Alzheimer's and Caregiving -- A Daughter's Story of Love

BlogHer Original Post

This week I had the great opportunity to talk with author Mary Ellen Geist.  Several years ago Mary Ellen was described by the New York Times as the:

Archetypal career woman, a radio news anchor with a six-figure salary and a suitcase always packed for the next adventure, whether a third-world coup, a weekend of wine tasting or a job in a bigger market.

But as she saw the growing toll that her father's decline from Alzheimer's was taking on both of her parents, Mary Ellen climbed down from a great spot on the ladder of success and headed back home to Michigan to become a family caregiver.  Over the last several years as she cared for her father, Woody, she also found time to write about living with the sorrow of losing a loved one bit by bit to Alzheimer's.  Mary Ellen's struggle to salvage precious time with her dad is now the subject of her wonderful new book Measure of the Heart:  A Father's Alzheimer's, A Daughter's Return.

I bought the book last week and confess that it's already dog-eared and tear-stained because Mary Ellen's story hit me up close and personal.  My 89-year old mother has had dementia for 20 years.  The neurologists can't seem to agree on an exact diagnosis but Mom's memory and cognitive abilities have severely declined to the point where she now needs round-the-clock care in a secured assisted living setting.  That means a locked facility where she can't wander away. 

What's so sad is that I often forget what Mom was like before she went into her "cave" which is how I rationalize her disease to myself.  When she first started to experience symptoms, it's like she went into a cave where no one else could enter.  In the early stages, she ventured outside the cave, interacted with people and the environment until some call we couldn't hear beckoned her back inside. 

As the dementia progresses, people like Mom and Mary Ellen's dad find themselves further and further inside the cave.  It takes increasingly more effort to approach the opening let alone step outside into the world where others wait - with hope -- to see a glimpse of the way they once were.  And then one day, they don't even see the opening and the cave becomes - well, everything and nothing.  That's where my mother is now.

So what are the chances that Alzheimer's will hit close to your family.  Brenda Avadian of the Caregiver's Voice, a resource site and a blog for caregivers gives the grim statistics:

During the past decade, we've witnessed a 25% increase in Alzheimer's. Today, reports estimate that 5,000,000 Americans live with this disease, up from 4,000,000 a decade earlier. Projecting these numbers forward, we're looking at 6,250,000 Americans being diagnosed with Alzheimer's by 2017 ... unless there's a cure.

As a member of the Baby Boom generation, I cannot imagine a more active group of people being stricken with this disease. Yet, this figure will reach epidemic proportions. Each of us will be affected--as a caregiver, as a family member, or even, as one who receives the diagnosis.

As the need for caregivers increases, family members like Mary Ellen will continue to make huge compromises in their personal lives and finances to provide the care needed for loved ones with Alzheimer's and other diseases of aging.  According to AARP, this economic impact of family caregiving reached $350 billion in 2006. 

Mary Ellen will share insights on the life and lessons of a family caregiver in the upcoming podcast interview she's agreed to do for BlogHer readers with yours truly.  And she wants to hear from you.

So bring your questions on Alzheimer's and caregiving in reply to this post.  I'll include them as part of my interview with Mary Ellen later this month.  As I see it, it's a way for us all to benefit from our collective experience and wisdom on this difficult part of midlife.   

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