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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Smiles

Joyful Moments in Memory Care

25 Saturday Apr 2015

Posted by Ann Napoletan in Advocacy and Awareness, Face of Alzheimer's, Inspiration, Life After Caregiving, Mom, Ruminations, Smiles, Volunteering

≈ 4 Comments

Tags

alzheimers, alzheimers moments of joy, alzheimers volunteer, dementia, memory care

Volunteering with Alzheimer’s patients is something I’ve thought about doing since my mom died at the end of 2012, but part of me felt apprehensive about it. Would it hit too close to home? Would my emotions get the best of me? Would it just be too painful? Was it too soon? I don’t think the grief ever really ends; it just changes with time – but it’s ever present.

All valid concerns under the circumstances, but it had been nearly 2 ½ years. Quite frankly, how could I know whether or not I was ready unless I put myself out there? I would either be fine – or I wouldn’t, but all the pondering in the world wasn’t going to answer that question.

The First Step

Last week, I had my orientation and it went well. I left the building feeling good about the community and the staff members I’d met that evening. The 15 minutes spent in the memory care unit bolstered my confidence in the decision to work with dementia patients. So many of those sweet faces reminded me of people I’d met in Mom’s last four years of life – people I had fallen in love with.

Alzheimer’s may have changed the LOVE that you share, but it can’t ever, will never, have the power to ever completely erase it.   -Mara Botonis

Over the ensuing days, I found myself feeling excited, but also a bit uneasy. Just about anything unfamiliar is accompanied by some level of trepidation, and this was no different. Of course, the fact that I came out of the womb worrying probably didn’t help, but what’s life if you don’t step out of your comfort zone every now and then, right?

The Day Arrives

Throughout the day of my first shift, my mind wandered to thoughts of the coming evening and how things would go. Finally, the workday ended, and it was time to head over to the community where I would be volunteering. Rush hour traffic gave me some time to organize my thoughts before I arrived, and I was glad of that.

I signed in and made my way to Memory Care, where I took a deep breath, punched in the security access code, and walked into a brand new experience. An experience, I must say, that was more than I could have hoped for.

The residents were finishing dinner and gradually moving over to the common area. It all felt a bit awkward initially as I didn’t know any names and I was still trying to get a sense of the evening routine. With each passing moment, I found myself feeling more and more at ease and it wasn’t long before I knew for certain I was just exactly where I was meant to be.

Memories of Mom

Moments of joy with Mom at Eason House

Over the course of the evening, I spent time with two women in particular who reminded me very much of mom at various stages of her illness. The moments where similarities came forth made my heart leap inside my chest – flashbacks to treasured moments of joy.

One of the ladies, mostly non-verbal, surprised me several times by perking up and responding to my words. When I complimented her on the bright red blouse she was wearing and told her that red was one of my favorite colors, her eyes met mine and she quietly, but very clearly said, “Me too.” For a moment, her expressionless eyes sparkled.

Creating Moments of Joy – for Them and for Us.

There was no mistaking “Mary’s” contentment as she reached out and took my hand in hers, squeezing tightly. Yet from across the room, her vacant exterior had me fooled into thinking she would be completely unresponsive. It took less than a minute for me to see how wrong I had been.

Later, as she began to smile and laugh, I asked if she was happy. Again looking right into my eyes, she sweetly said, “Very happy.” I can’t even describe how I felt at that moment. There was something about her laugh and the expression in her eyes that reminded me of mom in the late stages.

All of us who love someone with Alzheimer’s know that feeling. A visit that includes a smile, a couple of words clearly spoken, or a few moments of clarity is better than a winning lottery ticket. We wait for those experiences, and when they come, it’s pure magic.

The Gift of Time

I’m told that of 40+ Memory Care residents in this community, only about five have regular visitors. I think that’s astounding, and it’s probably indicative of what’s happening in Alzheimer’s units around the nation.

If you’ve ever thought about volunteering, I urge you to take the next step. The all too common misconception is that dementia patients are merely a shell of a person. People mistakenly think, “They won’t remember my visit, so why bother? “ Nothing could be further from the truth.

While it’s true that they may not remember the details of a visit, I feel confident that the resulting feelings last long after we’ve gone home. Ten or fifteen minutes of loving,  listening, and kind attention can make all the difference in the world to someone who spends so much time alone.

These are beautiful, living, breathing human beings with emotions, spirit, and so much left to give. They deserve to have the best quality of life possible and we hold the keys – all we have to do is meet them in their world rather than expecting them to be fully present in ours. At the end of the day, they give us so much more than we could possibly give them.

I was emotional as I walked out of the building after my first volunteer shift. Indeed it brought back all kinds of memories – good and bad – but my heart was overflowing with love and purpose. I knew that in those couple of hours, I’d made a difference in a few lives. and they had certainly made a difference in mine. Nothing beats that.

To find a volunteer opportunity, reach out to a care community in your area. The need is great, and your query will most likely be met with sincere gratitude. I’d love to hear about your volunteer experiences! Please leave a comment below sharing your story! 

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The Zen of Grown Up Coloring

13 Monday Apr 2015

Posted by Ann Napoletan in Books, Caregiver Burnout, Caregivers, Helpful Resources, Ruminations, Smiles, Tips

≈ 6 Comments

Tags

adult coloring books, caregiver mini respite, caregiver stress, caregiver tips, grown up coloring

colorAs much as the world has come to depend on technology, I sometimes find myself wondering if it’s a blessing or a curse. The benefits gained as a result of computers, smartphones, and tablets are irrefutable; however, these things have also ushered in the era of being connected 24x7x365. Multitasking has practically become an Olympic sport, as it’s done to an increasingly absurd degree.
 

Looking For a Reprieve?

Whether you’re a full-time caregiver or someone who has a full-time career and oversees the care of a loved one, you know what it feels like to be overwhelmed and on the verge of burnout. You yearn for simpler times and wish you could just turn it all off (both figuratively and literally) for a few hours!

My caregiving days are over, but with a full-time-and-then-some career as well as writing, advocacy, and volunteer pursuits on the side, and the usual life/home maintenance activities, things can get dicey. Like most of the rest of the world, I struggle with priorities and balance some days more than others.

Stress has a significant bearing on our overall health and wellness, and caregivers know this better than anyone. So with life moving at such a fast pace, how do we find time for respite when a month in Hawaii or even just a quiet week at home isn’t in the cards?

When all else fails, grab a coloring book!

secretNext time you feel your priorities are askew, your perspective is out of whack, or your brain is just craving a time out, pick up a coloring book!

As unlikely as it sounds, Scottish artist Johanna Basford has sold over 1.4 million copies of her first adult coloring book, Secret Garden. The follow up, Enchanted Forest, appears to be following suit; both books are sold out on Amazon and BN.com!

In this article by Katelyn Murphy, Basford explains that she simply set out to create a coloring book she would enjoy. Noting the carefree nature of children, she wondered if an activity as simple as coloring might bring calm to an otherwise chaotic adult world. To her surprise, thousands of others desperate for a bit of relaxation sans smartphone or other electronic devices decided she was onto something.

Sound interesting? Just Google “Adult Coloring” or do a search on Pinterest and prepare to be amazed! This stress-busting diversion is a piece of cake to get into, requiring very little time and just a few inexpensive materials. Here is a great list of 16 Colouring Books Perfect for Grown-ups, courtesy of BuzzFeed.

My First Grown Up Coloring Experience

In the interest of, ahem, science, I decided I should check this out for myself so I stopped at Barnes & Noble over the weekend and picked up my first “grown up” coloring book. With a dozen or so options to choose from, I selected Peace & Love by Thaneeya McArdle and settled on a set of 12 Rikota Brush Markers (which, by the way, I love!).

IMG_1302The book begins with a few basics on coloring mediums, an explanation of the color wheel, and some beautiful examples of bright designs in rich, vivid, “feel good” tones. Just flipping through the pages had me eager to let my inner artist run wild and sure enough after about an hour I decided that perhaps I’ve been looking for Zen in all the wrong places.

I really enjoyed this time, and focusing on the detailed pattern cleared my mind of its usual pandemonium (no small feat). There’s something about the act of coloring that really is Zen-like, and I think that feeling, combined with the overall sense of joy found in creative pursuits, makes this a great temporary escape from reality.

So to all of my co-workers: should you come by my office tomorrow and find me coloring – worry not! It’s just a few minutes of calm in the midst of a typical frenetic workday, and if you’re extra nice, I might even let you use my markers!

I’d love to hear from others on this topic. What do you think? Have you or would you give coloring a try at this stage in your life? Why or why not? If you’ve already found it to be something you enjoy, tell us about your experience.

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Love and Alzheimer’s

25 Saturday Oct 2014

Posted by Ann Napoletan in Caregivers, Early Onset, Face of Alzheimer's, Guests, Inspiration, Smiles

≈ 4 Comments

Tags

alzheimers, alzheimers inspiration, dementia, early onset alzheimers, love and alzheimers, younger onset alzheimers

I’m so happy to share this Q&A and guest post from Bruce Williams, a fellow Buckeye, Alzheimer’s advocate, and Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias contributor.


How did you and Ann meet and fall in love?

Bruce:  Ann and I are originally from Ohio. Born 8 days apart, we led eerily similar lives. Previously married for 12 years, divorced for four, we found each other in Ft. Lauderdale, FL. Married a mere six weeks after our first date, I can honestly say that we were soulmates from the beginning. Our life together has been one of abiding love, with a healthy dose of passion thrown in.

We had two sayings, “We’ll  never let anyone steal our joy” and, “We never want to look back on our lives and wish we had done ____________”. After the last of her boys were off to college, we moved up to a flying community near Daytona beach where she got her pilot’s license. Always the adventurer, she and a friend entered the Women’s Air Race Classic and came in second.

At what point did you know something was wrong? How was Ann diagnosed?

Bruce: Around five years ago, Ann said she couldn’t taste her food as well. We attributed it to a cold she had a few weeks previously. Her taste, along with her sense of smell, has never been the same since. As far as I can tell, her cognitive problems started about four years ago, if not before.

After several neurological tests, she was diagnosed with Mild Cognitive Impairment.  A personal friend of ours gave her the diagnosis of Alzheimer’s Disease after an MRI in his neurological practice, and the elimination of every other condition.

Why did you start writing? 

Bruce: My emotions ran between denial, fear, hopelessness and rage against a cruel God who, after giving the greatest gift I’ve ever had, was stealing her away.  One brain cell at a time.

Seeking some peace, and wanting to tell her story, I started to write. Putting my thoughts down has helped me understand the disease and open my heart to what unconditional love is all about when faced with the unknown.

 

Bruce was kind enough to share this touching piece about the reality of Alzheimer’s. Feelings of sadness and loss, of course. But a change in perspective allows him to appreciate Ann’s beauty – and their love – in a new light. 

The Diamond

by Bruce Williams

I often get a sadness not unlike mourning. It is not the anguish one feels upon the sudden death of a loved one but a drawn out process that develops a life of its own every time a new event or “milestone” intrudes on our lives.  Morphing into a dark presence that threatens to steal the joy I’ve always had with Ann, I finally break free for a time and realize its way too premature to mourn.

I do feel, however, that small parts of her are lost forever. She’s not the same girl I married 27 years ago but, in view of what she’s going through, I love her more now than I did at any point in our marriage.

As her personality changes ever so subtly, I can liken the experience to a jeweler examining a diamond. Accustomed to viewing it only from the top, One might notice a few flaws. Small pieces of carbon dimming the reflection, and to some critical eyes, reducing its value.  I realize that, while I can’t alter her position, I can change my own perspective.

By peering at this precious gem of a lady from a different angle, I discover a new treasure, never before seen.  Suddenly, those tiny specks are lost in the sheer brilliance of a magnificent cut, polished by the Master Craftsman Himself, for me, our family and all those who love this wonderful woman to enjoy.

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Marilyn, BA (before Alzheimer's)

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