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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Tag Archives: grief

Goodbye 2017: Onward and Upward

01 Monday Jan 2018

Posted by Ann Napoletan in Caregivers, Grieving, Guilt and Regrets, Life After Caregiving, Ruminations, Saying Goodbye

≈ 12 Comments

Tags

2018, alzheimers, caregiving, grief, grieving, life after alzheimers, long distance caregiving, losing the second parent, loss of passion, new year

Years ago, when pondering names for this blog, I chose the tagline “An Alzheimer’s Journey and Beyond.” The tagline stems from the life-altering nature of the Alzheimer’s experience and the fact that a new kind of life exploration continues long after Alzheimer’s ends. This post falls into the “and beyond” category.


As I sit ruminating on 2017, I would have to say I’m happy to put it in the past and begin anew. I can’t find the words to describe the past year in simple, straightforward prose and I suppose that’s appropriate as it wasn’t a simple year in terms of emotional turmoil.

February was the beginning of a steep decline in my dad’s health. He had suffered from heart problems for 25+ years, but what we were seeing was notably different. His CHF was becoming increasingly problematic and between February and June, he was hospitalized at least four times.

Dad’s determination to remain independent until the end made long-distance caregiving exceedingly difficult. Aside from twice-to-thrice weekly visiting nurses ordered by his long-time cardiologist and daily Meals on Wheels (which he loathed and barely ate), he refused any sort of help. And the fact was, he needed assistance.

I made the 7-hr round-trip drive 2-3 weekends per month, but it wasn’t enough to manage all that needed to be done.  I loved my dad dearly, but he wasn’t easy to handle – he was depressed, angry, stubborn as a mule, and no doubt frightened as well; all of that combined could bring out a mean streak that was unpleasant at best. He often lost sight of the fact that I was simply trying to help.

June 2016

In my heart of hearts, I think he knew the time was coming when he would need full-time care, and rather than face the prospect of leaving the house he loved, he gave up. He suffered a neurologic event of some sort at the end of May and never came out of that. By the time we arrived, I barely recognized him. Thankfully, he was able to hear and understand us that day, responding with a blink, squeeze of a hand, gesture, or a few hard to understand words, but he never opened his eyes.

After consulting with the most wonderful palliative care doc, we agreed to call in hospice. Dad was transferred to a beautiful hospice facility, where we sat at his side for nine days. He passed away peacefully on June 3. He would have been 84 on June 12. I still find it hard to believe that he’s gone, and it’s such an odd feeling to realize you have no living parents.

Between June and November, there was estate paperwork, cleaning out the house I’d grown up in, hiring contractors, and ultimately selling the property. We closed in early November and I brought home the last boxes of Dad’s belongings the week before Thanksgiving. Over a month later, the boxes are still sitting in my living room untouched.

I’m still working through grief and regrets. Those days in hospice with Dad also brought back vivid memories of my mom’s final days. If I learned anything from my her passing, it was that grieving is complicated. It takes time, it can’t be forced, and it sneaks up on you when you least expect it.

So, all of that, combined with residual grief from some things that occurred in 2016, a demanding, high-stress year at work, and the general state of the world, has left me feeling adrift. I seem to have lost my passion and I miss it, but I’m not sure how to get it back. I’m hoping time is the answer. My life is rich with blessings and I know that this, too, shall pass.

Grief is in two parts. The first is loss. The second is the remaking of life. ~Anne Roiphe

The thought of a new year brings hope. This will be the first year, since age 19, that I haven’t been a caregiver in some capacity. Now, at 52, with a family history of both Alzheimer’s and heart disease, it’s time to develop some healthy habits. I want to focus on improved diet, yoga, and meditation, along with making a sincere effort to reduce work-related stress. In short, during 2018, I hope to find a place of balance along with the passion that has slipped away over the past 12 months.

May the coming year bring you a bounty of blessings, and may it bring researchers that much closer to finding the key to unlock the mystery of Alzheimer’s. I’m grateful for you and I thank you for continuing to follow The Long and Winding Road.

With gratitude,
Ann

 

 

 

 

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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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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

≈ 13 Comments

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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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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