

28 Monday Mar 2016

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

≈ 3 Comments

Tags

alzheimers, alzheimers caregiving, alzheimers end of life, alzheimers grief, dementia, missing jim, younger onset alzheimers

alzheimers-garner-foundation

Photo Credit: The Garner Foundation

I know we can all agree there is plenty in life that’s unfair, but at the moment one specific example is on my heart.

Not that long ago, Karen & Jim Garner and their children were just like any other family. However, all of that changed when Jim was diagnosed with Younger Onset Alzheimer’s Disease at age 48. Jim had a long successful career in the Air Force, and pictures from just a few years ago show a strong, handsome, athletic husband and father of two young children.

This weekend, Karen added a new post to her blog, Missing Jim. If you follow the blog you know that Karen writes with a raw, pull-no-punches honesty. I have such respect for this woman’s courage and grace. The blog is a story of true love, unexpected moments of joy, the kind of loneliness only this disease can exert on a wife, and a sense of loss that defies all logic.

In February, Jim began receiving hospice care. His decline has been swift. As I read Karen’s latest post, it reminded me of my own internal struggle in those last days with Mom. On one hand, wanting to let her go to a peaceful place where she would be whole again, yet on the other hand wanting so badly to hang on to her forever. I can’t imagine being a 46-year-old woman facing that clash of emotions as she watches her husband near the end at the hand of this horrid disease.

Please read and share Karen’s March 27th post titled, I Got That Dreaded Call. Keep this family in your prayers, and share their story. Help Karen educate the masses.

“I want people to see what Alzheimer’s Disease does to a wonderful human being. I want to break the misconception that Alzheimer’s Disease is just old people forgetting someone’s name or getting lost. I want to erase the stereotypical patient idea.”  ~Karen Garner

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The Long and Winding Road

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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