The proposal to the insurance company for Brooke’s diaphragmatic pacer has been cleared by the insurance company’s medical panel, the doctor stopped by today to tell us, and while this isn’t the final approval, it’s looking good. It’s time to plan for coming home, the doctor says, time to start working with the social workers, finalizing plans, learning treatment routines, and more.
Of course, we don’t know when the surgeon will come out from the Cleveland Clinic to do the pacer implantation, or how effective the pacer will be, or how long after the implantation it’ll be necessary to stay in this facility, with its skilled nursing care. All we know is that the doctor spoke really directly of coming home for the first time, intimating that it could happen soon.
Brooke saw a look on Peggy’s face that was almost like panic: think of the stuff that still has to be done. How will I finish the preparations? How will I get the house in usable order? And how will I ever keep all the sticky notes under control?—they keep springing up everywhere, as if they had lives of their own. And Peggy saw Brooke’s distress, something in between fear of dependency, concern for the look on Peggy’s face, and feelings of utter helplessness in a place where he can’t do or control anything. We both realized that a sea change is finally on the horizon, wherever that horizon is at this point; it is certainly somewhere closer than we had been imagining. We’ve been looking forward to homecoming so long, and yet when the reality starts to present itself with all its numerous logistical and emotional complexities, we suddenly feel overwhelmed. How will we manage? How will we find enough people to attend to Brooke’s needs, beyond those who are around now? How will we complete the house modifications in time, so there’s no dust or loud hammering or noise? Where will we store all the supplies? How will we get our friends trained enough so that they can spend time with him alone, without the support of a whole hospital staff in the background, just in case there’s any trouble? We find our minds swirling with thoughts of the difficulties homecoming will present.
We’ve been looking forward to this homecoming for all this stretch of time, but when it hits, Brooke says, it hits like a bombshell. Peggy’s been more or less alone in the house for all this time—except, of course, when there’ve been visitors in town; what will this be like for her when it changes? I’ve been in an environment with a huge staff; what will it be like for me when my caregivers narrow down to just a handful of familiar ones, however much I like them? We’ve been dreaming about having breakfast in the new breakfast nook, looking out the windows together from home, but the reality is not likely to be as easy as that. It’ll mean waking up at 5am, having a suppository, bowel care, followed by the fairly elaborate process of getting up in the chair. It’ll require at least one and usually two other people in the house during the day, and at night, for that matter. It will involve a complete change of life patterns for both of us, in different ways. I’ll be out of the hospital and away from this care, and Peggy will have to figure out how to keep her private space and how to keep up with her work; we’ll have to figure out a schedule. We’ll have to have a very elaborate plan when Peggy’s away, especially at night. We’ll have to have somebody trained in emergencies on call 24 hours a day. We’ll have to have a CoughAssist machine, devices for suctioning, a tilt table, an extra hoyer; in fact, we’ll have to rearrange the whole back of our house for all the equipment that’s needed.
It’s about dream and reality, and the negative and positive sides. One of the negative sides has to do with space and intrusion—both intrusion into private space but also the way in which other people’s fears about intrusion, we’ve been told, may discourage them from coming.
The positive side has to do with developing a community of people who can help, both physically and, more important, emotionally and intellectually. We’ve always spent a lot of time away from home, mostly traveling all over the world, but home as we’ve said earlier will have a very new meaning now, and in a sense be much more than just a place to hang your hat in between trips.
Dream and reality. I’ve had a lot of dreams, says Brooke—dreaming about teaching the OSHER course, about going to the Hotchkiss reunion this June, dreams about home. But not all these dreams are easy ones; there are night fears too.
Most of these concerns, especially the negative ones, are about physical arrangements. Yet when we try to imagine the emotional and intellectual aspects of moving home after more than a year in the hospital it gets even harder. Will friends still come to visit with the wonderful loyalty they’ve been doing? Will visitors from out of town still come, and still feel welcome, visitors like the one who wrote the remarkable comment to the previous blog entry, Brooke’s former student, the poet Mike White? Will we find things to do together, reading, thinking, talking? Does a visit in the hospital have some sort of special cachet that a visit at home wouldn’t have, or will it be the other way around? How can we make this not just our home, but a sort of home-away-from-home for people who care about Brooke too? Folks with experience in these matters tell us that homecoming is one of the hardest parts of this whole thing, and here we are, already starting to worry about it now. This isn’t the first entry about anxieties about coming home, even if it’s titled that way, and it surely won’t be the last.
Of course, if we were to remember the lama’s early lesson, it might help now. Don’t think about the past and what you can’t do now. Don’t worry about the future; it isn’t here yet. Live in the present moment, and focus on what’s good about it.
So here’s the present moment: We’re still in the facility which has kept Brooke as comfortable as possible, which has treated him with remarkable kindness and dignity, and which has provided an endless stream of nurses, aides, respiratory therapists, and of course custodial workers, almost all of whom Brooke enjoys and who enjoy him. Right at the moment he’s busy trach-masking, listening to a new Julian Bream recording of baroque guitar, and clearly “in the zone.” So why should we be worrying about coming home? We’re here, now, and while in some ways we can hardly wait to get home, we have also to remember that this is home right now.