From Institution to Home

We’ve been home now for nearly a month, and it might be worth relating some of the details of life here, since we’ve finally settled down so to speak to a kind of daily rhythm—or at least are beginning to settle down to a life which involves daily care for 24 hours a day, 7 days a week. We’ve rounded up a pretty remarkable staff of people who work shifts, 7 am to 3 pm, or 3 pm to 11 pm, or 11 through the whole night until 7 am—sometimes two at a time, sometimes solo. At the moment, Peggy is here much of the time, though this will change a little when the academic semester begins in January. This staff—about a dozen people, most of them young, includes people we’ve trained, people with backgrounds in nursing, people with training in respiratory therapy, and miscellaneous others, like a philosophy graduate student, a former drywaller, former students of Brooke’s, and other assorted amazing types. The schedule fluctuates from week to week, at least at the moment, stretched across the day from 5:15 in the morning until 10 at night, and of course there are various procedures to be done in the middle of the night as well. What a wonderful collection of people—for the most part, entirely engaged in the project of caring well for Brooke. Of course, we’re aware that this is partly due to the terrible economic conditions in the country, and that some of these people—including those with brand new respiratory-therapist degrees—aren’t finding other jobs. We’re also aware that many of the other entry-level jobs out there or jobs at megafirms and big box stores are pretty inhumane—long hours or more frequently too-short shifts, required standby days without pay, firms unsympathetic to illness, and of course low wages and no benefits. Some of our folks are single parents, or people with educations but no jobs, or people in industries like computers or trades like construction that are collapsing. We don’t want to profit from other people’s miseries but we’re aware that working with Brooke, as strenuous and physically demanding as that might be, can be a haven of genuine human concern in an often bleak economic world.

Brooke’s schedule is for the most part much like that at South Davis, except that he is in the wheelchair, rather than in bed, for as much as twelve hours instead of just two or three hours a day—this is very good for circulation, breathing, and overall health. At this point, we have a home care company which temporarily supplies a nurse and three therapists—a physical therapist, an occupational therapist, and a speech therapist, not to mention the shower aide, who come to the house at various intervals during the day. They’re part of the great network of home health care workers who drive huge distances all over the valley, living much of their lives in their cars, another indication of the economic challenges of the times and the poor infrastructure of our health care system that provides home care largely on a temporary, intermittent basis as well as the sprawling nature of American life.

At last, Brooke's at home; that’s the important thing, even though this too has enormous financial impact: we’ll need to personally employ the equivalent of between four and seven fulltime workers to get single and often double coverage 24/7. But it’s time that’s really the issue: time for Brooke’s own interests, time for Peggy’s projects, time for both of us together. At first, we thought we’d have longer blocks of time together, but so far it isn’t working quite that way. At South Davis, Brooke regularly had long stretches of time by himself, in between procedures and checks by the nursing staff—those checks were always done quite efficiently and, unfortunately, without much relaxed time for chatting and talking. Now, it’s quite the other way around—our staff seems relaxed, at home, glad to be working together, but it involves way more time, way more talking, way more at-homeness than the efficiencies required by a cost-conscious hospital environment. So far Brooke’s days have been filled with therapy sessions and the usual routines of cough assist, cathing, bathing, medications, and so on that have to be done on a crushingly regular basis, and Peggy’s days have been filled with the demands of organizing the staff, the supplies, the vendors of equipment and services, the social calendar, and making sure that things run as smoothly as possible, easier said than done. At South Davis, Brooke, who spent about 20 to 22 hours a day in bed, was able to listen to thirty or forty books on tape (nearly all of them books about various periods of history—European, American, Chinese, Native American, Russian, and so on, trying to put the dots together, as he says); now, he’s lucky if he is able to squeeze in an hour or so of listening, a great deprivation. Those books on tape provided a good deal of his intellectual stimulation—that and his various visitors—but a day without them now is way less full, even if stuffed with medical care and staff interactions of all sorts. Yesterday, however, with a little time before dinner, he started to watch his second film—that is, only the second one he’s had time for in a whole month. If you’ve been imagining that his day is spent parked in front of the TV because there isn’t anything else he can do, you’re wrong. A huge amount of his time is spent in nursing care—though we’re gradually getting more proficient in this.

The house itself has finally attained some degree of normalcy. Brooke’s bedroom has some of his favorite etchings on the wall facing his bed, and two beautiful woven hangings on other walls, not to mention that photograph of the Buddha he took at a temple in Myanmar about five years ago, which we mentioned in an earlier blog—the photograph that got him through so much of the really hard times during his vent-weaning periods. The living room has been rearranged to open it up and make room for Brooke’s massive powerchair; he can turn on a dime in it and park facing out into the garden, even driving around the Christmas tree, left from when our daughter Sara and her family visited over the holidays. The renovations that were made while Brooke was at South Davis now somehow seem a natural part of the house: the new front door, widened for the wheelchair; the kitchen remodeled to accommodate the wheelchair; the carpet replaced with one with lower pile so that the wheelchair could drive well on it; the French doors wide enough for the wheelchair to go out onto the deck; the new, enlarged, sturdier deck itself that had to be raised to allow the wheelchair to drive out onto it; the windows replaced in the room next to the bedroom so that there’d be more light; the microoffice converted from a closet that provides a place for attending to the financial aspects of Brooke’s care and other bills and records; the ceiling lift in the bedroom; the decking in the shower for the shower chair, the one fashioned out of a lawn chair and casters; the upstairs room that is Peggy’s retreat; the “green room” as we’re calling it that is intended for Brooke’s caregivers to hang out in so that they’re not underfoot when he’s got other guests or just needs some privacy and tranquility; the modified sidewalk and front porch that allows Brooke to drive up to the house in the wheelchair; the driveway pan that allows us to park the van with room for the lift to function; and more. Despite all this, it’s still home—but with a little touch of memory from South Davis: the kitchen, the microoffice, the green room, and Peggy’s upstairs lair are all partly painted in the same mocha color that was in Brooke’s room at South Davis, a color he lived with for almost two years and never got tired of.

We always assumed that Brooke’s stay at South Davis would come to an end—that he’d leave there at some point, and that, we hoped, he’d come home. What is so scary to him, he said several days ago, is that he is at home, and what that involves. It’s about what the future will bring. It’s all scary to me, he said. I’m frightened, he said. Daily living is hard. Having people around 24 hours a day is hard. It’s the reality of home life that will demand a whole new relationship between Peggy and me, or rather a different kind of relationship. I’m very scared that I won’t be able to bring it off somehow. I mean, this will come to an end too. Well, he said, this is not Buddhist at all. “Living from moment to moment”--I’ve lost that somehow. I’m scared of the imaginary future and what will happen to us, and what it will be like for the two of us to live together in this situation. For example, we’re separated at night—I’m downstairs in my hospital bed, which more or less fills the bedroom, and Peggy has to sleep upstairs in the room she’s prepared for herself. Of course, we’re just beginning; we haven’t really gotten into any kind of fully satisfactory rhythm yet. Everyone said the first couple of months would be the hardest—here we are at one month, just about, and things are getting easier, but they’re far from easy altogether.

But there are positive moments: for example, I decided to come out of my room in the wheelchair yesterday morning and do one-on-one, off pacer, because I thought, this is a good positive start for the day. Then we had a wonderful dinner together, just the two of us, while the care person was in the back room, the “green room,” allowing us some privacy. This was the first dinner like this we’ve had, just the two of us. Just the same, I worried, you have to feed me—how will it sort itself out? I know I’m just being neurotic about this, he said, this life at home will have an end, either in my death or yours, or I may end up in an institution again—a lot of the kind of heroic life I imagined for myself hasn’t happened yet. Instead, we squabbled a bit over stupid little things, just the way couples do; perhaps this is also part of coming home. Now, in my anxiety, it seems we won’t have the time or energy to do anything constructive, only just to get through the health-care stuff. It’s so hard to be disabled like this, in this state, in this chair; I know I’m wrongheaded about it, but it’s also hard to know exactly what I’m wrongheaded about. Even though we’re beginning a urinary-control program, for example, I still feel that enormous dependency, even in trying to achieve something as elementary as taking a voluntary pee, and the feeling of total helplessness is sometimes utterly overwhelming.

Anyway, I’m scared. You know, Peggy, you’re the primary caregiver, that’s because, as someone said, you’re here all the time. Will you resent that in the end? Will my condition really be something that holds you back? I don’t know what I’m going to do. So at the moment home life to me seems fraught with difficulties, despite the fact that our caregiving team is coming together and starting to work really well. When I’m with B. and D. and L. and you, for example, talking about Sir Gawain and the Green Knight, I can’t keep up my end of the conversation very well. Is it the physical distance the big powerchair imposes? Is it the weird sound of my voice? Is it the slowness with which I speak, partly a function of what the diaphragm pacer allows, that gets in the way? It’s hard to talk fast on the pacer, and it’s hard to be quickwitted when you can’t talk fast. Is it just that my mind works more slowly, or is it that my body works more slowly and can’t express what my mind wants to say? My sister used a good analogy: when she was with her husband in France and he was just learning French almost from scratch, though she was already fluent, he always felt he couldn’t keep up at dinner parties. He couldn’t tell jokes. He always went home in despair, that his thoughts were going faster than his mouth could express them. It’s the sense of humor and the appreciation and expression of humor that is most lost. I still haven’t gotten used to being in this physical situation fully and the way it affects communication; mentally, I’m the person I always was, but the two things don’t connect so easily.

Other people relate to me differently too, or I interpret what they say differently or misinterpret their looks. I’m comfortable with the people who’ve been around a lot over the last two years, and for them the wheelchair and the paralysis is just normal now, but for some other people I’m aware that these things make them uncomfortable. I'm sorry; I wish I could make it easier for them, easier for them to come to our home. It’s so different from what I imagined it would be like.

That was last week. We’ve been trying to write this blog for a long time, but in the comparative chaos of reentry into home, we just haven’t managed. Now it’s:

New Year’s Eve: We’ve decided what we want to give each other for an anniversary present—it’s our 25^th anniversary tomorrow, January 1, 2011. Brooke still requires a hospital bed, but we want to get a wider one. Of course, the insurance will only pay for a narrow, single width bed, albeit longer, but because he doesn’t weigh more than a normal-weight person, they won’t provide a bariatric one. So we’ll just get one—this is about marital intimacy, even if that means something different in the context of near total paralysis, proximity is still of paramount importance. And as the song goes, a kiss is still a kiss, even as time goes by.

New Year’s Day: Here it is, a new year, a new decade, and also our anniversary. Imagine, 25 years, plus the 10 years we lived together before that. In total, that’s more than a third of a century. In the wedding ceremony we wrote when we got married, we never made any of the conventional promises, like love, honor, obey: love didn’t need to be promised, since it was already there, and in any case can’t be promised for the future; obedience on the other hand was out of the question. Nor did we recite that traditional line about “in sickness and in health.” Brooke’s injury is you could say a form of non-health, but we’re still here together, whether we promised it or not.

We’ve been making New Year’s resolutions: Brooke, for instance, resolves to learn how to embrace pain. Peggy resolves to learn how to relax with having a lot of people around all the time; she’s starting to enjoy it. She also resolves (though she does this almost every year) to get rid of all the piles of papers and other stuff that’s around the house, since that is now so much more in Brooke’s way. He’d said, When I first got here, for awhile the place was reasonably empty and that made me happy, but now there are chairs and stuff everywhere and I can’t move around among them—I wish you’d resolve to do something with them. I can’t move them; I’m helpless, and I can’t move them. So she resolves to keep the place cleaned up and really spare, and furthermore to welcome being nagged about this. Brooke meanwhile talks about further adapting to the situation we’re in—this might seem like a pretty abstract New Year’s resolution, but it has many details. And there are many positives of being at home: The sense of freedom is much much greater—we can manipulate the schedule, pare down the medications, experiment with off-pacer time and physical therapy, cook our own foods, choose our own bath times, bed times, cath times, etc. and in general design our own lives, even despite the realities of Brooke’s physical needs. And the improvement in Brooke’s condition since he’s been home is so great—better breathing, better movement when he’s doing physical therapy, more sensation, better voice, less pain, decreasing anxiety, better general health. And he spent over an hour today off the diaphragm pacer, just breathing as his normal self.

Must be that the initial terror of being at home is starting to turn around—for all of us.