Tuesday and Wednesday

ejourneys
Tuesday was errand day. My partner wanted to drive her truck, which she does about once a month.

Her driving itself is still competent and, as I told the neuro, instinctual. How instinctual? She had grown up in California. She had built her first car from junk yard components when she was 15-16 and had driven cross-country several times. Those cognitive pathways still seem to function well, at least for now. But I agree with the neuro that she should no longer drive her truck by herself. I keep my eye out for signs of deterioration.

She wanted to deliver a bag of leveling sand to the thrift store first.

There, she had a meltdown as I lifted the plastic storage box with the bag inside. She had wanted to reposition her cardboard pieces under it first. She was afraid the plastic would damage her truck's metal if dragged along it. I didn't drag, I lifted. We had several stops to make before closing time, so time was of the essence. And frankly, with our current battle over her heating coil, I wanted to do things my way for a change.

She screamed. She became hysterical. She grabbed my arms and tried to make me release the box. I held still, repeating in a soft voice, "[partner's name], please." I concentrated on remaining calm. She finally stopped and I carried the box with its bag of sand over to the thrift store supply room. A volunteer who had witnessed the meltdown informed me that the bag was covered in mold and would probably be thrown out.

At least my partner was getting rid of it. I thanked the volunteer, feeling contrite. My partner scolded me for my lack of teamwork. She still -- sounding quite reasonable now -- tells me I should have told her of my intention to lift the box before I had started lifting it. She feels embarrassed that a stranger had seen our "drama."

I asked her, "How would you describe your reaction?"

She said, "Blindsided."

I am guilty as charged. I am not above being passive-aggressive when I feel frustrated and afraid. And, yes, angry that my partner is compromising our safety and thinking nothing of it, even though I know it's her disease talking.

Her truck sputtered a bit going uphill as we headed to the next stop, which occasioned an unscheduled stop at the mechanic. Likely the truck needs a tune-up and will go to the shop on Friday.

My partner needed food and was back to being her pleasant self. I ordered just coffee at the local diner, having eaten enough before we left the house.

As my partner ate, I read my ebook of The Journals of Lewis and Clark to decompress. William Clark's journal entry for July 6, 1804 reported his sighting of "a whiper will perched on the boat for a Short time." He named the creek they were navigating after the bird.

I read of their rugged journey, of hardships interrupted by moments of beauty. Naming a creek after a bird. Spotting a white horse on an island.

I continued reading as my partner conversed with eyeglasses sales staff at our next stop. My partner had broken a pair of glasses when she had fallen in July 2011, after her disaster of a psychiatrist had prescribed the wrong medication after not reading her records. She wanted to know if the lenses could be placed in a different, sturdier frame.

They didn't have a frame that fit. We were referred to a jewelry store in town that might be able to solder the broken frame back together. That's a stop for another day. My partner made an appointment for her eye exam.

We next stopped to pick up her prescriptions. My partner sat on the floor in the middle of an aisle to count her pills. She returned to the pharmacist to confirm she was taking the Synthroid correctly. Then she had to use the rest room. I went in with her. It was a small rest room with two stalls, one for handicapped.

A small barrier separated the rest room area from the blood pressure machine. When my partner expressed a desire to check her BP, I told her I would wait for her by the machine. She agreed to meet me there. My own BP read 120/70, pulse of 74.

Seated right next to the machine, I would have spotted anyone coming to use it, even while reading.

I waited. And waited. My partner can take a long time in the bathroom, but my instinct told me that we had crossed into "too long." I left the BP machine for the few steps to the rest room.

It was empty. I still called her name.

I checked back at the BP machine. Nothing. I asked the pharmacist at the drop-off window to let my partner know, if she showed up, that I would be waiting for her back at the truck. Then I made a few circuits around CVS, aisle to aisle.

Satisfied that she wasn't in the store, I made my way to the truck. The truck was gone.

Our next stop was the supermarket, which was just across the county road. I was fairly certain she hadn't driven far. Years ago, before her functionality decreased to its current level, she often went off on her own without telling me where she was going. She once did it during a bike ride, departing spontaneously from our planned route, and in trying not to lose her I was almost run off the narrow road.

Years ago I had panicked when she disappeared, though I would eventually find her. At the time I had relegated it to her quirkiness and assumed she had never been taught a certain level of etiquette.

Sure enough, her truck was in the supermarket parking lot, though I couldn't find her in three circuits of the market including the bathroom. I returned to the parked truck, wondering if she had forgotten it and walked home. She had never driven off without me before, so I figured we had reached a "new normal" -- from now on I'll need to keep a closer eye on her. I had just dialed our home number on my cell phone when I saw her walking up.

She claimed she'd been at the BP machine. She also said she had wandered around CVS because she lost her water bottle. She particularly likes that bottle's shape so was upset; they don't seem to make soda bottles exactly like that one any more.

At home, she told me how overwhelmed she felt. She had realized it after her meltdown.

I gently suggested that maybe it was time to try another psychiatrist. She rejected the notion outright. "They're all pill pushers."

Late that night she claimed she had never agreed to have her heating coil turned off when we were both asleep; she accused me of forcing the issue. She still expressed interest in having someone from the firehouse tell her whether or not the coil was safe, but whether or not she’ll stick to that agreement is anyone’s guess. While she was asleep I took updated photos of the coil and some of the clutter to bring with me to the firehouse.

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Her new(er) coil, now connected to a heavy-duty orange 50-foot extension cord.

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The extension cord goes under her foam mat in the hallway and is plugged into the bathroom wall.

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However, the cord is very long, so it goes back beneath her foam mat (held down by a barbell weight)...

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... and is looped around the coat tree. Farther on is the front door, which she has blocked off with a blanket held in place by a large wood board and (out of frame) a crutch.

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Her clutter has been increasing again. She spends much of her day lying down in this and reading.

As soon as I got out of bed early on Wednesday afternoon, after a night of insomnia and finally some sleep, my partner regaled me with quotes from Thomas Szasz’s book The Myth of Mental Illness — of how the powerless have to scream to be heard and are then labeled as mentally ill. I think I see where this might be going.

After the all-member chat I gathered my photos and took off for the firehouse.

The firehouse was shut tight. All the doors were locked but one, which opened onto the fire truck itself and canisters of flammable chemicals. I called out, but no one was in the building. I shut the door as best I could, which seems to have locked it.

Our post office wasn't busy. Every so often I bend a postal worker's ear and I did so now, asking if they knew anyone in the volunteer fire department whom I could get in touch with. (They weren't allowed to tell me if the department had a PO box there.) The postal worker said she'd seen one old man who was a volunteer.

She asked, "Aren't they supposed to be manned at all hours?"

I said, "That's what I thought."

I said I'd try the health department next, and fortunately mentioned the road I thought it was on. Those offices had moved, they said. They pointed me to the main county location for several government offices. I headed there.

I turned on my digital recorder before I spoke with the information desk at the health building. Every so often the staffer was drowned out by ambient voices and echoes, but I remembered the gist of what I didn't catch word for word.

Conversation with county health department staffer, 20 Feb. 2013

ejourneys: I'm here looking for advice. I am the caregiver for an individual who has MS and mental illness. She's engaging in dangerous activities. I hold POA. I am not her legal guardian. I have very little in the way of legal power over her activities.

health center staffer: So what is it you need guidance on?

ejourneys: What help is available? Now, she's been to . She's been maxed out. She -- we had a DCF officer over, that was in 2009. He basically handed the case off to her first therapist. She's been to three therapists. She's now currently not seeing anyone, doesn't want to go right now. I can't force her to do it. I have no legal power. I am, however, the homeowner in which she lives. I was told by the Sheriff's office that an Ex Parte would do no good. Baker Acting would do no good. I'm looking for any alternatives that are open to me.

health center staffer: Um, wow. I don't actually know that there are any alternatives available other than what you're saying. I don't know why wouldn't be appropriate.

ejourneys: I don't know. Now, this was back in 2011 after her activities had included picking feces up off the street and storing them in the fridge, and overinflating her truck tires until she had a blowout. She is now refusing air from the HVAC system in our central heating and has set up a heating coil that's normally used as a fifth burner. She is also a hoarder, so there's a lot of paper trash there. She can be very combative and argumentative and it's just her and me, and I'm looking for any help that I can get in trying to enforce my responsibility.

health center staffer: Uh.

ejourneys: I have photographs if that may help.

health center staffer: Have you contacted Legal Aid or anything?

ejourneys: I have spoken with my lawyer. He has told me that my partner is not incompetent enough to . She can do her ADLs. She can dress herself, feed herself, no problem. It's just that the multiple sclerosis that she has, most of the damage is in her prefrontal cortex. So we've been told by a cognitive neurologist that basically she has MS that acts like traumatic brain injury. Plus the tests that she's had have pointed to schizophrenia and schizo-affective disorder.

health center staffer: I'm Wow. I would say DCF, but you've already spoken to DCF and it sounded like --

ejourneys: came over in 2009. At that point the house was in even worse shape than it is now. He said it was in danger of being condemned. When went into therapy at with her first therapist, , who has since left, basically closed his file and handed it over to . And then when was showing signs that pointed toward schizophrenia, she was handed over to . And at that point she was maxed out after a period with . Tried to get the clutter situation under control. When that couldn't be met, she changed the treatment plan and said okay, we're not going to deal with that, we're going to deal with communication. So that didn't do much good. And since then saw a private therapist of her own choice. Saw that person for a year; that person then retired.

health center staffer: Have you tried NAMI? [National Alliance on Mental Illness]

ejourneys: Yes. I've been to meetings of NAMI. What happens, and I haven't been for a while, admittedly, but the meetings I was at, basically they had a speaker come in once a month and do a presentation. There were no support groups. I'm currently -- I'm going to leave this with you -- what has helped me tremendously, at least in terms of my own sanity, is an online group called Caregiving.com. If anyone is looking for a caregiver support group, that is a wonderful space. Most of their services are free and they're free to join.

health center staffer: Most of our services are geared toward substance abuse and . you would know where to go for your needs. It sounds like you've already been there.

ejourneys: Oh, I keep trying. I'm still trying to figure it out.

health center staffer: [inaudible; suggests that the county mental health center might suggest a resource]

ejourneys: I've spoken with them about that over two years. I was in therapy myself there for two years. Saw because I was looking for coping tools. And basically, all that they could do was see us.

health center staffer: [inaudible; says the county really doesn't have what we need and that perhaps another county might have something]

ejourneys: I know. The neurologist we see is actually down in Tampa because the one up here told , "Yes, you have brain damage. No, we don't need a follow up." She didn't even follow up to find that had MS. had been referred to the [ICCD clubhouse], to which she doesn't want to go and can't be forced to go. Oh, well, I'll see where I can take it from here.

health center staffer: I wish I had something for you.

ejourneys: Well, the fact that there doesn't seem to be anything available is itself information. I can see where I can go from here. Thank you very much for hearing me out.



I drove back to the firehouse. It was still shut tight and unmanned. I consulted the phone book I keep in my car, but the only number related to fire was the emergency 911.

I tried calling the first place in my list of home health care agencies, since one of my potential strategies is to have someone come to the house just to be with my partner. No nursing care needed, just something that socializes my partner a bit and that perhaps can exert some influence, coming from a healthcare professional. This particular place had been recommended by the nurse I'd seen during my recent checkup. Maybe I could get one of their free consultations -- and pick their brains while I was at it.

The time was 4:45. The agency's outgo message said that no one was available to take my call and provided no option to leave a message. I'll try to get through tomorrow.

Another person to contact could be the MS support group coordinator. She was a nurse before she was diagnosed with MS and knows the system. Part of me is conflicted because right now the support group members are the only people my partner socializes with, when we go to the monthly meetings. In fact, my partner made sure earlier tonight that she put the next meeting down on her calendar. I've wanted her to feel free to interact with the group on her own terms, with minimal bias from my own views.

But it's a support group for people with MS and their families. I remind myself that I'm looking for answers to help and protect both of us.

So far I've respected my partner's wishes that she not make disclosures to her siblings until she's ready, but her insistence on using her heating coil crosses the line. As I commented on "The Dilemma," I am seriously considering going public with this (as in linking to my posts here on social media and using my real name) and seeing what I can do to get my partner's family further involved. We need an intervention. I had gotten some family cooperation back in 2011, to the point where her sister was ready to fly down, before contact dropped off. I am keeping my fingers crossed that they would be willing to help.

I also know that this would make me the bad guy, the betrayer, and I grieve at the thought that a relationship that is still wonderful in its own ways could be destroyed. Worse, it could be destroyed with the two of us left right where we are now: in an unsafe environment with no legal recourse and what fragile emotional scaffolding we've built blown to smithereens.

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