Alzheimer's Caregivers: Today's Heroes

Eric J. Hall Health Guide
  • Recently, the Alzheimer's Foundation of America's Quilt to Remember was in Chicago as part of its 2007 national tour.  I was on site to participate in the opening ceremonies.  We laid out the Quilt to Remember on the ground in Grant Park—a task that often takes a few hours given the massive size of the panels and the enormous number of them (more than 100 at that time). People immediately started flowing by to experience it.  One family strikes my memory.  They had created and submitted a quilt panel, and had traveled to see it laid out here. They kneeled before it, and were in tears.  It was heartbreaking. 

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    I walked over to introduce myself, and we spent some time discussing their experience of Alzheimer's disease with their mom.  "She was a wonderful woman," they pointed out repeatedly.  Apparently she had been sick for some time.  They remember back at the beginning.  Everyone knew something was wrong.  Mom was simply not her normal self.  But they never asked and seldom brought it up.  "Mom was the head of our family.  She was always in control.  She took care of all of us,” they emphasized.  It was only after some circumstances made it impossible for the family to gloss over the problem any longer that they brought their mother to a doctor to check it out.  

     

    The doctor made the diagnosis and prescribed treatment.  During the next six months, family members tried to provide the amazing quality of care to their mother as she had done so often for them.  What they realized—again after much time had passed—was that the disease brought with it unique issues, special needs and a specific kind of care. They simply did not know enough. 

     

    Education became their objective.  The family learned by attending conferences, and reading article after article in magazines and on the Web in order to grasp the skills necessary to care for their mom. 

     

    Was it better late than never? Of course. But the family made it clear: "We should have reached out for information sooner…We should have pressed the issue of her memory loss with our mother,” they told me.

     

    For those of us in the Alzheimer's world, this story is not unique.  In fact, we hear hundreds of similar stories each week. It’s great when families eventually reach out for help—when they get past the denial, the stigma, the fear or sometimes even the love that holds them back.

     

    But what concerns me most are those who, despite their enormous love for their family member, wait much too long and the countless others who never seek help at all. It concerns me because there are knowledgeable professionals, tons of information and myriad community support services that can help caregivers deal with the daily challenges of this disease. These resources are right at everyone’s fingertips. Simply, families just need to reach out.

     

    Meeting this particular family also highlighted another point: the desire of a family to do the best for their loved one.  Caregivers are incredible people.  They are willing to do whatever it takes,  because of their love, to care for their family member, friend or significant other.  The love of a caregiver is truly heroic.  Their lives are examples for all of us and are a witness to the power of compassion and the awesomeness of love.  I hope we can all learn from their journey...perhaps it will make ours a little easier.

Published On: July 02, 2007