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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Ruminations

Missing Mom…

05 Saturday Oct 2013

Posted by Ann Napoletan in Books, Giveaways, Grieving, Life After Caregiving, Mom, Ruminations

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alzheimers, dementia, grief, grieving

photoIt made me happy to put two copies of Why Did Grandma Put Her Underwear in the Refrigerator, by Max Wallack & Carolyn Given, in the mail this evening. I hope my winners, Becky and Cyndy, enjoy their books. Thanks to Max for sending me a second copy for the giveaway!

I’ll be honest, I’m struggling a bit at the moment and I can’t entirely put my finger on it. I think some of it has to do with dissatisfaction/frustration in one particular area of my life, but it’s more than that.

I’ve been disenchanted, uninspired, and on the verge of (and in) tears all week. I owe articles and responses and reviews to people, and I just haven’t had the emotional or creative wherewithal to do any of it. Even the things that usually excite and inspire me are leaving me feeling flat right now.

Tomorrow is my birthday; next Saturday is my mom’s. The first without her. Although she really hadn’t been “here” for quite a long time, just being able to sit with her, see her smile, hold her hand – I realize now what a priceless gift that was… I would trade all of my worldly possessions for just five minutes with her, although I can’t imagine having to say goodbye again when that time came.

Sometimes I don’t think I’ve come that far at all in the almost 10 months since her passing. Right now, it feels so fresh; I feel as though I could cry enough tears to fill the ocean. I know she wouldn’t want me to be sad, so for her, I try… but it’s hard as hell sometimes. I #%!$ing hate Alzheimer’s with every fiber of my being…

 

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The Face of Alzheimer’s: Michael Ellenbogen

03 Thursday Oct 2013

Posted by Ann Napoletan in Advocacy and Awareness, Books, Early Onset, Face of Alzheimer's, Helpful Resources, Mom, Ruminations, The Early Years

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alzheimer's books, alzheimers, alzheimers story, dementia, early onset alzheimers

bookI recently read Michael Ellenbogen’s book From the Corner Office to Alzheimer’s and found this poignant account of living with the disease to be touching, heartbreaking, and eye-opening to say the least.

Ellenbogen, a former IT exec and self-proclaimed workaholic, was diagnosed with Early Onset AD in 2008. At that time, he was just 49-years-old and had noticed his earliest symptoms ten years earlier – before his 40th birthday. His forthright style helps us to understand what it’s like – from noticing the initial subtle changes, to trying to keep the wheels on the bus, so to speak, and live a “normal” life, to the search for a diagnosis, and beyond.

Yesterday, Ellenbogen wrote an enlightening post on katiecouric.com. When you have a few moments, pop over there and read My Name is Michael, and I Am Living with Alzheimer’s.

Stories like this not only serve to help crush the stereotype and stigma surrounding dementia, but they allow us – the family members, friends, and caregivers – to understand what it feels like to be that person.

In those early years with my mom, we didn’t know what was happening, and even once we did, we tended not to talk about it to avoid upsetting her. Maybe we thought if we buried our heads in the sand, it would go away. We spent years living in denial. I so wish we’d handled it differently.

Courageous people like Michael Ellenbogen who are willing to share their story are helping today’s families see that it’s okay to talk about it. In fact, it’s really only through talking that we have any chance of solving the problem…

Learn more about Michael by visiting The Michael Ellenbogen Movement on the web.

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The What, Why, and How of Snoezelen Therapy

26 Thursday Sep 2013

Posted by Ann Napoletan in Behaviors, Helpful Resources, Mom, Music and Art, Pharma, Ruminations, Treatments and Therapies

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alzheimer's therapy, alzheimers, dementia, multi-sensory environments, snoezelen

Snoezelen RoomFor some reason, when I see the word Snoezelen, I think one of my favorite Sesame Street characters, the adorable Mr. Snuffleupagus. Of course, the two aren’t even remotely related, but for some reason I can’t get the image of that adorable woolly mammoth out of my head!

Why Snoezelen?

The term itself is derived from the Dutch words “snuffelen” (sniffing) and “doezelen” (dozing). Snoezelen originated in the Netherlands as a way compensate for sensory deprivation in the profoundly disabled. One study suggests that the average healthy person touches up to 300 different surfaces every 30 minutes, whereas a person with a severe disability will often touch less than ten surfaces in the same amount of time.

In the 1960’s and 1970’s, researchers found that in the absence of adequate stimulation, the brain begins to hallucinate to make up for what’s missing. Subsequent studies, including one led by Dr. Jason A. Staal, at Beth Israel Medical Center in NYC, have proven that augmenting the environment with various sensory stimuli can actually reduce agitation, depression, and apathy in patients.

How Does It Work?

Snoezelen RoomIn Snoezelen therapy, multi-sensory environments are created using visual, auditory, tactile, and aromatherapy stimulation. The concept has been successful with people of all ages, and in this safe, comfortable setting, Alzheimer’s and dementia patients have found peace and solace. The “treatment” can elicit calmness, an overall feeling of wellbeing, and a sense of security. In some cases, memories are awakened through the process.

Depending on how they are used, light, sound, and scents can evoke a variety of responses, and there is a risk of overstimulation. For this reason, when creating a “Snoezelen room,” it’s important to tailor the setting to each individual’s unique needs. Ideally, patients should be presented with a variety of options and have the freedom to choose the sensory experiences they find most pleasing.

Case Study

In a 2011 interview, Angela Green of Christian Care Centers in Mesquite, Texas, discussed the success they’ve had with Snoezelen rooms in their Alzheimer’s/Memory Care unit.

“The agitated individual that’s not able to communicate verbally [and] that has a lot of frustration from the stimulation they’re receiving will go into the Snoezelen room and find peace and to relax and enjoyment… We found that the colors and the sound and the motion and the touch that they’re able to experience, all of those things involve all of their senses and give them a complete enjoyment of their surroundings and something to interact with. It’s not uncommon to see one laughing or dancing when they’re in the environment, and even having good memory recall to the point that they can answer questions.”

Snoezelen RoomSnoezelen and Alzheimer’s

I don’t know about you, but this is something I would have jumped at the opportunity to try with my mom. The obvious question: Why aren’t we hearing more about alternative treatments like this here in the United States? We all agree that research is critical, but we also owe the best quality of life possible to those who are living with Alzheimer’s right now, don’t we??

I could rattle off the litany drugs that Mom’s neurologist prescribed during the course of her illness – everything from citalopram for depression to heavy-duty psych drugs like Risperidone, Divalproex (Depakote), Olanzapine (Zyprexa), and Lorazepam (Ativan)… and the list goes on.

The last couple of years, the psychotropic drugs rarely eased her agony and terror. I have to wonder if something like Snoezelen therapy could have helped to calm and relax her during those horrible spells. Mom is gone now, so I’ll never know – but it’s certainly something other families should have the option of considering…

For more information on Snoezelen and Multi-Sensory Environments, consider visiting these sites:

  • American Association of Multi-Sensory Environments
  • International Snoezelen Association
  • Stepping Stones
  • WorldWideSnoezelen.com

Photo credit: WorldWideSnoezelen.com

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Marilyn, BA (before Alzheimer's)

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