Mysteries

(The following was written in July. Pat improved with some medical intervention and by month's end, as the result of other mysteries of love and compassion, we were able to move home to California's Central Coast, where he is, for the moment, in a nice little board-and-care facility. I wanted to post this so that the continuity of our story would stay intact. As soon as I can sort out the tangle of emotions involved in our incredible homecoming, I'll write an update.)

Where does my husband go when a raging and completely irrational being leaps out at me in his body? Over lunch, we were laughing as he made a face on purpose while crunching down on his potato chips. It was a bit of humor that was all Pat. Now, two hours later, he’s making faces full of rage as I try to help him change his clothes, hitting out at me, screaming “Liar! Liar!” And when I say, “It’s Connie. It’s okay,” he looks at me with utter hatred.

It will take multiple doses of sedative to bring him down from this, but right now, I can’t get anywhere near him to administer the medication. I hide it in vanilla ice cream. I hide my fear and grief and rage in the quietest words I can muster. Underneath the words, I am outraged that I am being treated this way. But by whom? A person whose brain is almost gone? A medical system in which hospitals tell me he needs to be in a nursing home and nursing homes tell me he needs to be in a hospital? God who asks me to trust Him in the midst of this horror?

I choose the medical system. Its faceless uncaring, its incredibly stupid and self-contradictory rules, the greed of its executives that places profit before people. Pat should long ago have been admitted to a clean, caring, safe facility that specializes in dementia patients with severe behavior issues. A place where he would get one-on-one care from someone trained and skilled in this kind of nursing. He is not there, not because they don’t exist, because we are out of money. A high-quality care center costs from $70,000 to $100,000 per year. Somehow, you have to go through all the lesser stages of the disease without spending down a huge nest egg so that you can get through the final several months. Or you need the increasingly hard-to-get long-term care insurance that will take a big bite out of your monthly income, unless you are the head of a multi-national bank.

Ah, you say, but what about Medicaid? Well, the trick with Medicaid is finding a place that accepts it and is decent, clean, professional and personal. There are some. They get four or five stars on the Medicare Nursing Home Finder website. And there are many more that get maybe one or two stars. The better centers are usually full. The only way your loved one can get in is if a resident dies. So you develop a rather convoluted prayer: “Lord, let a bed come open. I mean, I don’t want someone to die so that my beloved can have a good place, but, um, you know….”

I’m hoping the soon-to-be-in-place Affordable Care Act will in fact make long-term care affordable. I haven’t heard anything about nursing home or assisted living facilities in all the cannonades of anti-Obamacare verbiage. It would be wonderful if there were to be a mandate, as there is in Oregon and a few other states, that both nursing homes and assisted living centers, the latter being far more likely to take on the challenge of residents like Pat, must accept Medicaid.

In both New Mexico and California, the smaller more individualized care centers are nearly all private-pay. Albuquerque has a Medicaid reimbursement program for assisted living or full-time homecare if the patient has first been in hospital, but not Santa Fe or the state’s other communities. In California, there are 1,500 assisted living beds in a strange mix of rural and urban counties that can be filled by Medi-Cal recipients. Fifteen hundred in a state of thirty-five million. How did that happen and how is it going to help?

The brokenness of our broken medical systems is nowhere plainer than in the world of dementia and long-term care. As I’ve said before, this is primarily because our society considers old people to be disposable and the collapse of the mind and body somehow embarrassing, an inexplicable weakness. Put ’em away somewhere so they don’t infringe on my right to pretend I’m never gonna die. And by the way, don’t take my taxes to care for them.

We live in the deathless society. Public images depict the young, the wildly healthy. We make wars that don’t touch us. We have tidy cremations so there aren’t bodies lying around at funerals. We ask the hospital to call when Grandpa is “gone.” Death is reserved for television, film, news broadcasts, where it is ghastly beyond belief and so, again, doesn’t touch us. Death is a horror show. We, the living, fictionalize it.

When you live with someone who is dying by slow degrees, or when you visit them daily in the care facility, the process of ceasing to live grinds away at you, almost as much as it erodes the person you love. Little losses point up how vast and complex the human brain is, how resilient the body.

 One day, your beloved can’t tie a shoe. It will take awhile, but a few years later, he won’t know what a shoe is. Or will he? He sets it in the fruit bowl, but he also dutifully sits down so you can put it on his foot because he really wants to go for a ride in the car. So does he know the meaning of the shoe or not?

The answer is yes and no. If the caregiver is providing context for the shoe, yes. If the demented person has to figure it out for himself, no. And this is one reason caregivers burn out. Imagine taking every act of the waking day and breaking it down into its smallest comprehensible components. Set the shoe on the ground. Lift the foot. Set the foot in the shoe. Wiggle the toes to position it correctly. Pull the tongue of the shoe up so it doesn’t wrinkle and hurt the foot later. Pull the laces tight. Tie a bow (this involves scores of steps in itself). Say, “There, now you’ve got your shoe on.” Repeat with the other foot. Move on to the jacket, the hat, the sunglasses. Do this for every act the beloved needs to accomplish in the course of a day. Repeat every day for as long as the demented person lives at home.

The mystery is this:  that so many people accept this burden and don’t cast their loved ones away.  Something like 40 million Americans are currently caring for loved ones with some form of dementia. Many others reach out to help those who shoulder the task of care. And many of us who give care have felt the buoying effect of love and prayers, even when we were beyond going on, enabling us to go on.

The thing you find in caregiving is how strong love is. Your love for the beloved, and. when he or she has a moment of clarity, his/hers for you. The love of your friends, your family. The love of total strangers, which I’ll attempt to explore in my next blog. The love of God, or the Heart of the Universe(s), that wraps you round when you really truly can’t go another day and carries you and your beloved through to the next.

This love carries you through the idiocies of the medical system, through the times of terror when your beloved attacks you and you try to imagine what it’s like for him inside his brain, through the grief that accompanies almost every task, and through the loneliness when you consider the future, after all the effort is done, the dying finished, the house empty. Love, you find, will still be there. It makes you tough, sturdy, able to pick up the life you’ve been given to live and move into the light-filled world again.  

Anniversary

Today is our 12th wedding anniversary. I'm so grateful that I found and married my sweet soul mate. He's given me so much and this marriage has transformed my life. I'm glad I didn't know 12 years ago what awaited us. But I don't think it would have changed my mind. I love you, Pat Gannon.

Full Circle

Full circle, from home to hospital, three months of trying to find long-term care placement and now, unexpectedly, Pat is home again. I never thought I'd see him in our house again, lie next to him in bed, greet him in the morning with the time-honored, "Want a cup of coffee?"

It wasn't my idea. I thought we'd find the perfect nursing home or an assisted living situation in California that didn't cost an arm, a leg and a few internal organs. I thought I'd surely have found a job out there by now. I thought we'd have packed him into a motor home and safely delivered him to the place we both long to be. But that isn't what happened.

The day I brought him home, I had no clue how I would do this home caring, even with help. The alternative, however, was letting the psychiatric hospital court (yes, these places have courtrooms on site) remand him to the state hospital in Las Vegas, New Mexico. It would have been okay with me, as I've heard their long-term care ward is pretty good. But when I spoke to the case worker there, she told me that, even though I have medical Power of Attorney, am named in Pat's advanced directive, and am his court-appointed psychiatric guardian, I would have no say in his long-term care placement. Since there weren't any beds currently available at the state hospital's nursing home and he didn't need to be hospitalized any longer, they reserved the right to place him in any nursing home anywhere in the state that would take him.

If you've had experience with Medicaid-funded nursing homes in poverty-stricken states, you know how scary that scenario was.

UNM Geri-Psych had given me less than a day to find out what my legal options were. And, of course, all the senior legal assistance people said they couldn't help, given the brevity of the time frame. So, fearing that the court would side with the hospital, I asked for Pat to be discharged before the hearing took place. Our dear Cousin Molly once again stepped in to help drive Pat to Santa Fe and to get him settled a bit at home. The first night, he slept over 13 hours, as if making up for all the sleepless hospital nights.

Since then, he's been sleeping really well, eating like a racehorse and seemingly enjoying himself walking around our backyard in the warm afternoons. We breakfast, then go for a regular walk around the neighborhood, then he sleeps for a couple of hours in what I think of as the miracle chair, a recliner/rocker we got for a hundred bucks. After that, lunch and then about three hours of a combination of pacing the backyard while talking ceaselessly to himself, listening to me read, whistling along with music and, just occasionally, getting really really angry at nothing. Then dinner, another walk around the neighborhood and a gradual dropping off to sleep. Strangely, it's pretty manageable. I'm writing this while he's doing his afternoon rounds of the house and yard.

I treat it as his job, the work he does while I do mine. It's a way for him to use up energy, to get some sunshine and exercise, and to keep busy in his own way. I wish he could do a bit of actual work with his hands, sit and look at pictures or read a magazine. But my acceptance of what he's able and willing to do makes the day much less stressful.

Part of what has shifted is my attitude. This past year has been a profound spiritual voyage for me. At some point, as the result of an entirely (so I thought) unrelated support group, I began to turn my full attention to God's voice. At first, it was just a prayer and meditation time in the morning. Over the months, it's become a more or less frequent conversation with God, punctuated with moments when I haul myself out of whatever mud hole of fear and worry I've slipped into and step mentally into a circle of light I call the Presence of God. Sometimes I just breathe there for a few moments, calming myself before I resume my day. Other times, I ask questions, make requests, thank God for some tender mercy or beautiful bit of the world.

Why this helps, I don't know. I don't need to know. I find that I am cheerful much more often, that I can hold my tongue when Pat inadvertently says something hurtful, that I can be peaceful and supportive when he wakes me up in the middle of the night in a panic. I am caregiving out of choice now, and stepping out of the stress as often as I can. Even though I have less time to myself than I did when I felt frazzled and overwhelmed, I don't feel divided anymore. Taking care of Pat is my job, not something I have to do in addition to a job or job hunting. And because we went through weeks of trying and failing to find suitable placement for him, I'm fairly certain that it's the job God wants me to do right now. Not forever. Perhaps not even for more than a few more weeks. Just today.

Once of the best things about this time is that I get a "do-over." I get to treat Pat the way I wanted to before, but just couldn't. It's a living amends to him for my anger and impatience and it also is strengthening our relationship. I'd actually have to say love is deeper than it's been in some time. So as we approach our 12th wedding anniversary (July 1), there's a happiness I never expected to know again in this relationship. Full circle, indeed.

Bodies

When people talk about dementia and Alzheimer’s Disease, we speak mostly of brains, that very specific physical site where the damage is done, where speech aphasia takes place, where motor control and social learning is lost. We don’t talk much about the rest of the body. At least, not until the very last stages when the ill person’s inability to swallow, maintain weight and move about signal the rapid muscle wasting that leads to death.

But just like the rest of us, people with dementia inhabit bodies that were once young and strong. The changes in these bodies may frighten the rest of us. A mom, always sturdy and beautiful, becomes a tiny creature the size of a child with translucent hands and a compulsive need to chew her tongue. A brother, once a hulking funny guy with football player shoulders and feet the size of Manhattan becomes soft, pale, somehow absent. A husband, who once could rouse desire with a sly glance, becomes a frail stooped old guy, his lovely muscles vanished under wrinkled skin that hangs like a worn shirt from his bones.

Still, and this is what is both a saving grace and a heartache for a spouse or sweetheart, the present body of the beloved is like a sheer curtain hung over the past. We look beyond what appears at a changeless beauty in the person with whom we’ve shared such important intimate years. There is still desire in the mix of emotions.

What do we do with that longing? How can it endure the spoon feedings, sleepless nights, sponge baths and changing of throwaway diapers? I don’t know, but I know that it does.

On a website for spouses of people with dementia, I found a number of chat threads that are amazing in their searing honesty and insight. One woman asks if it’s okay for her to date someone who has reappeared from her past as her husband, confined to a nursing home, is unable to recognize her, communicate or interact. She hesitates, because she loves her husband, because they are married, because they have children and a long history together. Even her sons tell her it would be okay. Still, she’s unsure. Another woman speaks of curling up on her husband’s bed in his nursing home room, molding her body to his, so that “their bodies can remember together.”

I don’t think any books have been written for spouse caregivers that include more than a cursory nod to the issue of dementia and sexuality.  The dementia caregivers’ bible, The 36 Hour Day, spends less than a page on the issue. There are books and websites on general caregiving that say a little more. But generally the attitude is that sick people don’t have sex and the people who care for them (unless they’re perverts who prey on the weak) aren’t interested in them “that way.” Nonetheless, recent research in Great Britain shows that married couples in which one spouse suffers from dementia continue to have sex well into the mid- and even early late stages of the disease, an average of eight years after diagnosis. Surprise!

For early-onset dementia patients and their spouses, sex is an even more acute issue. As my husband sagely said, “Well, I’m still a guy.” And I’m still his woman. But when you're caregiving full-time, you just don’t feel sexy. When you do make love on those increasingly rare occasions, you’re still caregiving, because your partner can’t remember the moves. It can be pretty funny, if you let it. “No, honey, you have to lie down.” “Hey, I’m over here!” “Wrong place.” Etc. 

The trick is to be adaptable. I was going to say flexible, but that’s a different kind of sex. You have to do more, give more, take care of both his/her needs and your own more often. The reward is that you can get back that lost intimate connection, that joy, even if just for a few minutes. You can see your beloved's eyes light up, see see his/her face relax in youthful happiness and contentment. It’s worth it.

When your beloved is in a care facility, of course, sex is difficult, maybe impossible. There are usually no arrangements for conjugal visits. But being physical is still important, as much for the caregiver as for the one with dementia. The other day, I walked on to the ward where Pat has lived for nine weeks now. He saw me and his face literally shone with joy. I reached out to him and he wrapped his arms around me, held me for a long time, kissing my hair and my cheek. It was so affirming for me. Pat is still there somewhere, able to remember me and his love for me. Usually I have to say “I love you” first, and then he will say it back to me. Every now and then, he will spontaneously whisper, “I love you.” I delight in those moments.

I give him lots of back rubs because his lower back hurts almost all the time. I don’t know whether it’s disc degeneration or just the bad hospital mattress. I always hold his hand when we are walking, put my arm around him when we are sitting side by side. The other day, as I knelt at his feet helping him put on his sandals, he reached out and stroked my hair. He might have been thinking of our dog, but I took it as a gesture of affection for me.

Caregivers, don’t turn away from these opportunities to touch your beloved or to let her/him touch you. The beloved’s caress will still thrill your heart when you let it. If there is old unresolved conflict that you can no longer discuss because of his/her aphasia, loving touch is the same as forgiveness. Touch replaces words; it can even become a form of prayer, shared bodies that become a shared spirit. If you are willing to forget convention, forget our culture’s views of the elderly and sick as disembodied, if you are willing, despite sorrow and exhaustion,  to be flesh to flesh and heart to heart again. 

Who Reproduces the Reproducer?

I ran across this question when I was a graduate student in the 1980's. Neo-Marxist feminism was a popular theoretical construct at the time. Regardless of what you think of Marxism or feminism, the issue is an interesting one. The idea is this: social groups have producers and reproducers. The producers--traditionally a society's men--are cared for by the reproducers--women--so that they can continue their labor. Those who work in the public sphere are "reproduced" through food, clean shelter, clothing and care provided by those who maintain households and families.

Caregiving is the work of re-production, not in the biological sense, for it can be carried out by both sexes young or old in a pinch, but rather in the social sense. Caregivers reproduce the social order by taking care of those who labor outside the home and by shouldering the burden of those who cannot--children, the ill and the elderly who can no longer do productive work. The problem posed by this view of reproduction is, who takes care of the caregivers? 

Within small close-knit societies other caregivers share this work. The tasks of reproduction, both biological and social, are shouldered by groups of women (post-menopausal, child-bearers and girls) in so-called primitive social groups, and sometimes by men who are too old for the rigors of hunting and farming. "It takes a village to raise a child" and also to feed hunters and farmers, to build houses, to gather wild foods and plant gardens, to tend the sick, to care for the elderly and to watch with the dying.

The problem in modern post-industrial society is that everyone who is able-bodied is pressed by the cost of goods, food and housing into the workforce in order to keep the economic engine sputtering along. Though both men and women are wage-earners now, a number of studies show that women still shoulder the additional burden of social reproduction. How does this impact caregiving for elders and especially for those of us who are dealing with early-onset spousal dementia?

Okay, now I'll take off the academic mask and share with you how it affects those of us in the twilight world of younger spousal dementia. It's a lonely purgatory. We try to work for a salary and to use our real talents and give care at the same time, filling in the gaps with paid help if we can afford it, with willing friends, if they themselves are not wage-earners, with community volunteers, if they remember to show up. 

At some point, this very unstable house of cards collapses and we have to stop working outside our homes. The beloved simply can't be left alone for any period of time. Perhaps there is an interim where employers allow us to telecommute, but at some point the moment-by-moment attention required by our sweethearts requires us to skimp on our work, leading us to quit or be fired. According to the Americans With Disabilities Act, employers must accommodate increasing disability demands on the caregiver. But at some point, no employer realistically can make the necessary allowances for the intensity of dementia care.

Post-employment, we work so hard that we wonder how we ever could have held a job. The disease worsens, the demands grow. Sleep becomes a brief uneasy bout of dreaming that our spouses have wandered off, that we have forgotten to feed them, that they have become abandoned infants. Why is this not like raising children? The simple answer is deterioration. If you saw the film, The Curious Case of Benjamin Buttons, you saw the process. The person starts out intact, but ends up utterly unable. The light lessens month by month, at an accelerating pace in the late stages. 

The stress is somewhat alleviated if there are adult children nearby, helpful relatives, altruistic friends, a close-knit neighborhood, an involved and committed church group.If there are not, or if their numbers are few, the primary caregiver--wife or husband--ends up in a squirrel cage of chasing outside help, overworking, exhaustion and self-recrimination, even when going far beyond the boundaries of normal endurance. And what advice do we hear from dementia caregiver counselors, websites, books? "Be sure to take time to care for yourself." Reproducer, reproduce thyself. 

When I see or hear this, I always think of a cartoon I saw years ago. A disheveled young man is asked the question, "Would you do what you're doing now if you were going to die in six months?" To which he responds. "Oh, thanks, of course not. And if I don't die, will you pay my rent?" So thanks, helpful books. And will your authors come over and stay with a husband or wife every afternoon so the caregiver can get out and exercise, have fun with friends and pursue her/his life vision?

This advice is predicated on the assumption that every caregiver has the financial and community resources and family/friend networks necessary to leave their charge for hours at a time to "reproduce" their own energy and well-being. It's notable that almost none of the writers or websites suggest how the caregiver might actually do this self-reproduction in the absence of lots of money, adequate daycare facilities and family or buddies. 

In reality, with senior day care centers over-enrolled or oriented toward calm elderly women who like to play bingo, and truly adequate assisted living and nursing home care costing upwards of $5,000-$8,000 per month, not so many real-life people can follow the self-care advice. We are left with the difficult choice of trying to care for someone at home who is utterly incapable of even a few minutes of self-directed activity and placing them in publicly funded nursing homes that provide care that is less--too often far less--than optimal. 

I face that choice today. I'm meeting with hospital staff to discuss Pat's discharge from the Geriatric Psych unit. I know that I can't take him home again. He needs 24-hour care. There is one good nursing home here that accepts Medicaid, but their long-term beds are full. We've searched at least a dozen in San Diego and San Luis Obispo/Santa Barbara, but have been turned down by all of them because Pat is ambulatory and has a history of agitation. One in LA said yes, but they asked for $11,000 up front while they waited for Medi-Cal reimbursement.

 The hospital case worker and the attending physician may insist that I let them put him in a nursing home on the impoverished south side of the city. It's based in an old motel that looks like a rabbit warren. Or in another, where a dysentery-like disease sweeps through periodically. And I will resist, stand my ground for my husband and incur their hostility. But it's my job to see that Pat gets the best care possible. Until that's available, he's safe and comfortable where he is and still making progress in recovering sound sleep and a calm alertness. That's enough for me. I hope it's enough for Medicare to continue paying the bills.

You know, I'm really trying to make these essays less of a downer for you, dear reader. They're intended to be educational as well as personal. And they're also written to help other caregivers know that they aren't alone, but facing a common problem. One nursing home reform advocate I spoke with in California told me that it isn't that I'm not trying hard enough to find placement--the truth is that very very few facilities anywhere in the country will take patients like my husband under Medicaid. He's at once too healthy and too sick for their services. The reality, I think, is that they don't want to pay the insurance costs of housing people like Pat, because Medicaid reimbursement is so much lower than the monthly fees they get from private-pay residents.

Pat certainly isn't the only relatively young, ambulatory and healthy-from-the-neck-down dementia patient in the United States. Many thousands fall through a hundred holes in the safety net. These cases are where reality bites in national healthcare reform. I hope you'll join me in talking to your Congress-people about real systemic change  and compassionate services for former producers and current reproducers. Changes are afoot and, though they may not help the current generation of dementia patients, I do believe we'll see transformations in treatment and care in our lifetime.

Blessings.   

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.

Paper

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.