One more week. That’s what the rehab hospital is saying. My wife will be there one more week before she is discharged, assuming she is ready for discharge then. The idea, they say, is for her to be as self-sufficient upon discharge as she was before entering the hospital. That will depend in large part, I think, on her medications and the extent to which their dosages, etc. have been properly adjusted. I’ve seen little evidence that doctors have spent any time with her; not even reviewing her charts. That upsets me; I expect physicians to actually see patients, face-to-face, and to ask questions and make personal observations, rather than rely on recorded observations of others who may or may not have engaged in sufficient personal assessments. And even that arms-length interaction seems to be missing.
I do not know, though, what questions I should ask, what demands I should make, what I should do to ensure my wife is treated as more than just another in a long line of patients. She is not just another patient; she is a crucially important patient, a patient as important as any a hospital staff can possibly encounter. I just don’t know how to make that point. I don’t know how to insist that she be given extremely focused, precise, caring attention; not artificial attention prescribed by protocol or quota.
I have been in hospital settings before, and I’ve always judged people who demand more attention than I think reasonable. As if I knew what was reasonable. As if I had even a bloody clue what was reasonable. But I felt comfortable judging people who wanted personalized attention beyond what I thought was sufficient. I always gave the healthcare professionals the benefits of the doubt; patients and their loved ones, I assumed, were panic-stricken and overly-demanding. That assumption no longer squares with me; I was among the pricks who failed to deliver sufficient compassion where it should have been delivered. I thought patients and their advocates were over-reacting or were arrogant in their demands for more attention than they were being given. Now I understand, far better than before, how fear and concern and hope all conspire to make patients and their advocates seem unreasonable. I understand, too, that the appearance of irrationality is a fractured reality that does not encompass the real world of fear and concern and hope.
It’s not that I think her care is lacking. It’s that I want her care to be more intense, more personal, and I want those who care for her to acknowledge that she has been under the care of a cardiologist whose prescribed care seems to have been thrown out the window. Perhaps I’ll call her cardiologist today and insist on talking to him. Maybe I’ll do that.
I will not visit her today. Instead, her sister will go see her. I suspect that will be a welcome change of pace for my wife. I will devote my time today to other responsibilities and obligations. Among them will be a call to the “case manager” who discussed with us after-care. I did not write notes about our conversation, like I should have done, so I am not sure of what she told us about when to select a home-health service; I don’t recall how long we should expect assistance, what they can do, and a host of other matters I should know. My notes are inadequate; it’s as if I wrote my notes in an abbreviated foreign language I never mastered in high school. I wish I could record the call and have someone else transcribe it.
This single-minded focus on matters over which I have little direct control is not particularly helpful. If I had a magical little pill that would loosen the grip around my own neck I would take it; maybe two. I can feel the tension, especially in my neck; it’s as if I flexed my muscles too intensely and cannot un-flex them. I suppose that’s why massage is so popular; it releases the physical strain and transforms anxiety into a byproduct of stress that washes away with the strain. At least that’s how I perceive it at the moment.
One’s perspective changes as the day progresses. This morning, the rain and thunder and lightning combine to form tight balls of anxiety in the air. I can hear the raindrops hitting the windows and I can hear the sounds of water surging through the rain gutters, then the constant drip, drip, drip of water pelting aluminum downspouts. When the rain clouds blow away, as they surely will, my perspective will change. The sun, or at the very least its light, will begin to fill the sky. The rain and thunder and lightning will become memories that no longer matter because they will no longer manipulate the way I see the world outside my window.
But maybe I’m wrong about that; I just turned out all the lights and gazed out into the darkness that is just barely beginning to transform into a dim glow. The glow is, I think, sunlight filtered through thick fog and heavy clouds and light rain and blowing mist. Maybe that’s what this day will bring; just more of the same. Perhaps my perspective will remain fixed on a grey blanket of unpleasantly warm, humid air. My forecasts are notoriously inaccurate; when I predict rain, the drought begins and when I expect the drought, epic floods wash away centuries of topsoil. If that were true, the expectations would simply need to be adjusted to reflect reality; then, the predictions would be precise and correct. It is, after all, just a matter of perspective. Or, more precisely, a matter of interpretation of what one sees and feels and senses.
If rain and thunder washed away muscle tension, I would gladly dance on the deck this morning. The base of my neck feels like it is made of a massive cable, the kind used to support bridge structures; twisted strands of thick steel braided into rope impossibly heavy and unbending. Perhaps by being overly dramatic about the tension in my neck I can bring myself to laugh at my own silliness, thereby releasing at least a little of the tension. It hasn’t worked so far. Maybe I need to go full-on Shakespearean, or take on the attributes of daytime soap operas, pretending the weight of the world is on my shoulders. I don’t like daytime soap operas, though, so it would be hypocritical of me to adopt the style of their writers. Actually, I do not know what daytime soap operas are like these days. Maybe they have changed since I was a kid. I remember viewing them then, when my mother watched them from time to time. I did not like them then. I suspect they’re still the same; overly-dramatic, formulaic swill that for reasons unknown sometimes appealed to intelligent people like my mother. Am I drifting? Yes, apparently I am. I have not only drifted to the edges of the channel in which I’ve been floating, I have gone aground on a sand bar and made my way up the steep banks into the thick, snake-infested forest through which the stream flows. I think I’ll stop writing and prepare something to eat; something so distant from typical breakfast food it will confound me into thinking I am having dinner in another country.
And that’s it.
I agree with Linda’s comment. You do have to push a little. Advocacy is so important these days in these kinds of situations. I hope all works out well and that Janine will be able to come home soon.
Thanks, Linda. Yes, I am in touch with the people I think I need to talk to. I’m sure people care, but patients to them are a dime a dozen, whereas to patients and their families, they are precious. I look forward to having her home.
Yes, John. Call whomever you need to call because if it’s one thing I’ve seen about doctors and hospitals of today, you have to be vigilant and forceful about your care or have someone who will be. Some of them don’t seem to care. I had to do that with my spouse. Ask questions, make them accountable. Give her our love and blessings, and we wish blessings to you as well. I know you want her home and we’ll.