‘La parole a été donnée à l’homme pour cacher sa pensée’ [Speech has been given to men to hide their thoughts — Talleyrand
‘Mio superbo guerrier!’ [Oh my magnificent warrior!] — the Admiral admonishing me on how I ought to address him, home from hospital, as Verdi’s Desdemona did Otello
Dear friends and readers,
Yes he came home, late yesterday afternoon, stumbling down our crooked uneven path leaning hard on that walker at around 6:30, between downpours. Unexpected and sudden as the news was at first, it became a long wait as the “case managers” — for Kaiser, for the hospital, for Equinox (a company that sells liquid food. equipment to administer feeding by tubes direct into someone’s abdomen, nurses) struggled to put together the discharge papers. The longest hold-up was waiting for a physician assistant who seems to spend her life (at least 71 hours a week someone told me) operating on people to sign off on the documents.
It would have been longer but for me. Since yesterday morning around 11 I have found myself a little red hen with lots of helpers who seem to exist far apart, and reach me by phone, except for an essential nurse (from Equinox but paid for by Kaiser) who comes bodily here, makes visits (!). Ken has been here twice for several hours and Caroline too with direct help (bolder and quicker than me to understand what’s wanted, to envisage what an instruction means).
Only yesterday morning directly after the Admiral phoned to say “the doctor said I can go home,” and so probably will sometime today did I feel fully like the little red hen. My Friday night panic was vindicated when I was phoned by a new (and quickly abrasive) case manager to say the the admiral “must go home today” apparently under the impression that “can” and “must” have the same meaning. The language game that ensued was basically use evasive language in order to maneuver me into paying for the equipment and supplies from Equinox (absolutely sine qua non, pump, syringes, bags, pole) without admitting that I was forced to. Equinox I had learned on Thursday was equally determined not to be candid and leave this as a mystery after stating “Kaiser had denied supplies.” This was everyone’s favorite mantra without saying how I was to get them or where.
Well the three hysterical phone calls on Friday night had elicited three decent people on the phone the next morning with numbers, and I used these to cut through the shit to order and give my credit card to pay for said supplies, pump &c. One Karen who had delivered the packages of the liquid on Friday afternoon promised the supplies by 3 pm and Caroline told me that by 4 when she arrived there they were. I would have paid for the teaching visiting nurse but there suddenly clarity burst forth and was told Kaiser had “set this up,” had “arranged” for a first 8 visits.
The terms of art are “referral,” “arranged,” “set up,” “put you down for.” and well if “that’s what you are comfortable with.” When people say that to me after I’ve been somehow pushed into something, I retort, “I am not in the least bit comfortable with this. What makes you think I am comfortable with this?” Gets me nowhere of course except satisfaction that the hypocrisy has been pointed out.
At any rate my heart was easy as yesterday around 3 pm we were sitting waiting for the doctor to sign the orders for the medication and discharge instructions — not that it’s not anxiety-producing setting up a machine to feed the Admiral 6 packages in bags through a pump and tubes for 16 hours a day, with “free” (inexpensive? from the faucet) water, 60 ounces every 6 hours. I dare not try to stay up by reading for I do doze over my books, so here am I with more excuse than ever to watch movies, DemocracyNow.org and write blogs. Today twice I was helped and watched and part helped crush pills into cups, make water compounds and then administer them through a syringe after I “flushed” the lines. He is also on a catheter at least until Thursday. I found a large round plastic tupperware that (slightly amusingly) resembles in shape the porcelain chamber pots I remember in the 1970s in England under the beds upstairs in the Admiral’s parents’ house. We use this.
Today’s exhaustion and dizziness for me by the end was the result of my driving round the map of Northern Virginia, back and forth to Kaiser facilities. First I went to Springfield to bring back the medicine the orders were for, but one of these, important heart medications against fibrillation of the heart (which had happened in hospital twice), had to be ordered in suspension form and the pharmacist technicians were unable to reach that same doctor (endlessly in surgery — does she ever sleep? and where?) to sign for pills. So I was told to come back tomorrow after 3 for the suspension. I got home and Ann (no one ever tells their last names), a Kaiser nurse, called from somewhere or other to hear what were the medicines we had, how were we doing, and discuss each. She worried over this lack of the heart medication and the lack of an order for anti-acid pepcid and said she would call back. When the teaching nurse came, he looked grave at the lack of this pill. The admiral should email Dr Wiltz, his general internist to ask “if he can do something, ” and (remarkably) within minutes there was what appeared to be an order for this medicine in pills right now.
(Dr Wiltz had phoned me the day the Admiral came home to give me the appointments with urologist and cardiac specialist. Not it should be said merely out of the goodness of his heart, but because I was very sharp with that case manager and her evasions. When she put it that she would ask Dr Wiltz for approval for these necessary people and would not say he would have them for sure, I hit the ceiling linguistically. He said he had heard “I was concerned.”)
So I drive there once again only to be looked at with puzzled faces and told Dr Wiltz’s medicine was for something else. I phone the Admiral to be told Ann had phoned directly after I left to say the heart medicine and a substitute for Flomax (an easier pill to crush) had been phoned into Falls Church medical center. I couldn’t help ask him if I was expected to fly low? (I knew I shouldn’t have done that.) He said Ann was phoning the Springfield people even as I was sitting there. And it turned out she was for the pharmacist assistant signaled me, beckoned me over, and explained Ann had just called and the strange medication Dr Wiltz had written out was a substitute for Flomax and this and the pills would be ready very soon. And they were.
What is a home care-giver? not quite on on-the-job training nurse, for what I’m doing after all is simple and if I get into any trouble or he starts to have any number of worrying symptoms, we call and drive him in. All blood taken, vital symptoms and the like are done by Ken, our teaching visiting nurse. I’m the team’s point of contact and traveling aide.
Should hospitals send people home in such a state? They do. Dr Dort (the other doctor at the operation I’ve not mentioned as yet) kept saying “hospitals are dangerous places.” Then they are expensive — we paid in effect a deductible — $250 a day until we reached $750 and then after it was Kaiser who would pay. Dr Fortes wanted to send the Admiral home last Friday, but he had had “minor complications” (bladder not doing its job, heart beating irregularly) and even Dr Fortes didn’t dare.
The admiral couldn’t sleep in the hospital; he was once driven to watch “a dreadful” Arnold Schwarzenegger movie at 5 am. Surely as bad he said as Jason and the Argonauts, our personal standard of driveling offensive idiocy.
He said he worked hard to make the last three (very good) nurses who stayed with him over the last 3 days (Friday to Monday) like him and I could see they did. All women. One gave him an affectionate look at one point. He praised them in front of them and was all courtesy and made it his business to remember his medicines too. They gave us all sorts of free equipment and one enabled us not to have to wait for someone with a gurney to leave but herself found a wheelchair and wheeled him out to my car which I brought round from parking further away. One did not know that he thought she couldn’t explain anything. I had to insist that she go ahead and teach me how to flush a syringe (which she wanted to show me badly) because he was already succeeding in being stubborn and refused this on the grounds the teaching visiting nurse would show me. But what if she or he weren’t there for a while, asked Ribka?
He was not friendly to a patient he shared a room with for a while — I was, not out of policy but because I cannot ignore people in the same room.
He seemed to get better by the minute as they took off tubes and IVs, and he got out of the gown and was able to put on his cotton sweat pants, T-shirt and shoes. I could see he was feeling more human, his pride and a sense of independence coming back. He refused to allow Sheryl, his basic nurse, to keep the little machine that measured his heart on a line on the last walk. He did not want to know his heart was fibrillating. She tried sighing and then gave in to him (you see he was winning her over the way he manages me) but half-way round suddenly had a machine which measured his heart rate at hand on a pole. The measurement showed his heart was beating normally. So she won too.
He slept last night — exhausted after the day’s waiting and stress. I was the one having a hard time listening to the pump and his painful coughing. He is still expelling “stuff” from his lungs. Breathing sometimes seems hard. (I had wanted to get him a vaporizer or machine that would improve the air, but he wouldn’t hear of it and I hadn’t wanted to stress him over such a thing.) Finally I took a melantonin, an over-the-counter sleeping pill which is moderately powerful.
Caroline has been in and out and tonight showed the power of her fingers to mash the pills into a smooth kind of liquid that was easy to push into the feeding tube. Both he and I struggle with anything Ken twists closed.
Our ginger tabby cat, Ian (“who’s an orange cat?” is Caroline’s perpetual question), was glad to see him. (Well doesn’t he count?) He spent some time trying to cuddle this way and that and pushed gently away consistently finally settled for sleeping and laying nearby. Clary, the girl, seems to cuddle into all the new bedclothes aligning herself with Ian. Perhaps they understand Italian?
This morning he got up and tried walking with the walker but it’s too wide for our house corridors. Bookcases line our walls, we have areas in our rooms we do different things in — we ignore the walls. This too makes for more furniture. He said we shall have to re-organize and re-think the house maybe.
I don’t know how I managed it but I did read my “Mapping Trollope” aloud twice and began to omit needless words, cut, rearrange and polish. Perhaps I got an hour altogether.
He was at his liveliest and most cheerful around the middle of the day. It was then he told me I ought to be addressing him “Mio superbo guerrier” in recognition of the hard battle he had fought and by going in for the surgery doing all that was asked for, by patience, courtesy, enduring it and then (partly by luck) getting to come home again.