Nov 28 2012 in Caring for Partners by ejourneys
First the good news — the podiatrist didn’t find an infection in my partner’s toe on Monday. We are back to soaking it in saline solution, still (well, again) twice a day. Also good: the big bruise on that toe from her kicking (a startle response reported in this entry) doesn’t seem to be serious.
We celebrated with a delicious meal in a little Cuban restaurant nearby. Turned out they had key lime pie, which my partner loves, so we took home an extra dessert. She’d already had flan, which she hadn’t eaten in decades.
And half of my delicious veggie wrap was plenty for me! We took those leftovers home, too.
Next stop was to pick up more gauze bandages and tape, where I spotted the Moon rising by a utility pole:
I had already picked up the mail. My partner had been eager to hear back from the place where she had been hospitalized in 1982. She had written to them wanting to know her “final ‘Final diagnosis’” in her attempt to find the records for what she calls her MS “brain surgery.”
They sent her a brief reply saying that they no longer keep records going that far back.
My partner suspects a cover-up, since they had sent her records from 1982 as recently as last year — more than 300 pages in all, at no charge to us.
None of this surprises me — except maybe the “no charge” part. They really were quite generous.
On Tuesday we were both frazzled, but we ultimately got to a better place. My partner can have a startle response when the refrigerator cycles back on. She can throw — and I mean throw — clothes off her body and then grab them to put back on.
Our old way of applying Vaseline to her toes no longer works for her — now she wants little Vaseline peaks on the knuckles of her toes. And she doesn’t want to wait too long before she can submerge her foot in the water, so the water has to be heated just so.
But when the water is heated just so, her delays with the Vaseline make the water cool down too much and she’s uncomfortable. That’s why she insists on using the Pyrex dish balanced on her fifth burner and held in place with wood blocks (shown here). But now she no longer likes working the control on the fifth burner, which can make the water too warm.
And she doesn’t like having the water pail closer than about six feet when I empty out the Pyrex dish. She doesn’t want me to lift and carry the Pyrex dish to the pail 6+ feet away. Instead, I need to sloooooowly puuuuush the burner/wood blocks/extension cord/Pyrex dish combo toward the pail, and then lift the Pyrex dish to spill the water into the pail, where it gets saved with other gray water for toilet flushes.
She did, however, like that I tilt the Pyrex dish just so, to make minimal splashing noises.
On Tuesday, she wanted to be able to control her MP3 player while her foot soaked, meaning we had to reposition not just the player but the boom box that served as its speakers.
It’s not easy being asked to do something and then be interrupted every other word. My partner theorized and criticized while insisting that I show and explain to her, step by step, what I was doing. If I spoke, I couldn’t finish a sentence. If I didn’t speak, I wasn’t giving her the information she wanted. When I tried to call a time out to let us both cool down, she insisted she needed to soak her foot and have the music on right now! Once we got the music playing, she kept unplugging it so that it wouldn’t distract her if we had to tell each other anything. Then she told me I should know to unplug it during those times. When I said, “Okay,” she said, “No, it’s not okay!”
Whether soaking her foot or not, she also sits or lies on the floor (sometimes asleep) at the entrance to the kitchen, which means that she has constantly changing rules as to whether and how I can pass her, and how to let her know that I’m going to pass her. This is in an already cluttered house with few “paths” on which to move. First I had to call out to her to warn her. Then she decided I had to knock softly on a PVC pipe (that’s the method that had caused her to flail and bruise her toe on Thanksgiving). She then changed the rule so that I had to let her know in advance whether I would pass her on the left or on the right. That rule was replaced by my having to knock softly on the left or right wall. She then decided that instead, I had to touch her on her left or right shoulder.
I know to be careful. Years ago (before we met) she had swung around and punched someone who had touched her on her shoulder when she hadn’t expected it.
We didn’t have any kind of medical emergency. As caregiving goes, I’d say this was all small potatoes, but the kind of hot spuds that burn the skin on your hands when you try to pick them up. This was just frazzled craziness — the kind we can laugh about when the dust settles — with my partner’s “brain surgery” theories in the midst of it all. On Tuesday she said that the words “radical surgery” in one of Meg Christian’s songs must refer to the “brain surgery” that the doctors had used to give MS to Therese Edell, another women’s folk singer. (Women’s folk music is on my partner’s MP3 player.) She blames censorship for the non-mention of MS in her Toxic Parents book — as in (a) she was abused, (b) the abuse caused psychological problems, and (c) the hospital treated her problems by performing X-ray brain surgery on her, that (d) gave her MS.
Tuesday had been one of those five percent days for me. I’ve gotten to the point (with years of work) where I can keep my cool 95 percent of the time. On Tuesday my partner had insisted I cut my breakfast short because she needed to soak her foot right now! — never mind that her sleep and other needs can skew her soak schedule by hours. After I had recovered from last month’s bad cold due to severe sleep deprivation, I had let her know that I couldn’t wait any more for her to be ready in the middle of the night; she could come get me when she was ready instead. That way I could at least get some sleep. So far, that’s worked out.
But Tuesday was one of those days without a moment’s peace — to eat or check email or just to think. My own lack of food interfered with my concentration. And no sooner could I focus on something than I was interrupted all over again and had to try to refocus. Lather, rinse, repeat.
Part of my difficulty lay in my own quirky problem. A while back, on the Hot Topics segment “I’m So Over…,” I said that I was so over two habits that I was trying to break. One was picking at my cuticles as a stress response. I’m happy to say that I’ve gotten control over that.
I’m still working on the other one, which is a weird kind of OCD that hit me about three years ago. It’s obsessive proofreading of my own emails — not the proofing that I do professionally, but the kind that is downright ridiculous.
Stress brings it on, particularly the stress that comes from being interrupted as frequently as I am. I find that I try to rush through the proofing as though I’m trying to outrace the approaching locomotive that is my partner. My reading becomes like a record that keeps skipping over the same few words and nothing seems to stick. It’s as though all the sentences are flying away from each other (not visually but in memory) and need to be brought back into line.
It’s gotten to the point where I’ve obsessively read and re-read not only my text message but everything — the email address, subject line, even the date and time stamp my ISP inserts automatically — moving my lips to boot. Holding my breath and holding my hand over my mouth as I read helps calm that activity down. Leisure reading isn’t a problem if I have a bit of calm so that I can concentrate. And I can focus while writing.
But as my partner decompensated, I did, too. When I brought it up in therapy, my therapist insisted it was probably an eyesight problem. (On balance, my therapy had far more positives than negatives. This was one of the negatives.)
Over the years I’ve been able to tame it — except on days like Tuesday. On high stress days like Tuesday, it’s a royal pain.
I can handle that, too, and I have in the past. But on Tuesday my partner’s constant harping on top of everything else was the last straw.
That meant that I finally yelled at her during The Great MP3 Migration to “Just shut up!” Once she did, I was able to figure out that the reason the music wasn’t playing was because she had accidentally locked the player’s controls.
I then stepped away for a minute, envisioning smoke curling up from my ears.
I did not feel guilty (one of therapy’s many positives). I felt pissed. But I had gotten my yell out of my system. Then I could modulate my voice back to its usual neutral/numb in response to her chaotic energies. I know that she is “frustrated and scared” about her MS, and she has been able to say that for herself. I suspect that her frustration and fear, brought about by the hospital’s letter, underlay Tuesday’s behavior. The abuse from her father and his recent death also figures into that.
Minutes later we got through the soak– the “20-minute” soak had taken us a mere two hours — and then come hell or high water I needed a salad. When my partner regaled me with more of her theories I let her know that I simply could not concentrate and could not listen to her until I’d had something to eat. And I needed to eat it uninterrupted.
She was pretty good about that. She interrupted me only twice. The first time was to explain to me that she was keeping her shirts thrown over the chair near the kitchen and her pants thrown over a particular mini-wall of clutter not far from the chair (the “before” shot in this entry, because that pile’s gotten large again), and I should make a note of that.
The second time was to show me her alternate foot soak set-up. She said she didn’t want me to go without food when I needed it, when she was sitting in the kitchen entrance. So she’s moved her set-up to the bit of linoleum just inside the front door.
To my mind it makes the logistics more daunting, since the kitchen sink comes into play and we heat the water in the microwave before it goes into the Pyrex dish. (We don’t use our stove burners and actually have the stove turned off at the circuit box because of the clutter.) And normally I can eat something if I feel hungry while the soak is going on, because I am already in the kitchen.
Tuesday, however, had detracted considerably from our already abnormal “normal.”
But I was thankful that my partner recognized a need of mine once the dust had settled, and brainstormed so that we could work together. I said the linoleum inside the door was a good Plan B and thanked her.
She wanted it to be Plan A.
We used it for the next soak, problem-solving along the way (like transporting the microwave-heated water by thermos). By that time we were both being very mindful and solicitous of each other.
Late Monday night, hours after I had taken the photo above, my partner called me outside to look at a huge ring around the Moon.
The full ring was too large for my camera’s viewfinder; I could barely fit it in my own field of vision. That bright dot just inside the ring above and to the left of the Moon is the planet Jupiter.
After I went to bed I kept wondering what the Moon, its ring, and Jupiter reminded me of. Soon I was back at my computer, pulling up an image of the hydrogen atom.
In the analogy, the Moon plays a proton and Jupiter plays an electron. The cool thing about hydrogen is that it’s the most common element in the universe and its formation dates back to the Big Bang.
My partner wanted to know what I was doing up again. That launched us into one of those rarefied discussions where her brilliance outshines her cognitive disability. It was the kind of discussion we used to have much more frequently — free of conspiracy theories, paranoia, and emotional distress.
We had fun, too. While we looked at hydrogen atom images, she asked, “Can you put two of those next to each other? Can you turn that one around?”
Pretty soon we came up with this:
During a lull on Tuesday I contacted the coordinator of the MS support group that meets near us. She emailed back that their next meeting date is a week later than usual, and added that my partner and I are both welcome.
My hydrogens are smiling.