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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Helpful Resources

Another Book to Add to the Reading (and Writing) List

05 Tuesday Mar 2013

Posted by Ann Napoletan in Books, Caregivers, Grieving, Helpful Resources, Inspiration, Life After Caregiving, Quotes, Ruminations

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After seeing my recent piece on using writing as therapy, one of my Caregivers readers recommended the book Thinking Anew: Harnessing the Power of Belief by Eugene F. Moynihan Jr. & Richard F. Quis.

I checked it out on Goodreads and was sold at “Writing can be an antibiotic for distorted thinking. It clears the mind, provides access to your subconscious and soothes the soul.”  I’ll be picking up a copy for myself very soon!

 

 

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Interesting Insight on ALZ Drugs

04 Monday Mar 2013

Posted by Ann Napoletan in Helpful Resources, Mom, Pharma, Research

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Should my loved one be taking one of the few Alzheimer’s medications currently approved by the FDA? It’s something that we have all wondered during the course of this journey. What, if anything, are the drugs promising? Is there really a benefit? Is there a down side? At what point should he/she be taken off the drugs?

These are excellent questions, and many are addressed by Carole Larkin, an expert in Alzheimer’s care, in her recent piece on Alzheimer’s Speaks. Click HERE to read more about:

  • the importance of knowing what stage of the disease your loved one is in
  • common drug interactions (both good and bad)
  • financial considerations
  • when it makes sense to stop taking the drugs

According to Larkin, it is currently estimated that the ALZ medications are helping approximately 30% of people who are taking them, while 70% are seeing no benefit. The bottom line is that, like so many aspects of this disease, it’s a guessing game. A gamble.

In our case, getting the meds right was a constant struggle. My mom took Aricept for approximately six years, until she went on hospice in November. Her neurologist didn’t feel strongly one way or the other, and I had heard of cases where patients who stopped taking it experienced a rapid decline. My inclination was to keep her on it; I wasn’t willing to take the chance only to find out I was wrong. Right decision? I have no idea.

That’s the kicker about this disease – no one knows the answers; all we can do is educate ourselves as much as possible so we can make informed decisions. At the end of the day, we do the best we can based on what we know and what our gut tells us…  Not terribly scientific, but until research turns up some more conclusive evidence one way or another, we often find ourselves wedged soundly between a rock and a hard place.

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Stats and Safety Tips

04 Monday Mar 2013

Posted by Ann Napoletan in ALZ Assn - National, Blogging, Caregivers, Caregivers.com, Facts & Figures, Helpful Resources, Safety

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Did you know that:

      • 80% of care provided at home is delivered by family caregivers.
      • In 2011, family members and friends provided an estimated 17.4 billion hours of unpaid care valued at more than $210 billion.
      • 43% of those caring for Alzheimer’s patients reported the physical stress of caregiving was high to very high, and the physical and emotional impact of ALZ and dementia caregiving is estimated to result in $8.7 billion in increased health care costs in the U.S.
      • 65% of caregivers with full or part-time jobs reported having to alter their work schedules or take time off, while 20% have had to take a leave of absence.
      • 43% of those caring for loved ones with ALZ have been providing care for 1 to 4 years; 32% for 5 years or more.

As you can see based on these statistics, caregiving for ALZ and dementia patients is on the rise, and a significant portion of this care is provided in the home. Today on Caregivers, some tips and resources for creating a safe environment for your loved ones at home: In Home Safety: 10 Tips For Caregivers

Source for statistics: http://www.alz.org/downloads/facts_figures_2012.pdf

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Marilyn, BA (before Alzheimer's)

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