Monday, March 18, 2013


Like you, I try to avoid paper accumulation. I love having the trash barrel between the mailbox and the garage door and the office paper recycling bin just inside.

Since Pat became eligible for Medicare last spring, however, paper has become the stiff crinkly enemy, massing along the edges of my desk, hiding out in the bunkers of my manila file folders, resupplying, if not actually reproducing, in great heaps all over my office floor. I've filled my Medicare Parts A, B and D files with letters, forms, duplicates of forms and pamphlets that hang out sullenly like POWs smoking cigarettes and plotting escape or mental mayhem. The Agency on Aging and Medicaid file folders, too, hold heaven knows how many sheets of partially read and less than partially comprehensible directives, letters of welcome, and obfuscated applications for the (actually!) six types of Medicaid in the state of New Mexico. There's even a survey that asks me to evaluate a program to which Pat hasn't been accepted.

In my efforts to find low-cost help, I've been engaged in long-term trench warfare to get Pat into a program called, with a Sinatra-in-Spanish flair, Mi Via. I wish. My way would be to conjure up one of those jolly cook/maid/nurse/second mom/best friend characters who used to populate the kitchens of American screwball comedies and sit-coms, apparently celibate, living in and working round the clock for free.

The battle with Pat's paperwork began with reconnaissance more than two and a half years ago--this is a true story. A social worker I know told me that the husband of a friend of hers had something mysteriously called the "D&E Waiver." I had no idea what it was or which agency administrated it, but I learned that it could enable me to hire regular help for Pat without forcing us through the doors of the Salvation Army. However, rumor had it that someone high up in New Mexico's human services department had neglected in 2010 to apply for the federal money that funds the waiver. And, as it's a biannually funded program, that cut out any new recipients for the next two years. When I called the Agency on Aging and Long-Term Services to add Pat's name in October 2010, we were 647th on the wait list.

A few weeks ago, we finally rose to the top due to the wondrous intervention of our Medicaid social worker, God bless her. However, the process of applying for the waiver was daunting at best. I was told that it would take six weeks to get boots on the ground, i.e., care givers in our home who were getting paid by the waiver program. Well, I don't know too many people in the profession who can wait around for six weeks to even begin working under the waiver--they first have to apply for certification--and then another four weeks for their initial paycheck.

Then I discovered that the organization that was actually coordinating Pat's care was not the group I'd signed him up for, but a subcontracting group, and that they didn't do the required initial home visit, but subcontracted it to Goodwill Industries in Santa Fe. AND that neither group actually employed the caregivers. THEY work for, of all places, Xerox Corporation, which has a little check writing gig for the state alongside all its copy machine sales, leasing and repairs.

The Goodwill people finally called, only to let me know that the home visitation would take at least three hours. Have you ever tried to get a severely demented person to do something for three minutes? I told them I didn't think Pat could handle three hours of total strangers examining him and his home. They said it was mandatory. I told them I'd get back to them.

That was five weeks ago. Ultimately, we gave up our place in the Mi Via waiver line. Pat became more and more agitated and unable even to work with his existing caregiver or to tolerate my brief absences from the house. I was certain that he couldn't have strangers coming in to care for him. In short order, it became clear that he would not be able to live at home anymore, even with full-time help. The time had come and gone for that, well before we reached the head of the line for Mi Via.

I haven't gotten any mail from the Area Agency on Aging or Medicaid in a month. I sent in a simple waiver-decline form and the mighty flow of letters dwindled away like the Rio Grande in our current drought. The paper in my office has quieted down, too. Just an uneasy rustling from time to time as I stack it for recycling.

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I welcome comments on the content of this blog, especially stories from other husbands, wives and sweethearts caring for spouses/partners with dementia. It's a hard road and we need to walk with each other along the way. Thanks!