A constant fear dogged me as my mother’s health failed. My father, who had gone back to West Texas to sell my parents’ home and pare down their possessions, would call and complain about not feeling well. My response to him was that I was dealing with Mom’s issues (Alzheimer’s and Chronic Obstructive Pulmonary Disease) and was on call for the nursing home; if something happened to him, I couldn’t make the seven hour drive to help him out. After these calls ended, I found myself worrying about what having two members of my family ailing at the same time (and having to assume the caregiving role for both) would do to my life. I had already been part of a “reduction in force” earlier in 2005 (before my mom was diagnosed). I had opted for a graduate assistant position in order to continue school. But how would I keep afloat mentally, financially, emotionally and physically if both parents’ care fell onto my shoulders. Fortunately for me, this fear didn’t come to realization, yet many other caregivers who have loved ones with Alzheimer’s and other long-term debilitating diseases aren’t so lucky.
Kate Michelman wrote an eloquent article entitled “A System from Hell” (which was published in The Nation recently) describing the challenges and decisions that she faced when her husband was diagnosed with Parkinson’s disease in 2002 and her daughter was paralyzed in 2001. Not only did Kate face two daunting medical crises at once, but her family’s finances were quickly depleted. She wrote:
"Seven years of caring for my husband and our daughter, who had no insurance at the time of her accident had all but exhausted our savings. As my husband's condition deteriorated, I was caught in a trap. We needed my income, but the kind of political consulting work that was my forte was incompatible with the demands of caring for him. It was simply not possible for me to be available for him 24/7 and simultaneously to work overtime, traveling for days or weeks on the campaign trail, to bring in the income that would keep us afloat."
Kate has since had to look for work that will fill in the financial gaps in order to cover her husband's care. "It's a dilemma familiar to so many women -- finding work that can pay for care but also leave time for providing it,' she wrote. "The time is drawing near when, job or no job, the expenses will simply be more than we have. I am coming full circle, back to where so many lives begin and end -- and where my career as an activist began: jobless, unsure how to pay the next month's bills, caring for a family that depends on me for survival -- and utterly and deeply determined that something about our country must fundamentally change."
That change may not come, Kate noted, before she has to liquidate most of her assets in order to pay for her husband’s care. “Consequently, a blessing--my husband could live like this for years to come--is also likely to bankrupt us,” she said.
The same could be said for family members of those with Alzheimer’s. This long and painful disease can suck the wind out of any family’s mental, emotional and financial fortitude. And that’s why Congress and President Obama need to address health care now! With the looming epidemic identified in The Alzheimer’s Study Group report, as a nation, we can’t afford to wait any longer to deal with this issue.
Published On: April 22, 2009