Tuesday, February 19, 2013

An Open Letter to the President.

Dear President and Mrs. Obama;

I watched the President’s State of the Union speech last week with some hope, some concern for our nation, and, admittedly, a little bit of cynicism.  You spoke passionately of where the country was going, and how far we’d come, describing the steps that needed to be taken to improve our economy, to better educate our children, assist the healthcare and Medicare systems, and improve the environment.  You spoke movingly of special groups of Americans who needed our attention; those who had been disenfranchised, those who had lost loved ones to violence, those who suffered from joblessness and poverty.  Most groups I could think of were covered by you, and deservedly so, except for one; caregivers.  I guess there’s a reason we’re called the “Hidden Population” – you don’t seem to know about us, and you’re not the only one.

There are an estimated 4 million people in the US alone living with advanced stage Alzheimer’s, the biggest, but by far not the only, dementia-related dysfunction.  By 2050, there will be 14 million sufferers in America.  By 2025, 34 million people globally will be diagnosed with Alzheimer’s alone.  More than 80% of unpaid caregivers are women, and two-thirds of caregivers work outside the home.  Unpaid family caregiving saves our government millions of dollars in health care annually, and people are filling this role out of love or duty, without much public support.  These are not my statistics; these are your government’s figures, and yet, Alzheimer’s and the aging of our population received only a token mention during your speech.

When was the last time you looked on Facebook and took note of the many groups formed by average people trying to give sufferer and caregivers alike a voice and a place to speak about the terrible things they are going through?  There are almost more than I can count.  Have you looked at the blogosphere lately?  It’s filled up with sites created by ordinary people doing extraordinary things; sending their voices out into the darkness, trying to make sense of the senseless and sharing support. Lacking much official support, caregivers are forging their own; but it’s not enough.

You spoke of defending against cyber-attacks, and how nobody wanted to look back after a few years and say we should have done something.  Dementia, in all it’s forms, is poised to strike the country like a tsunami in the coming years, and there are few strategies in place to deal with it. You spoke of creating jobs in manufacturing and the computer sciences, worthy careers, to be sure, but what about finding and training more professional caregivers to meet the growing number of aging baby boomers you also mentioned, who will flood the nursing and assisted living systems, stressing inadequate resources.  We are approaching an emergency situation.

I am one of the lucky ones; my father had enough money to help me comfortably arrange for his care.  This is not the case for most caregivers, so many of whom have nothing but the sinking ship of Medicaid to clamber on to.  I hear heart-breaking stories every day in my work as a counselor/caregiver advocate, and I see that all our society has done so far is plaster band-aids on a gaping wound.  I implore you and the First Lady to direct attention to caregivers; they need our support.  Increase awareness about what they are struggling with, look honestly at the situation, include us in a speech – believe me, we could use the publicity.  I know we’re not a flashy issue that lends itself to media attention, but just go meet a caregiver, and learn about these ordinary individuals, being asked to do the extraordinary.  We’re not flashy, but we do vote.

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