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.

What Remains

This is not a question. Because after eight years of pushing back against dementia, I'm constantly surprised at what does remain--the memories, sense of self and humor that Pat still can muster. Tonight, he wanted to be in the kitchen with me. I'd usually push him out into the living area, telling him that the very small galley's not big enough for two, which it isn't. This evening, I let it be. He hovered over me while I mixed a batch of peanut butter cookies and heated baked beans and sausages to make the night seem warmer. We admired three perfect bell peppers together, and then admired them again in the salad, bright squares of red, yellow and green nesting among bronze lettuce leaves.

We lingered over dinner, looked at a photograph of Pat, his father, his son Chris. He knew the picture was taken in Cambria, recognized everyone and knew that it isn't how Chris looks now, that he was much younger in the photo. We talked a little about what was happening in Pat's life at that time.

We spoke of the music that was playing on the radio, a Schubert symphony, and agreed that neither of us had ever cared much for Schubert. We could both hear the bass viol. Pat used to play the bass and can always hear it, but I can't. After dinner, he walked around for a while. He wasn't agitated or unhappy. I checked in with him, we listened to a little more music together and he fell asleep to James Taylor singing "September Grass."

These are such ordinary things, not the stuff of important reflection, unless they are all you have to make a relationship. Then they become precious, vital. When I think of Pat going back into a nursing home so that I can work full time, these are the things I must weigh against my great need to have a normal life. If his experience this past fall is any gauge, he would again, and probably permanently, lose these simple abilities and memories. He would no longer be able to  identify the past as past or talk about the present with anything but unhappiness and terror of the unidentifiable.

But here at home he is mostly himself. His sly comments and half-smiles, his offers to help me with things he can no longer do, certain ways of commenting on ordinary activities like getting dressed. Holding each other, resting my head on his shoulder. These moments are what I have of Pat now. I'm very reluctant to give them up. It's true that I can sometimes draw them out in a hospital setting, but there he must do without that sense of security, of himself, when I'm not available.

Am I taking too much credit for maintaining his well-being? I don't think so. This intimate knowledge of the other is one of the areas where spousal caregiving is very different from parent caregiving. Parents want to maintain their independence from their children--there is much that we don't know about our parents' inner lives and histories. Spouses are bound together by choice, by constant communion, by whatever that mysterious connection is that love and sex create. I call my husband back to himself in a way that I don't think I could call my mother back if she were living in dementia.

Today, I read through a Christmas letter I wrote ten years ago. It included pictures of our dogs who have both died in the intervening decade. I wrote of work, of Pat being so busy with contracting and carpentry jobs that he was having trouble scheduling everyone in, of the beautiful garden gate and courtyard door he made that year for clients, of house remodels, of trips to Big Sur and Pacific Grove, of bicycling around San Luis Obispo, of walking the dogs by the sea. None of that life remains. I'm glad to have the letter to prove it ever happened. It all seems now like a dream I had, years ago.

No. It's not true that none of those things remain. I wrote about a table that Pat was designing. It's sitting behind our couch right now. In a few minutes, I will go and lie down by my husband as I have for so many nights, so many years. I will kiss his cheek, tell him goodnight, tell him I love him and he will reply, if he's not soundly asleep. Just as we always have.

It's not the relationship we planned or the one we actually had for a few years. Sometimes he calls me by a name that is made up of the names of several women he's known. Sometimes, not too often, he asks who I am. But there are these other moments, these glances, these few words. And they do matter.

Indecision

We're in the deep midwinter now. Icy winds actually are making moan around the house today, just as in the carol. A bright unforgiving winter day, reminding me that my favorite thing about southern California is that right after Christmas, it's spring. I am not a fan of winter.

But writing about the seasons does help me work my way into these essays. Like the ancient Japanese haiku writers, who wrote about the weather almost every day. Weather places us, gives us an orientation toward our surroundings. When, as a caregiver, you are constantly inhabiting someone else's head and your own at the same time, it's good to have something like a snowstorm to remind you of the world outside.

My mother just visited. One of her few comments on my care for Pat was, "It's just so constant." Yes, it is constant. I am constantly responsible for making not only medical choices, but ALL the choices that keep my husband in health and safety and some degree of happiness. Like a single parent with no co-parent to consult, I must choose well for the person, in this case my spouse, who depends utterly on my wisdom for his life. And I'm also supposed to make good choices for my own.

Scary enough. Then add exhaustion and meager resources that have to cover a range of expenses including paid caregiving so that I get a few hours away each week. Mix in government agency red tape and un-returned phone calls to potential nursing homes and dementia resources. Beat thoroughly a myriad of Medicaid and insurance forms that seem to have directions written in a language I never learned, ordinary house cleaning, bill-paying, car repairs and grocery shopping. Stir together with job hunting, resume crafting and online applications and cover letters. Then fold in constant (at least every ten minutes) unintelligible yet urgent questions from my husband, and there it is: A recipe for profound confusion and indecision.

The problem is, I'm indecisive to begin with. I spend inordinate chunks of time weighing alternatives, writing checklists, and examining pros and cons. In the end, I almost always choose what my gut told me at the start would be the way to go. But the process is an attempt to mollify my fear. Fear that I will choose the wrong path, that it will lead to some unalterable error that will negatively impact not just my life, but Pat's as well.

This has, in fact, happened more than once, though almost always, the negative was at least balanced by positive experiences and life lessons. But to have to choose for someone else, especially to make choices that will have health or happiness, even life or death consequences, is paralyzing. My self-doubt is like the predator transfixing the gaze of the prey. My response, like any good prey, is to hold perfectly still. It's called procrastination. But it, too, has consequences.

Right now, the salient question is whether or not to put Pat back in the hospital for a few weeks and then transfer him directly to a nursing home in California. On the surface, it seems straight-forward. I am getting worn down; he is increasingly agitated. Answer: commit him for three weeks and get a nursing home lined up meantime. Simple. Only it's not simple. And for once, it's not just me making it complicated to forestall choosing.

First, getting him to the UNM psychiatric hospital from Santa Fe is a complex process, as I've written before. Then there are major issues involved in transferring someone from a hospital in one state to a nursing home in another. Second, I'll have to pack up the house, sell items, clean, paint and have repairs done so that it can be rented--and find a rental agency to manage it. Third, there's the actual drive (flying is out of the question--they wouldn't let him on the plane) from here to there. How do I manage a fairly robust man with severe dementia for two days in a car?

And of course, all of this is contingent on me finding a job. That actually has to come first, because where I find work determines where Pat will end up in long-term care. I have a dream, which I'm happy to share, that I'll somehow find a wonderful couple who can be live-in caregivers, and a great place with a separate living space for them. And a terrific job that can support home care--my current understanding is that MediCal won't separate assets for anything but institutional care.

But logistics aside, the greater issue is Pat's health and happiness, and mine. I've seen how he fares in hospitals and at least one nursing home. Granted the latter was the barrel's bottom, but there is something about Pat that can't thrive in institutional settings.

Other dementia caregivers must have this experience--I hope they know something that I don't. So many resources talk about mom just settling right in after a couple of weeks of pouting, or dad loving the attention from attractive young CNAs. And I did see people at Casa Real who seemed fairly content--they had friends, the nursing assistants spoiled them with attention, they enjoyed bingo and paper crafts. They were all older women.

Pat is still who he is, somewhere deep inside. That confined passive world doesn't suit him. He's like a wild free creature who wastes away when caged. So how can I do this to him? How can I put him in a an institution where he will wither? On the other hand, how can I go on with caregivers dropping out like tired pitchers, Pat getting more erratic and too many things like bill paying and income generation left undone?

The answer to both questions seems to be, "You can't."

So what is the third option? What is the divine surprise? I don't know. I hope it shows up very soon. Hope is the relevant word here. The belief that all comes right in the end. As Julian Norwich said, "All will be well, and all manner of thing will be well." Indecision wears down hope. And I need a full measure.

Outside our warm home, the wind has died down, the stars are sparkling. It is very cold this winter night.



/

What does it mean to serve?

Stepping out of the world of normal employment for the past seven months has given me time to reflect on the pace, relationships and quality of the work I've done in the past, and my motivations in doing it. My goal in caring for Pat is to help him feel safe, happy and loved. Having never raised my own children, I don't think that this objective has ever been even a minor motif in my daily work before. It gives me pause. What matters more than serving another human being? Than using one's energy and talent to make another life or lives better?

I've never been very excited about the word "servant." My mind automatically goes to adjectives like servile and subservient and the vision of menial work done at very low wages for domineering egotistical employers. Recently, however, I've been thinking a lot about work as service, as an exchange between people who are in a relationship, however momentary or long-standing, one that has the potential to create mutual benefit and joy. It seems to me that work in the post-modern world too often lacks joy. The service in many "service industries" is hurried and harried, even bitter, rather than personal and fulfilling for all parties.

Work today seems to involve so many negative elements--catering to superiors (which is not the same as serving them), ruthlessly competing with co-workers, friction among laborers and between labor and management, self-promotion and aggrandizement, over-working to qualify for promotions and raises, sudden and inhumane firings, low and stagnant wages that do not reflect the true value of work done, fear of being outspoken or too inventive (especially in bureaucratic and "top-down" organizations), unwillingness to work hard, the "dumbing down" of workers who are not supported for participating in knowledge-building education. The top complains about profits and the rest complain about wages. But who talks about service and actually walks their talk?

When I was working, I sometimes tried to speed through my workday so that I could get back to my "real life." My home, my husband, our garden, our dogs, our community and my writing--these were the parts of living that really mattered, where I wanted to serve. Work was an interruption. I'm afraid this is true for a large percentage of the employed and it strikes me as very sad.

The contemporary world of work isn't usually integrated with the rest of life. Either it is an afterthought, or it is all consuming, pushing family, community, recreation and health to the margins. Some people love what they do so much that they don't mind this lopsided life. And perhaps they are called to it, given to a life of service through their business or their workplace. But I think a lot of us do not view work as service; rather, we see it as compulsion, to which we alternately give in or offer resistance. So how do we right-size our work life, make it more like the kind of service we do gladly for family and friends?

I've learned a great deal from caregiving for Pat about the wrong way to serve and hence, the wrong way to work. For several years, I've been his primary and at times only caregiver. The whole weight of his safety, happiness and well-being rested, I thought, on my shoulders. Several people told me I was his angel, but much of the time I didn't feel in the least angelic, scarcely even loving.

I burned out this summer, just when his condition worsened and he needed me most. I had lost my job, my sister had died a few months earlier, our dog died suddenly in June, we had only a few friends in Santa Fe. I ran out of internal resources. It was as if God had to drive me to this extremity to get me to stop trying to handle it all myself. As a friend kindly said, "You're doing a great job of trying to be Pat's Higher Power, but, you know, you're not."

Her words struck home. I had to sit down and examine how I'd been "serving" Pat and the harm it had done him and me. I'd been trying for months to get him to be more like my memory of Pat--relaxed, funny, accepting. Not so that he would be happier, though that's what I told myself, but so that I could escape the burden of caregiving and grief that weighed far more than I could carry.

The first thing I had to do was to turn Pat's life over completely to the care of God, who loves him more profoundly than I do. The same God who had given me to Pat so that he would have someone in his time of need, as he himself had been there for so many others in theirs. The same God who had given Pat to me so that I could experience being loved and accepted for exactly who I am.

Surrender is another term I don't like very much, but surrender is at the heart of this lesson in right and spiritual service. The key to serving this way is comradeship. You can only do it by seeking and accepting the help of others. By recognizing that collaboration is the one way that anything truly succeeds. We don't create the best outcomes through being selfless solitary heroines giving all or by being Howard Roarks in our own Randian universes. I was shocked to find that I have absorbed this cultural Lone Rangerism to such a degree that it actually kept me from picking up the phone and asking for help when I was desperate.

Coming out of isolation in my role as a caregiver and admitting that God has a plan for Pat that isn't entirely dependent on me has taught me profound lessons about work. First, it doesn't serve us or the organizations we work for to accept assignments that isolate us from colleagues. Second, it's okay not to know all the answers, not to be the smartest kid in the room. Third, service is humbling. It's supposed to be. If everyone in a workplace dedicates him- or herself to serving each other and letting go of frantic ego-driven activity, then service becomes exchange, collaboration, right livelihood.

Finally, I've learned that I work for God. Something I try to practice now is to sit quietly at the beginning of the day and ask for my marching orders. What steps are necessary this day? Who could help me take them? What serves my goal of taking the best care of Pat that I can, of being responsible but not isolated, and of widening the circle of good work in this world?

This is where I try to start now. Then I ask for help in doing the next right thing. I pick up the phone or send the email. And grace abounds.

Happy New Year, dear friends. Thanks for being part of the great circle of service and support.