Tuesday, January 8, 2013


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.


Tuesday, January 1, 2013

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.