Communications

ejourneys

Communications

ejourneys
(From the Community Caregiving Journal 3-word prompt Pretend, Practice, Promise.)

1. Written word

I have begun to put a promise to myself into practice. It is slow going, but it is no longer at a standstill.

"Yes, I'm finally writing back! I'm sorry it's taken me so long, but for me it's mainly been a question of just what to say and how to say it."

I hadn't written back to these people in years and I've known them for almost 30. I had read their annual letters about their lives, their children's lives, and now their grandchildren's -- and then had placed those letters aside.

Like several others.

Some of my replies will be only short notes. Others will contain more detail.

"About a year ago was diagnosed with MS, but its main damage is in her prefrontal cortex. This made it very hard to diagnose, and we've been through years of tests, specialists, and misdiagnoses. Her current definitive diagnosis is MS that acts like traumatic brain injury."

That's not the hard part to report. My partner and I agree on that information. For some replies, my letter will stop about there.

But I've known these people for a long time -- from long before my partner and I had first met.

" perspective differs from mine in several respects. I've held off much of my correspondence and have engaged in much self-censorship out of respect for that difference. My feeling is that her perspective arises mainly from her neurological damage."

In every encounter or answered letter I face two choices: (a) be honest, or (b) be silent. For a long time I've been silent. The third choice, (c) pretend, is unacceptable to me.

Probably because, for a long time, I had pretended to myself that things couldn't be as bad as they seemed. After all, my partner had kept insisting that she was okay. And I had grown up being told that so much was just my imagination and that I was overreacting to things. So what made this any different?

Part of being a caregiver was learning to trust myself and my instincts again. I had worked hard to do that in the past. But my partner's disorder was another layer of that proverbial onion. I had to take old lessons learned (really, older "lessons" unlearned) and relearn them within a new framework.

By the time I was done writing I had a three-page letter that still had some of the "newsy" qualities that one expects in year-end missives. This time, the year-end letter came just from me. For now, at least, I replace our old tradition of sending letters together (discontinued years ago) with a new one of sending letters solo, so that I can express what I need to express.

This time I'm also including Caregiving.com flyers. They are my go-to icebreaker. :-)


(A hand sculpture I did from pulped paper years ago.)

Part of my own difficulty lies in trying to gauge people's responses. One friend had told me, once I spoke up, that she had wondered whether I had even noticed my partner's strange behavior because I hadn't said anything about it. I explained that I wasn't going to call my partner out on it and publicly embarrass her, but that I had indeed noticed her behavior and had been noticing it for quite some time. In that particular case my partner had insisted on sitting on the floor at my friend's house and had begun dry-brushing her teeth in the middle of a conversation, with the toothbrush she carried in her fanny pack. Whenever I had pointed her behavior out to her, usually after we had gotten home, she had rationalized it.

That's basically been my modus operandi: to let my partner simply be in the world. And, when called for, to pick up the pieces.

But people do notice. There's a reason a former neighbor of ours had told me, "You know, she's only going to get worse." There's a reason a friend of mine had warned me, five years ago, "If you go down, you both go down."

The short note that I want to send is to someone who had met my partner only once, at a time when my partner had been on her best behavior. I don't want to say much more than the basics because I want my partner to be treated with the decency and respect she deserves and without stigma attached.

I don't want my disclosures to create what I've taken to calling The Cootie Effect. My partner can be articulate and charming and seem as "normal" as she does eccentric. She aches to be helpful and to be valued; who doesn't? I don't want my disclosures to close off potential avenues of participation for her. I want her to feel freer to interact with people, because isolation makes things worse -- for both of us.

And yet, I want to be fair. To her. To me. To the people around us. It can feel like trying to balance on a thin, unraveling thread.

2. Spoken word

On Christmas Day my partner thanked me for not taking her to the hospital, back in October of 2011, when she had overdosed on diphenhydramine (Benadryl).

She doesn't want me to take her to the hospital if she overdoses again. She is afraid they will keep her there and perform more "surgery" on her brain.

I did not promise anything.

I said, "I want you to write your wishes down for me in a letter, and I want you to sign it."

She liked that idea, although she has not written the letter yet. (I am not holding my breath.) Despite what she had said in October of 2011 ("I have considered that, and I think that doesn't stand up very much"), she now believes that a different diphenhydramine overdose -- not MS -- had been the cause of her 1982 hospitalization.

She doesn't recall overdosing back in 1982, but she says the overdosing itself had caused amnesia. She had "remembered" -- though not until after her 2011 overdose -- a bottle of pills whose level had dropped. She now says the hospital had deliberately given her MS in 1982 because they knew that she had overdosed on diphenhydramine and therefore thought that she had been suicidal -- and that giving her MS was their way of "fixing" her.

Now she is saying that her neurologist and his staff knew about her "brain surgery" and felt guilty about what happened 30 years ago, so they did something in her most recent MRI that helped alleviate her back problems from scoliosis.

I have fallen into the practice of holding my tongue. I do not pretend to believe her, but I rarely challenge her openly. Because in the end, those words don't matter.

They don't matter because despite the fact that we had spoken for more than 90 minutes on the day after her overdose in October of 2011, she had completely forgotten our conversation.

Some days after that, she was angry with me when I gave her the transcript to read, because she thought that I had kept that information from her. She had not realized that she had overdosed at all.

Whereas I thought she had remembered our 90-plus-minute talk.

She doesn't want me taking her to the hospital, the way her former partner had taken her to the hospital back in 1982. Just give her a few days, she said. Make sure she has enough water.

I did not promise anything.

Some day I might face the choice of whether or not to bring her in. It might be an overdose. It might be an exacerbation. It might be anything.

On that day I will have to listen to my gut.

Even after reading the transcript (which she says she's done), my partner tells me I've got it wrong, and that she had not taken 200 mg. of diphenhydramine in October 2011.

But I have the recording, in which she admits to having taken four green pills containing 12.5 mg each and six red pills containing 25 mg each.

She can sound much better, but her halting and disorganized speech pattern is not unusual. She sounds worse the more stressed she feels. Her overdose last year had come two months before she was officially diagnosed with MS that acts like traumatic brain injury.

When I remember and when I have the chance, I record our conversations now. When I feel emotionally strong enough I transcribe them. Both activities take practice.

It's not the button pushing that takes practice, or the typing. It's bringing myself to do it.

Otherwise, part of me wonders: Did this really happen? Did I really hear this?

The digital recorder does not pretend.

I posted this (along with the full transcript) on a friends-only diary on October 4, 2011:

My partner was talking loudly enough in her sleep for me to hear her through my earplugs. I took my earplugs out and asked, "What?"

Her words were badly slurred. I couldn't understand what she was saying. When I thought I could hear her correctly, her syntax was way off, and I couldn't understand what she meant.

I rushed to the studio and got my digital recorder. I haven't tried to transcribe from that conversation yet; the transcript below is the best quality sound and contains probably the most important information.

She was unsteady on her feet as I helped her to the bathroom, and she would have fallen if I didn't hold her up. She sat down hard on the toilet seat and had to stand up again to pull her pants down; for a moment I didn't know if she was going to just pee right through them. But she was aware enough to take care of her hygiene.

Getting her back into bed proved difficult. I had to convince her to move to where she could lie down on the mattress; she thought she was there when she wasn't. She asked for water, which I got her; then she had to pee again. Then I helped her back to bed.

A couple of times after that she began talking, I asked her what she was saying, and she accused me of talking and keeping her up. Finally she fell asleep, I could hear her snore, and I quietly left the bedroom.

She had an appointment with the podiatrist, which I cancelled.

Later she awoke and was steady on her feet. We started talking in the studio, and I surreptitiously turned on my computer recorder, whose mic isn't as sensitive as the one on my digital recorder. When my partner left the room I grabbed my digital recorder, which I held as I followed her through the house.

The transcript represents a shade over an hour and a half of talking. My partner speaks very slowly, with frequent, long pauses. Among other things, I learned from her that last night, in an attempt to sleep, she had taken ten pills (basically generic Benadryls, in two different strengths of diphenhydramine, for a total of 200 mg of diphenhydramine), followed by a half-bottle of beer, followed by what I measured out to be 5.33 ounces of brandy.


Excerpt from our conversation on October 3, 2011

ejourneys: So, are you saying you took four of those last night?

Partner: That's correct. There were two things that looked like this.

ejourneys: Right.

Partner: And I tried this. I tried one of these and, uh, 'cause this would be one diphenhydramine pill. So I, at first I had this, plus a little red lozenge.

ejourneys: So, uh, the two pills that you took had 500 milligrams acetominophen, 30 milligrams pseudoepinephrine hydrochloride, 12.5 milligrams diphenhydramine hydrochloride.

Partner: Right.

ejourneys: And that's per pill, and you took two of those.

Partner: Right. The standard, I've been, I figured out that, um, one diphenhydramine pill doesn't work for me. Uh, I've only ever tried that for allergy stuff.

ejourneys: Right.

Partner: And --

ejourneys: And you said on top of that, you took one of the red lozenges?

Partner: No, more than that. Because -- okay, the small set of two?

ejourneys: Mm hm.

Partner: Before last night, there were three sets of two there.

ejourneys: Okay.

Partner: So I took one of the sets of two. All right, yes. So there were three of these in here. I took this equivalent, plus this, uh, this used up for diphenhydramine, 12-packs. The 12-pack had three, three times three, to start with. So I took three of the reds plus this.

ejourneys: Okay. Three red pills plus two --

Partner: Not at one -- yeah. Yes.

ejourneys: But we're talking within, what? Like, a 12-hour period?

Partner: Yes.

ejourneys: Okay. So, each red pill has 25 milligrams of diphenhydramine hydrochloride. Okay.

Partner: Yeah. So, two of these plus the rest of one dose of diphenhydramine I hoped would knock me out. It didn't.

ejourneys: Mm hm.

Partner: Uh, enter the beer. And pouring myself a half of a bottle, that didn't knock me out.

ejourneys: Okay.

Partner: Uh --

ejourneys: And that's when you turned to the brandy.

Partner: Yes. And actually before that, there was this -- this -- this plus two pills, not asleep.

ejourneys: Okay. So, two -- you're saying two of the green pills plus two of the red pills? How many --

Partner: Actually, the first time, uh, I believe it was two of these and one of the reds.

ejourneys: Two of the greens, one of the reds. Did you take any more pills after that?

Partner: Yes. I ended up drawing down -- there were three of these sets of two in this box.

ejourneys: Mm hm.

Partner: You can see that there isn't now. Um --

ejourneys: How many sets of two did you take?

Partner: There were three of these. As I kept being aware that I'm not asleep, I -- I can go through, it's like I would be down for ten minutes and realize, nope, not asleep, get up.

ejourneys: Mm hm.

Partner: And, um, so, and I, well, if one, I thought in terms of groups of, there was a time in my life when two diphenhydramines, I, okay, no, this is going to be about, um, this will be sleep and, uh, it won't be another list of a week with no sleep. I didn't add them to lists of other things, like blackouts. Um, just, I'm trying to be laborious and teach myself. Um, so I had thought this equals one red pill or red and white. And I know that one red pill is not going to do it. So I took an actual red pill.

ejourneys: Mm hm.

Partner: That was my first last night experience of pills. So, one plus two halves didn't equal sleep. I took another this, and one diphenhydramine. That didn't equal sleep.

ejourneys: Okay.

Partner: Somewhere in there, toward the end, I -- I memory thought there was a beer in the refrigerator. That wasn't true. It ended up that I cracked open a bottle and I intentionally left the cap, um, out here.

ejourneys: Mm hm.

Partner: In -- in case of writing down. I didn't write down, but I even wrote it down anyway. So, and I still hadn't fallen asleep.

ejourneys: Okay.

Partner: The, uh, so it ended up that the night started with, in the red pill category, there were strips that had six of them. Um, this plus three, and then another this plus three. Still not asleep.

ejourneys: Okay. When you say plus three, do you mean three red pills?

Partner: I think so, yeah.

ejourneys: Okay. So you said this plus three twice.

Partner: Yeah.

ejourneys: When you said this, you lifted the two green pills.

Partner: Uh huh.

ejourneys: So that happens, this plus three twice --

Partner: Right.

ejourneys: We're talking now a total of ten pills.

Partner: A different -- no, don't, please don't, um, add these to the red pill count, because they're different.

ejourneys: Right. But -- okay, so this plus three, twice, means you have taken four of the green pills and six of the red pills. Is that correct?

Partner: In total.

ejourneys: Over the past, say, 12 hours or so.

Partner: There was definitely four of these.

ejourneys: Four of the green pills.

Partner: Taken because the night started out with two packets like that.

ejourneys: Mm hm.

Partner: Three packets like that in this box. It's now two of the pills, one of the packets. So, four out of what looks like that.

ejourneys: Mm hm.

Partner: Six out of the red pills. One half of a beer. And the half, the jigger, I still wasn't asleep. Um, I think I was even thinking of having more than one jigger, so I didn't keep returning. But I actually controlled myself and had only one additional jigger.

ejourneys: So two jiggers of brandy.

Partner: Yes.

ejourneys: Is a jigger about an ounce?

Partner: Uh, well, the item I used is, well, the first time I rinsed it out, and the second time I didn't, because I think the cold water on my hand was waking me up.

ejourneys: Okay.

Partner: So I set it somewhere to dry. It was the little starry night cup.

ejourneys: Okay. So I think that's probably an ounce or an ounce and a half, maybe. I can measure it out.

Partner: Yeah.

ejourneys: We'll find it when we find it.

Partner: Yes. There were two times I was going to that liquor cabinet.

ejourneys: Mm hm.

Partner: Actually, um, I was thinking that the water on my hand made awakeness happen.

ejourneys: Ah, there it is.

Partner: Okay.

ejourneys: We can measure that out.

Partner: Yeah. And I think I filled it up to, um, about there both times.

ejourneys: All right. So about a half inch from the top.

Partner: Something like that.

ejourneys: Mm hm.

Partner: And, uh, it does [inaudible; something about residue] --

ejourneys: I can feel it on my, uh, my hand, yeah.

Partner: I rinsed it out.

ejourneys: Mm hm.

Partner: [inaudible; water running]

ejourneys: Okay.

Partner: And there might be some sticky from this, from the second jigger.

ejourneys: So, the measuring cup is showing --

Partner: Please move away from the sink.

ejourneys: Uh huh.

Partner: I need to rinse off.

ejourneys: Okay.

Partner: I mean --

ejourneys: Right.

Partner: Thank you. So at one point, I didn't take two jiggers.

ejourneys: Right.

Partner: At any given point --

ejourneys: Mm hm.

Partner: There was only one jigger involved.

ejourneys: The measuring cup shows about a third of a cup for the contents of that starry night.

Partner: And it was the first jigger didn't knock me out, maybe because of rinsing.

ejourneys: Mm hm.

Partner: I went back out, didn't have the other half beer, but did have another jigger.

ejourneys: Okay.

Partner: And that was, I didn't -- I don't think I had any more pills after seeing what alcohol could do for me.



On Friday my partner asked me what emotions I feel when she tells me her theories. I told her that I feel numb.

She thought that meant that she was boring me to tears.

"Not boring," I said. "Not tears. Just numb."

I don't know how she interprets my answer, but she accepted it.

I did not say that underneath my numbness I feel anger, impatience, and much dismay. I feel numb from clamping down on them and presenting a calm exterior -- because I can't tell her not to believe what she needs to believe. I can't tell her that every time she expounds on a new conspiracy theory I want to get her fitted for one of these:



Because heck, if one's going to wear a tinfoil hat, it might as well be faaabulous.

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Denise

And, thank you so much for sharing the Caregiving.com flyers. I'm sooo grateful you do that!!

Denise

Ah, EJ, I again sooo admire your courage. I've been thinking about an insight you shared during our last Hot Topics show; you said that when you relinquished, you found your motivation. It strikes me that you are relinquishing more when you tell others of what goes on. \r\n\r\nI totally understand your concern about respecting your partner's privacy as well as protecting her independence. \r\n\r\nYou deserve protecting, too. And, for you, I believe protection comes through support. When you tell your good friends about your life right now, you allow them a chance to support you, to offer a respite (a protection) from the pain of the life right now. Maybe your life right now will be too much for some. That's okay. For others, they will want to support you. I often think the our silence encourages more silence, so others don't know what to say, how to support, how to help. \r\n\r\nYou deserve, too. \r\n\r\n:)