Monday, March 25, 2013

The Road from Home

It can be terribly bumpy, this road. A couple of months ago, there were still pleasant nights, happy mornings. Then, in the space of a few weeks, Pat lapsed into longer and longer sessions of not knowing where he was or who I was. He became increasingly agitated, combative and violent toward me and toward friends and caregivers. He once was a man who always knew how to express his strong temper without violence, to be moderate, kind and fair. What triggered this major step down?

Did he sense how difficult it had become for me to spend all my time, day and night, in caregiving? How exhausted I was, how worried about money, how inwardly resentful at times? Did he somehow, underneath the disease. make a choice to act out so that I would have to hospitalize him again, so that I could catch a break? I think that may be the case, because he calmed down right away after he was admitted. It would be like him to do something, in whatever way possible, so that I wouldn't have to sacrifice too much.

But, as I knew it would be, the hospital environment has been very hard on him. He sleeps on average about three hours a night. He's often so weary that he can barely speak; his blue eyes, if they open at all, register mostly confusion. But he does recognize me and Cousin Molly who brings cookies and is so kind. The nurses and techs seem to think Molly and I are caregiving wizards. Actually, it's just that we're familiar to Pat, and that we take the time, however much time it takes, to help him eat or get ready for bed. We walk with him when he can only walk, we read to him or tell stories of our childhood when he's able to sit and listen. Sometimes we can make him laugh. Still, he often tells us earnestly that he needs to "go home."

Where is home now? Pat lives on a hospital ward with strangers, where family can only visit certain hours. I sleep on Molly's aerobed two nights at a time so I can see him three afternoons and two evenings in a row. Then I drive back to Santa Fe, through the wild spring winds that sweep gales of dust up the arroyos. I come home to a chilly house that's slowly getting packed up and emptied out. A year ago, we were a family still--my husband, our dog and me--in our warm house where a fire burned on the clay hearth. Now I'm by myself in this space that feels like a theater after the play ends. Ticket stubs to sweep out, footprints to mop from the stage floor.

I make time almost every day to cry. I recommend it to all caregivers in the late stage of any long-term illness. This is grief just as surely as it will be when your loved one has died. It's just that you are hit by shards of loss every day. A thought will suddenly hook your attention--some event or thing that you will never again share with your beloved--a trip to the beach, a holiday at home, the bed you bought together. If I'm in the house alone, I just collapse and wail and let God hold me. If I'm in the car, I pull over into a deserted parking lot. If I'm at the hospital, I duck into a restroom. I never know when the storm will hit, but I think it's important to honor pain when it comes, not to shunt it aside and try to soldier on.

It doesn't matter if the nurses see me red-eyed. I'm sure some of them cry at times--working with older psychiatric patients is grueling and heart-breaking. I learned this week that one of the med techs was a political prisoner during the Pinochet regime in Chile. How must that experience inform the care she gives to people like Pat, imprisoned by their brains through no fault of their own?

On the ward, Pat shares a room with a man who was probably self-centered and annoying even before he developed dementia and seizure disorder. He follows us around, talking loudly and getting angry with me if I don't pay attention to him. Another woman clutches at me, crying and insisting that I do something for her that I can't understand. She, too, becomes enraged if I turn away to help Pat. I have to remember that they are living in an unfathomable loneliness, that anger may be the only language they have to tell their stories, to ask for love.

Why are they here? Is this some kind of purgatory for past misdeeds? Of course not. The geriatric ward, unfortunately, is a place where older mentally disabled people may get dumped by desperate or uncaring relatives. A nurse told me that many people linger in the hospital for months because they have no one to advocate for them and there are too few publicly funded beds in local nursing homes to serve all the wards of the state.

She called me a "good wife" because I hadn't abandoned Pat. It made me sad for the ones who are left to wander this hard road alone, with no one to retrieve their stories when they lose them on the way. Think of them, pray for them when you have a moment, because we're walking the long way home together, all of us.

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.