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Falling [Sep. 20., 2016|11:50 am]
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Usually I'm impatient for fall, but this year I'm happy to have some summer left. Back in April, we asked monshu what his recuperation goal was and he said, "To sit on the back porch on my birthday drinking tangerine juice with friends." Mom even made a gaudy poster of it to hang in his room at the acute care facility. That didn't happen; it was more than two months before he was able to sit outside at all and another six weeks before he could sit outside on his own porch. (By then he'd swapped out mango-orange for tangerine juice and we still haven't had any friends over.)

He's become so much more sensitive to cold since his dramatic weight loss that what's comfortable outdoor temperature to most people isn't to him. He seems happiest close to 30°C. Below 25°C, his tolerance seems to max out at about 30 minutes--and that's even with him being bundled in a terrycloth robe. So if missing out on crisp clear mornings for a couple weeks more is the price I pay for the Old Man being able to sit outside for a while before the long cold winter, so be it.

I am getting impatient about preparing the garden for next year, though. It's been too hot and dry lately to consider doing much transplanting, so everything which hasn't made it into the ground yet is still on hold. That includes the bulbs I got or dug up (and hopefully didn't ruin trying to dry out and store), which can't be planted until nighttime temps drop below 10°C, the price prairie plants and such that a neighbour shared with me, and whatever miscellaneous purchases I've made.

The other factor is waiting for monshu's input. He's got definite ideas about the front garden and, with Scooter gone, we have a rare opportunity to do exactly what we want. I'm hoping to drag him out there to make some decisions so I can begin planning the work. (He'd like me to move around several sizable shrubs, so this isn't a small job.) At least he was able to give me feedback on the smoketree which licenced me to hack the hell out of it. It's been growing out more than up lately and something needed to be done. I've taken off a dozen branches and will have to remove more in order to shape it properly.

For the time being, I've abandoned both the hellstrip and our garden plot, which is now a solid mass of oregano and lemon balm outside of the chives along the front fence. The autumn blooming clematis is also well out of control, but I want to wait until it's totally spent before hacking it back. I was very pleased the GWO got to enjoy it in full bloom at least for a few days, especially after missing out on everything else.
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Increasing normality [Sep. 14., 2016|12:35 pm]

A couple days ago, I wrote:
I know there will be setbacks. We still don't know if his nutrition is adequate. At some point, his dressings will probably fail catastrophically. He might scald himself or catch his tube on something or even fall.
Later that day, he did fall--sort of. And in doing so, he did catch his tube on something and pull it out more. And today his dressings failed, though we caught it before it got out of hand.

So some of the bad stuff I foresaw is happening, and it's not as bad as I thought it would be. We had to take him to the ER yesterday to have the drain looked at and the surgeon decided just to go ahead and remove it. In a week, they'll check to make sure that's working out. We're still hoping to get better dressings that will be less prone to problems. We had a running battle with the nursing home, which kept trying to substitute a much cheaper wound pouch for the proper fistula management system his surgeon wants. Now that he's out of their care, we're hopeful the home health agency might succeed where they failed. (Mom kept bargaining with the ER resident for a more precise wording of the surgeon's orders in the discharge instructions.)

Last night I also served the Old Man notice regarding managing his care with the words, "If you're well enough to read all day, you're well enough to start doing this for yourself again." I can barely stand to make appointments and deal with providers for myself, so I don't think he quite realises what a royal pain it's been to have to do all this for him as well. I was willing to give him a pass when he was in the home--who can concentrate with all those interruptions and distractions?--but it annoys me to think of him idle at home all day and still expecting me to take time away from work to make calls to people.

As I suspected, he was up to the challenge (which is how it is he's now scheduled to see the surgeon again in a week). Now I'm beginning to wonder how much longer before he can take back some of the work of running the household. His excuse before was the lack of a secure connexion, since he was reliant on unsecured institutional wifi. But at home, his phone is no more or less secure than any of our other devices. Moreover, we could easily bring him a laptop to do the finances. He hasn't said he's up to it, but I'm tired of waiting for him to volunteer so it's time to force the issue.
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164 days [Sep. 12., 2016|03:38 pm]

monshu is home. He came home Saturday and the honeymoon isn't over. As you all may recall, the weekend after he was discharged last year was one of the most wretched of my existence; I can't recall ever being so exhausted and strung-out. So I was bracing for the worst this time and...it hasn't happened. He's getting around fine on his own. There have been no accidents or spills. Well, he did yank his bag while getting out of the shower and start leaking a little serous fluid, but Mom and I got him patched up quickly and everything seems fine.

In the meantime, well, he had a shower. Can you imagine what it must be like to finally shower after nearly half a year of nothing but sponge baths? He was out of bed at least a dozen times yesterday without me having to help him once. He even cooked his own breakfast. His legs are still weak and he can't get by without the walker, but he's not nearly as worn out by the end of the day as I expected. Indeed, he's often up later than I am.

And I'm not as destroyed as I thought I'd be. Mind, that's not to say I'm not tired after helping him with tasks AND helping Mom AND getting the regular chores done, but it's not bone-tired. I actually sleep at night (moving to the back bedroom helped) and I'm not ready to spring from the bed at the slightest noise. Last night I actually slept without my phone within arm's reach for the first time I can remember since this all started.

I know there will be setbacks. We still don't know if his nutrition is adequate. At some point, his dressings will probably fail catastrophically. He might scald himself or catch his tube on something or even fall. But every day that goes by, the possibility retreats slightly--along with the prospect of him being readmitted.
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Mixed [Sep. 2., 2016|12:25 pm]
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One of the worst things about discussing monshu's care with those around me is the tremendous amount of experiential knowledge many of them are lacking. This is not their fault; I've been through a similar situation before with my ex and even so I was very naïve about all sorts of aspects of a long hospitalisation. Some things you can try to explain, but that takes time and energy you don't always have.

All of this most commonly manifests when I talk about bringing him home. Understandably, the usual response is, "Yay! You must be thrilled." What they don't understand is that just because insurance will no longer pay for someone to be institutionalised doesn't mean they're able to care for themselves and that the excitement you feel at finally having someone where they really want to be is tempered by the massive increase in your own responsibilities. For months now, I've only been expected to manage his care. Now I (along with my mother) will have added to that responsibility for providing that care. Feeding, cleaning, laundry--none of this will be taken care of by something else (unless we're willing to pay out of pocket for that). The days of being able to go into work with a clean conscience and retreat to a quiet cave at home are gone--and might never return.

So my own feelings are decidedly mixed, and it's hard to express that without coming across as selfish or ungrateful. Other caretakers understand, but not everyone in this world is a parent or has had to provide care for a relative or friend. The ones who have are immediately simpático; sometimes I wish I could talk just to them and leave everyone else out of the loop.
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Ashes to ashes [Aug. 31., 2016|03:18 pm]

Again all expectation, monshu and I gave our interview yesterday. A week before, Turtle had told me about how the reporter who'd interviewed her was looking for someone "who plans to be cremated and has discussed it with their family" to flesh out their trend piece and she knew we wouldn't be shy about talking. I was hesitant to put myself forward, given how unsettled things have been, but it seemed harmless enough.

Naturally, the reporter contacted me Monday of last week when we were totally focused on bringing the Old Man home. She wanted to talk to both of us and I told her we couldn't possibly set something up before the end of the week and she should probably find someone else. She must not have had many leads, since she said she'd talk to her editor and get back to us. Instead of coming home, monshu landed himself back in the hospital instead, so I didn't even broach the subject with him.

By this Monday, though, things were more settled. He was in a quiet private room and getting lots of rest, so I raised the possibility and he agreed. That was when I expected Tuesday to be a slow day; it wasn't, and after a constant stream of visits (including one from the physical therapist), I figured he was done for the day. But he gave the go ahead after all.

Trying to get connected was a ridiculous process. Although we'd been texting on my phone, I'd asked her to call the landline to the room (I had to ask the PCT for a phone, since none had been provided) but then discovered it didn't have a speakerphone option. I gave her the GWO's number and it took two tries to get a call through for some reason. But I consoled myself with the thought that, in the course of her job, she must have had much more trouble than that contacting someone for a story.

Her questions were basically what we expected, as were our answers. monshu did open up a bit more about preparations for his father's burial and how it had pushed him away from traditional funeral homes. He also revealed that he'd be open to a green funeral if only it were more convenient. (Apparently there's only one place licenced to do them in Illinois and it's way the hell out in the burbs.) I babbled a bit about not having the traditional family plot any more. She was, I think, a bit taken aback about how easy it was for us to talk about the subject (which brought to mind that terrific exchange between Mozhu and her friend about her father's demise: "Have you ever talked about things concerning...the end of life? "Oh all the time!").

Afterwards, I asked Mom about her wishes. I thought she might want to be buried in Calvary alongside her parents, grandparents, and younger brother, but she didn't even mention the idea in order to dismiss it. She's favouring cremation, too, and we both talked about the problem of not having a good spot to lay our ashes. This led to a discussion of Lake Carlotta, the vacation home west of town she still has a 10% share in, and how it's not clear how much longer it might stay in the family. (Upkeep on it runs about $20,000/year, and it's unclear if a tenth of that is something my sister's family can afford indefinitely.)
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How not to make my day [Aug. 23., 2016|11:59 am]
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So, the run-in:

I was waiting for the elevator. There was an older man in an electric geri chair and a younger woman with him. She was wearing plastic gloves, so I thought she was a nurse or CNA despite not wearing scrubs. I greeted them and the man engaged me in conversation. "I'm on four. Where are you staying?" I explained that it was my husband who was in residence; he took that in stride, like most people do.

In any case, the elevator arrived (after I showed them how you sometimes have to push the button again to get it to open) and the man manœuvred the chair into it. I started to step in, but the woman said, "Is there going to be enough room? I need a certain amount of room to do things." This kicked off a confusing exchange between the two--the man encouraging her to come in, the woman protesting, until finally I muttered, "This is ridiculous. I'll take the next one" and walked out.

She stepped in, turned to me, and said, "It's interesting that you call it 'ridiculous' when you're gay." It took me a moment to realise what had even happened. I stepped forward and held the door. "Did you just make a thing of me being gay? Why would you even do that?" Turns out she felt personally attacked by my comment (even though it was directed at the situation, not any particular person) and felt--she explained--fully justified in attacking me in return. "I have OCD!" she screamed. Fine, okay, but then maybe have a plan for the utterly foreseeable event of having to share an elevator? And maybe communicate that to the people around you so they have some idea what the hell's going on? If she had simply said, "I'm sorry, I don't feel comfortable sharing an elevator," I would've been like, whatever, and waited.

Instead, she created a situation where she felt she had to say, "I'm not homophobic!" because she'd just demonstrated the opposite. I get that she was feeling embarrassed and uncomfortable. But when you've spent all of a minute with somebody and your mind goes right to, "How can I use the one thing I know about this person against them?" that doesn't say much for your character, does it? The poor guy in the chair was trying to calm things, but neither of us was listening. I could see that nothing I might say would make things better for anyone, released the door, and then stood there fuming, hoping that would be the last I would ever see of her in my life.
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Endless [Aug. 23., 2016|11:36 am]
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Yesterday sucked. So did much of Sunday. If I were to plot my psychoemotional trajectory for the last several days, it would've peaked some time Saturday night (probably watching the moonlight dance on the waters at Berger Park after a lively meal at Sabri Nehari). The low point is harder to pinpoint; maybe leaving the care facility on the verge of tears yesterday evening?

How did I reach that point? Saturday's evening meal was much spicier than expected--everything seemed to be spiked with chiles except the lassi and the naan--so I got to sleep late and didn't sleep well, leaving me strung out on Sunday. The original plan was to come by in the morning and get the Old Man out in the open air for a while. (Sunday is the one day he isn't scheduled for therapy.) But all he wanted to do was sleep. That's all I wanted to do either, but I didn't have a bed to do it in. (I found a couch in an unoccupied meeting room on the ground floor, but no sooner had a lay myself down before a stray jet fighter from the Annual MilPorn Extravaganza flew over.)

In all, I was there for five hours, during which monshu and I hardly interacted, he never got up, and he hardly ate a thing. I left in a state of exhaustion and annoyance. My plans for the afternoon--I'd hoped I might be able to spend an hour or two at the Glenwood Arts Festival seeing my friends--got scrapped, since all I had the energy for was coming back home and crashing. Besides, I had still had chores to finish. That gave me a certain sense of satisfaction and I felt better by bedtime (balanced out, however, by a phone call from the nurse that monshu was running a slight fever).

Next morning was a different story--achy, stuffed-up, bowels acting up, etc. It felt like the onset of a severe cold, so I called in. I didn't want to sleep too much, lest I throw off my schedule, but I didn't accomplish much beyond paying a few bills (including the insurance on our, which I ran over to the office for, since it was due that day), and picking up a prescription on my way in to see the Old Man. Not much change: still a slight fever, still not interesting in eating anything but a few pieces of watermelon. Nonetheless, I stayed for nearly three hours, waiting for my chance to coax some broth into him, before I gave up.

Before I even got there, though, I got a call from the administrator saying that our insurer had denied our request to stay through until Thursday morning and the next two days would out of pocket. So the beginning of my visit was spent in his office trying to get an estimate for our pharmaceutical expenses in order to head off nasty surprises. (Thank the gods he got the shot at the oncologist's or there'd be no way we could afford this.) While waiting for the elevator, I had an unpleasant run-in with the companion of another resident, one that left me shook up for hours. I left, as I already mentioned, on the verge of tears. All I wanted was to be home and the bus stubbornly refused to come while some jerk sat in the bus shelter and smoked so I had no place to sit down.

We're trying to make arrangements to get monshu home, so there's an awfully good chance yesterday won't be the worst day I'll have this week. So nerve-wracking, relying on people you hardly know to do what they should so you and yours aren't suffering in the days ahead. And so hard to plan expenses, with no real idea what the timeframe is and what will and won't be covered. I've found myself saying, "When this is all over..." and then catching myself, because this won't ever be over. At some point, it will be for monshu, of course, but then I'll be left with a crushing load of grief on top of the responsibility for managing all the finances and hospital affairs. How do people deal with that? Guess I'm soon to find out.
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All wet [Aug. 18., 2016|11:24 am]

Awoken a bit early this morning by fast-moving thunderstorms. Briefly, I thought I might want to stay home and let them pass and began to plot out what I might do to pass the time (such as ironing), but they were over in an hour. Mercifully, they brought cool air in their wake. I found myself getting spattered on the walk to work so I detoured through the alley. I normally avoid it this time of year due to the lack of shade, but it was still overcast. In fact, the sun didn't come out until after I reached Evanston, creating one of my favourite effects: bright sunlight contrasting against blue-black cloud cover over the horizon.

I think I've mentioned before how much the cat has mellowed with regard to storms. Even as I heard thunder rumble, I could still feel him grooming himself at the foot of the bed. (At least, I think I felt that; I've been mistaken before.) Even during the height of it, he followed me into the bathroom for buttrubs and then set himself quietly down on the chenille rug. It's nice--for a change--to be able to pet him as much as I like without having to worry about him turning on me and biting, even if he doesn't purr.

It could be a hectic evening at the home as I attempt to touch base with the social worker who's doing monshu's discharge planning as well as the doctor, the friend of a friend who might handle some of his home care, Turtlewife, and whoever else might show up and need to chat with me. I hope the Old Man is engaged; I feel like he should be taking a more active role in his care than he is, though I recognise that it's only by mentally checking out to a certain degree that he's able to put up with his situation at all.

I still have very mixed feelings about bringing him home, though at least the panic has faded. As far as I can see, he's not substantially more able to care for himself now than he was three weeks ago. That may change if he's no longer hooked to an IV 24/7, but he's not currently eating enough to sustain being off TPN and seems rather uninterested in doing anything about that. (Yesterday evening he finally resisted my nagging, saying, "Stop worrying, I'm going to eat" and I wanted to yell back, "When?") You'd think better food would make a difference, but he brushes off my offers to bring him something more appealing than institutional food, so who knows how much that will change at home.
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One more revolution [Aug. 15., 2016|10:55 pm]
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In possibly the least auspicious beginning to one of my birthdays ever, my first phone call wasn't from the pharmacy robot (as I first suspected) or a well-wisher (my second guess), but a collection agency. Seems my doctor's office hasn't the patience to wait for my insurer to reprocess all our bills for the year until they get it right and I'm not sure I blame them. (Naw, I kinda do.) On the other hand it featured this exchange:
"Can you verify your zipcode and date of birth."
"My zipcode is XXXXX, my date of birth is X/XX/XX."
"So today must be your birthday."
"That's correct."
"Happy birthday."
"Thank you!"
If I'd gotten out of the house when I'd planned, I would have missed the call entirely, but I hadn't slept well and (relatedly?) I'm still dealing with some GI issues from last week. Getting down to the facility to see monshu took a whole hour: half-an-hour to wait for the bus and then another half-an-hour for it to make its way down to Lawrence with all the old and infirm getting on and off at every stop. When I got there, I found him waiting to be cleaned up by the CNA--who, it turns out, hadn't been told he needed assistance. Neither had his nurse. He had no idea who he'd told, in fact, so there was no way of knowing who'd dropped the ball. I left frustrated with both the staff's sloppiness and with him for tolerating it.

My first stop was Cafe Meinl on Southport, which managed to disappoint me in a myriad of small ways. My coffee was badly mixed. (All the syrup was on the bottom.) My eggs were overdone. My waitron was training someone and couldn't be bothered to give me the check or run my card. My guts were still acting up. And Southport itself has changed so much from the street I first fell in love with twenty-two years ago. When I told my father, he asked, "Changes for the better" and I said, "It's not for me to judge, really. I don't live in Lakeview. Maybe they're very happy to have a Gap there."

Stage two was Bookworks on Clark Street. The moment I learned that they were closing and today would be their first 50% off day, I knew where I wanted to spend my birthday. But I was fighting a sense of melancholy the whole time I was scanning the shelves. And even having told myself I was going to be as generous as I could when it came to my choices, I still found it hard to find things to buy. My customary limit of $100 was in place, but in the end I barely spent a quarter of that.

Meanwhile, the sky continued to threaten rain and I'd left my umbrella at home, lulled by radar projections which showed the bulk of the storm remaining comfortably south of us. At least I finally had quick connexions taking the bus back to share my birthday torte with the Old Man (who this time was just after getting cleaned up) and the droplets held off until I was back at home. On the way, I'd cobbled together a dinner at Revival on Granville with the couple across the street and their straight nephew, plus JB (coming straight from work and looking the worse for it) and Diego.

There were a few missteps in this meal, too, bu they're much easier to take when you're distracted by good company and pleasantly lit on a fancy g&t. The server's easy charm only fed our spirits and I had the rare pleasure of seeing one of my friends explain slashfic to a whole table of people unfamiliar with the concept. We left in high spirits and I arrived at home just in time for a comedy of errors with my phone: First Dad called me while I was going through messages and I missed it. Then he called my sister by mistake, who informed me of this via text. Then he called back again while I was replying to her and sent his call to voicemail by mistake. He finally switched phones and called from the landline.

So now the frustrations and discomfort of earlier in the day are all but forgotten and I'm left with the pleasant afterglow of a good meal with friends and well wishes from a host of people. That's all it really takes to make me happy any more. The single best thing about getting older is finally getting your expectations calibrated.
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Digested but not forgotten [Aug. 10., 2016|03:29 pm]

As much as it came close to being a slog at times, as I neared the end of Search sweet country, I began to feel a bit farklemt at the thought of having to say farewell to the various characters. I was in a Thai restaurant at the time and wondered if I should wait for someplace a bit more quiet and private, like home, but I had only a few pages at that point and waiting for me at home was a hurried dinner and a condo meeting.

About halfway through, I figured out that the complicated relationship between Kofi Loww and Adwoa Adde was the narrative thread on which the novel hung and, when that resolved, I knew we'd entred the denouement and the rest of the chapters would simply be tying up the stories of the rest of the cast of characters. The conclusions to their stories are satisfying without being too too neat and Laing ends on a hopeful if melancholy note. The heavies retreat into the background, the ordinary people get on with their lives, and Accra abides.

At times the writing veers close to cliché (particularly the way he treats abstract qualities as concrete objects and in the recurrence of metaphors rooted in Ghanaian cuisine), but at its best it's still vibrant and fresh. Despite being published forty years ago, the work doesn't feel especially dated, but I wonder how much that's due to my basic ignorance of Ghanaian popular culture (so that a reference to a popular song or a style of dress would be equally foreign to me even if it were current). I'm going to be curious to look back in a year or so and see how much of it sticks with me.

So what next? I'm reading Woodrell's harrowing Outlaw album while I decide. I'm leaning toward Yaşar Kemal's sequel to İnce Memed, which should be a quick read and appropriate to my state of mind. There are some other things in the hopper--Atwood, Hulme, Maraire, the balance of Os Maias--but I feel like they may be better suited to cooler weather.
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