Not Fighting on the Way to the Grocery Store

Today my sister shouted at me, accused me of not understanding anything, and then hung up on me. Often these are the opening notes of serious drama. Thankfully, I was able to apply some hard-earned lessons and ride it out without significant casualties, by remembering to do a few key things:

  • Take a deep breath
  • Lower my sense of urgency
  • Ask my sister what’s hurting
  • Ask my sister if she took her medication

Sudden Storm

It’s a pretty day and I’m driving to get groceries, my almost-3-month-old son in the back seat. I call my sister to say hi. She tells me about her recent confusing interaction with her housemate (the housemate invited my sister to join for a yoga class, then left without her). As we work through what happened and what to do next, my sister starts shouting at me: Why did you bring me to California? My life is horrible! You don’t understand how bad it is! You’re just sticking me here and nobody cares!

And then she hangs up.

Immediately the potential catastrophes jump to my mind. She sure seems agitated. Is she going to be aggressive toward her flatmate (again)? Will the flatmate text me (again) to say that she is leaving because she isn’t feeling safe? Will my sister spiral down and I will have to rush over there and hospitalize her, or maybe…

Connecting Instead of Fighting

I take a deep breath and ignore the rush of catastrophes I was imagining. I fight down the urge to call back right away. It’s not urgent. After all, in the times when I hung up on my sister (which I usually do if she is screaming at me), I didn’t like it when she immediately calls me back, and continues doing so endlessly. My sister is alone in the apartment, so she can’t take it out on her flatmate. Let’s give her some time to calm down, and also some time for me to calm down.

I finish grocery shopping and call her back 20 minutes later. She answers calmly, sounding tired. I ask her about her pain: Do you still have a headache? Yes, she says, and proceeds to describe with astonishing detail the exact location of the ache (an inch into her skull, above her right eye and to the side, etc. etc). We talk about which medication she can take and about drinking enough water. Then I suddenly realize that if she’s this worked up in the middle of the day, perhaps… I ask Did you take your medication this morning? and she says No, she didn’t. So she is probably having some rebound anxiety from missing her morning anti-anxiety medication.

A few years ago, I would have asked her why she didn’t take her morning medication… which would have sent us both down the rabbit hole. I dodge that bullet and instead explain that missing taking medication on schedule can contribute to her headache, and she says Oh, okay. Will you take it now? I ask, and she says Sure, hold on. Then we talk about about the medication she can take for her headache, and about the importance of drinking enough water. She asks how my son is doing, and we finish the conversation. In the evening I get a voicemail message from her: She went with her flatmate to the afternoon yoga class, where she only lasted for 15 minutes. But she went. And she sounded decent.

One More Day Ends Without a Crisis

It could have gone much, much worse. It has, in the past. Maybe I’m finally I’m learning something. In the past I would have argued with her, called her right back, argued with her some more, probably riled her up further, maybe driven up to make sure everything is okay (read: to be angry with her in person), spent a lot of time anxious about her potential breakdown, and generally have my day ruined. Instead, being able to reduce my sense of urgency and connecting with her in a caring way turned out to have made for a much better day – hopefully for both of us.

The Medication Adherence Dance

My sister exhibits what clinicians call “poor medication adherence” – she often does not take medication as prescribed. She takes them early, late, not at all, too little, or too much. She takes seemingly random prescription medication to try to improve her headache. She doesn’t remember what medication she took, or when. She frequently suspects somebody changed her medication, or that it has been disappearing and reappearing, or that her dosage is off. The consequences of missing medication range from unpleasant (headaches, grogginess, scheduling emergency meetings with the psychiatrist to prescribe extra medicine) to catastrophic (aggressive psychotic episodes).

It’s challenging.

Today has been a case in point. I called my sister around 6:45pm, to check in. My sister answered with a groggy “Good morning.” When I told her it’s evening time, she was surprised. I guess she had been sleeping, woke up in the dark, and decided it’s been a full night’s sleep.

She had already taking the morning medication for the following day. This is half problematic. On the good side, it’s great that she’s taking the medication so readily, and better that she takes them somewhat off-schedule than that she forget or refuse to take them entirely. On the bad side, this means that she took medication 12 hours earlier than she was supposed to, so now she has a higher concentration than intended of the drugs in her (since it’s been 12 hours between doses, instead of 24) and will later have a lower concentration than intended (since it will be 36 hours between doses, instead of 24). And messing with strong medication can make you feel bad. And missing her morning dose of anti-anxiety medication can cause rebound anxiety, which is not a great way to start the day.

In terms of schedule, my sister has two kinds of medications: Daily (some in the morning, some in the evening) and as-needed. The daily medication includes anti-anxiety medication, anti-depressant medication, anti-psychotic medication, and a headache preventative. The as-needed medication is for her headaches, but also the same anti-anxiety medication she takes every morning (in case she feels or seems to be revving up).

How to Improve Medication Adherence?

I’ve been thinking about a couple of possibilities:

* Getting a medication reminder clock. I found something that looked good on Amazon, and will give it a try.
* Getting a medication dispenser that dispenses medication based on pre-defined timing. The automatic ones I found are very expensive. I need to do more research on this.
* Preventing my sister from having access to her daily medication pill bottles. This mean she would only has access to her weekly pill box (for her to take her morning/evening medication, which are pre-sorted into it with the supervision of her personal helper) and to her as-needed headache medication. I guess I could also leave some anti-anxiety medication, for times when she seems to be getting too worked up – but even as I wrote this, I am pretty sure that she will take them to try to solve headaches. Nevertheless, if there’s only a limited number of pills available to her, it can’t do much harm.

Limiting Access to Medication: An Ethical Dilemma?

This last idea makes the most sense to me, but raises a significant autonomy problem, as well as a paranoia problem. My sister is deeply suspicious about her medication, and one of her most frequent fears/grievances/complaints is that someone else has been messing with her medication. Like so much of my sister’s paranoid thinking, I think this has to do with her limited sense of autonomy, since she is aware of relying on others for nearly every aspect of her life, from grocery shopping to cooking to setting doctor appointments to arranging medication. Keeping her medication away from her and just delivering a portion of it weekly may be too disturbing for her, activating too many of her fears and taking away too much of her sense of autonomy.

I will have to discuss this with her and see if we can come up with a system that would be mutually acceptable. Right now, her disorganization with medication is creating significant discomfort, both for her and for me. When we talk about it, I hope I will have the wherewithal and the grace to approach the conversation positively. Something like celebrating achievements, expressing care, specifying problem that she cares about, suggesting course of action, explaining benefit.

* Celebrating: You’ve been doing a good job taking your medication. It seems like your mood is good and your stress is low.
* Expressing care: I’m concerned about your headaches.
* Specifying problem: The headaches may have to do with not following the medication regime regularly.
* Suggesting course of action: I suggest making sure the headache medication and the anti-anxiety is available to you, while only having access to the morning/evening medication bottles when sorting pills into the weekly pillbox.
* Explaining benefit: This will help you take the medication as prescribed, which will prevent sharp changes in medication in you, and help reduce headaches.

Sounds like a plan… let’s see how it goes.

If It Ain’t Broke… Don’t Make Changes to Medication

My sister isn’t prescribed a lot of medication, relatively speaking. Every morning she takes Sertraline (anti-depressant, which helps take the edge off of her agitation) and Lorazepam (to reduce anxiety). Every evening she takes Olanzapine (anti-psychotic). She has been using these medications for a few months now and has been generally doing well, with relatively few incidents of extreme agitation/aggression (and those tend to happen when she skips her medication).

I accompanied my sister for her latest visit to the psychiatrist, who said that Lorazepam is not something he usually recommends taking daily, but rather only as-needed. He explained that the effectiveness of the drug goes down when it’s used frequently, and that each pill is really only effective for the 4 hours after it is ingested, rather than for the whole day. My sister, of course, was only too happy to agree to remove it from her list of daily meds and to only take it as-needed.

So she did.

One or two days later she screamed at me while we were talking on the phone, after weeks of not being this agitated. At the time I thought perhaps the circumstances were stressful for her–she had been complaining about a sore throat and asked if we could schedule another botox injection for her vocal cords–and let it go. But the following day she screamed at me again over the phone, and again on the third day (at which point I blocked her, which turned out to be a very good decision).

The coinciding of her stopping with the morning Lorazepam and her becoming much more agitated was hard to ignore. And even though correlation does not equal causation, it was still very suggestive. And of course the causality of the Lorazepam was testable, if my sister were willing, by having her start taking it again.

I called my sister’s psychiatrist to consult with him and to task if it’s reasonable to go back to having my sister take the Lorazepam daily (during our first visit to the psychiatrist, we all agreed that it’s okay for me to communicate directly with the psychiatrist if I have any concerns). He reiterated that the pill should only work for a few hours after it’s ingested, but that if I see such a clear shift in behavior then it’s okay to go back to a regimen that was working, if my sister is willing.

I emailed my sister’s personal helper, who noticed my sister was more agitated, and asked that she discuss it with my sister and suggest adding the Lorazepam back to the daily meds. After they met, the helper said that my sister agreed to take it every other day, which was a good enough start.

I met with my sister a few days later and, after spending a nice hour together (we went out to pick up her medication, went to Five Guys for veggie sandwich and French fries), we went back to her place to arrange meds for the week. We were adding one more medication that my sister has been waiting to receive for a while (Amitriptyline, a daily pill that my sister’s primary care physician prescribed with the hope that it will prevent my sister’s frequent and severe headaches), and I suggested that my sister resume taking the Lorazepam daily. I pointed out that my sister seemed more agitated since she stopped taking it, has been driven to shouting on multiple days, and seems more tense in general. i was in a pretty good place emotionally during the conversation, and I think I was able to communicate this from a place of caring, rather than being accusatory or condescending, A little to my surprise, my sister agreed almost immediately, and arranged her medication accordingly.

It’s been over a week since then, and my sister seems well. I learned two things:

1) Even though the effect of each Lorazepam pill is supposed to be fairly brief, it seems to change the entire day for my sister. Maybe it’s because she starts days with less agitation. Maybe she metabolizes the drug differently than the drug companies (and the psychiatrist) think. Either way, the evidence seems pretty clear.

2) There was no reason to change the medication regimen, since it was working. I’m all for using the least amount of medication possible, but in this case dropping the daily Lorazepam resulted in a significant deterioration in the quality of life for both my sister and people around her. I don’t fault the psychiatrist for suggesting to switch to as-needed, but I’m glad we got it back to daily.