From: unk...@googlegroups.com   
      
   Alzheimer's: the Disease Americans Fear Most   
   POSTED 5:00 AM, NOVEMBER 3, 2014, BY LOIS MELKONIAN, UPDATED AT 09:22AM,   
   NOVEMBER 3, 2014   
      
      
   With medical intervention, you can battle cancer and beat it, you can face   
   diabetes and live with daily treatments, you can change your life and defeat   
   heart disease, you can recover from a stroke or a heart attack. Alzheimer's   
   disease is another story.     
   There is no cure.  Alzheimer's is 100% fatal.   
      
   No surprise a Marist poll of 1,200 people conducted for Home Instead Senior   
   Care finds Americans are afraid of  developing Alzheimer's disease more than   
   any other major life threatening disease, including cancer, stroke, heart   
   disease and diabetes.   
      
   "Credit: alz.org"   
   "Credit: alz.org"   
   November is National Alzheimer's Disease Awareness Month.  When President   
   Ronald Reagan made the designation back in 1983, who would have known this   
   disease  would take over his life and now affect 5.4 million people?   This is   
   also National Caregiver    
   Month, and it's estimated there are more than 15 million Alzheimer's and   
   Dementia caregivers.   
      
   I became an accidental caregiver just over two years ago.  Life wasn't   
   'supposed' to be this way, but then Alzheimer's wasn't 'supposed' to throttle   
   my father and change everything about him in a matter of weeks, months and   
   years.  The disease spread    
   through his brain, with lapses in his memory, his confusion in following a   
   conversation, faded recognition of individuals, and an inability to make   
   decisions.   
    dadstairlift   
   As the disease progressed he wandered away from home,  he would talk to   
   imaginary people and then he lost the ability to control many of his basic   
   functions.  I still remember him standing on the landing, staring down, not   
   moving.  He had forgotten how    
   to walk down the stairs. So we installed a stair lift.   
      
   When my father was diagnosed with Alzheimer's our family  decided to learn as   
   much about this disease as possible. Realizing my father's needs were beyond   
   my skill level, I took a class through the Alzheimer's Association in   
   Colorado.  For six weeks,    
   facilitator J Jordan,  walked our class through the stages of the disease, how   
   to "care for our lovies," and how to take care of ourselves.  "Every person   
   you meet with Alzheimer's is one person with Alzheimer's," Jordan would remind   
   us, because while    
   there are benchmarks and patterns, this disease manifests differently in every   
   person.   
      
   The biggest early breakthrough with my father came through one of Jordan's   
   instructions,  "No questions. Stop asking questions of your loved one, it only   
   muddies the water.  Help them make choices, don't ask questions."  Because of   
   the change in brain    
   activity in a person with Alzheimer's, the simple act of posing a question can   
   send them into a challenging place, causing confusion and frustration.  So,   
   instead of asking my dad whether he wanted juice or water I would place a   
   glass of juice in front    
   of him.  If he really wanted water, he would let me know, and he did!   
      
   At one point, Jordan encouraged us to imagine ourselves in a car with 10   
   screaming children, all demanding something different, and it's our job to   
   drive them somewhere.  That, she says, is often what our loved ones with   
   Alzheimer's experience. Because    
   of the damage with the tangles and plaques in their brain, the connections are   
   no longer taking place and they can't make sense of everything that's   
   clamoring for their attention.  It's a war inside their head.  Our job is to   
   make them feel safe and    
   secure.  Period.  My mother has been by his side 24/7 and we enlisted the help   
   of a nurse who spends several hours in our home every day to help manage life.   
      
   Early on in the disease, my father was able to help as we built raised garden   
   beds to grow alldadwatering sorts of vegetables.  But my joy as we waited for   
   the cauliflower to form was thwarted after reading an article in Bloomberg   
   Businessweek by Peter    
   Coy,  "Alzheimer's: The Costliest Killer,"  where he describes "a brain   
   destroyed by Alzheimer's disease looks like a shrunken, rotting cauliflower."    
   That image, of the destruction going on inside my dad's head, has never left   
   me.   
      
   Coy's piece highlights the dreadfully low amount of research funds dedicated   
   to Alzheimer's, as he discusses a RAND Corporation study that finds "treating   
   dementia of all kinds costs more than heart disease or cancer, more than   
   150-billion dollars a year    
   in the US, including the value of informal care."  That informal care is what   
   millions of caregivers are doing right now, as I write.   
   "Credit:  New England Journal of Medicine"   
   "Credit: New England Journal of Medicine"   
   It's clear there will be no medical breakthroughs unless lawmakers and   
   researchers decide to make Alzheimer's a priority.  Having lived so much of my   
   life in San Francisco, I can't help thinking of Alzheimer's as the new AIDS.    
   I watched as too many good    
   friends lost their lives battling HIV/AIDS, because early on, there were no   
   treatments that could save them. Granted, there is absolutely NO link between   
   these diseases, except in the way they seem to be viewed from the outside.  In   
   the '80s, getting    
   attention and funding for AIDS research seemed insurmountable were it not for   
   the tireless work of advocacy groups and finally a breakthrough with lawmakers   
   and researchers that totally changed how AIDS is treated and managed in the US   
   and around the    
   world.  The same must happen with Alzheimer's.   
      
   "Credit:  alzheimers.net"   
   "Credit: alzheimers.net"   
   Comedian Seth Rogen is among those working to inspire change and raise   
   awareness of Alzheimer's disease among the millennial generation with Hilarity   
   for Charity.  Says Rogen, "the situation is so dire that it caused me, a lazy,   
   self-involved, generally    
   self-medicated manchild to start an entire charity organization.   
      
   Two months ago, my father fell and broke his hip in the one place we thought   
   he was safe, his bedroom.  One week later he died.  Because of our four year   
   journey with Alzheimer's, we did get 'a long goodbye.'   
      
   But that's not the end of the story because every 69 seconds someone in the   
   United States develops Alzheimer's.   
      
   If your loved one is now among those with Alzheimer's here are some incredible   
   resources that are helping me live through it:   
      
     The Alzheimer's Association in Colorado   
      
   [continued in next message]   
      
   --- SoupGate-Win32 v1.05   
    * Origin: you cannot sedate... all the things you hate (1:229/2)