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An Aim in Life

My sister often complains of having no purpose, no goal, and no ability to accomplish anything. On the one hand it’s hard to argue with, given her very real and severe limitations. On the other hand, one could ask what can anyone accomplish that is of true significant. On the third hand, I have my own answer to this question: We work to reduce suffering. That is the only thing that really matters, and the only true contribution we can make. And my sister can do that too, in her own way. For instance, by volunteering at a pet shelter (which she does, for about 45 minutes a week).

Yesterday I had dinner with my sister and my mother at a Chinese restaurant, on our way to dropping my mom off at the airport. My sister surprised me at the beginning of dinner, by pointing out a vegetarian item on the “specials” menu – she usually doesn’t read in great depth, or else doesn’t understand what she reads. That was nice of her, and impressive.

At the end of the meal, the obligatory fortune cookies came. My sister struggled to open one (my mother eventually opened it for her) and, after crunching the cookies, squinted at the slip of fortune.

“What does it say?” my mother asked.

“It says… ‘An aim in…. life, is… just fortune'” my sister said, puzzling out the words.

“What does that mean?” my mother asked.

“It means there is no point to having an aim in life, it’s all just fortune, just luck, anyway.”

My mother took the slip of paper from my sister and read it out loud: “An aim in life is the only fortune one needs.”

And I thought to myself: Life is a projection test. And I was sad for the rest of the evening.

 

My sister was quite cheerful after the meal. My mother asked me why I look so sad, and I said I was very tired (which was true, but wasn’t why I was looking sad). My mother said she was tired too. My sister gleefully remarked that she is actaully not tired at all, but she can’t drive, so we are still stuck driving tired. Good for her. It’s rare that she jokes about any of her limitations.

 

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Sharing Simple Social Time

Today I achieved a major landmark with regards to the way I want to interact with my sister, and with regards to the kind of involvement I want in her life. Today we went out for lunch.

Just lunch. No “business” to take care of. No meetings before or after. Just going out for lunch.

It has been my goal to a weekly social outing with my sister, just sharing time and not “working” on anything in particular. The last few weeks with her have been very taxing for me, since she had a slew of medical appointments, sometimes as many as 3 a week, and I accompanied her to all of them (usually with my 4-month old baby). It was too much, and I got burned out. It may have been too stressful for her as well, given how she blew up on me after one of them.

I have since decided to ask my mother to step in and accompany my sister to medical appointments. My mom and my sister have a very difficult, complicated relationship, and my mother has Stage 4 cancer (which miraculously doesn’t cause her pain or debilitate her). All this makes me very hesitant to ask my mom to help, but at some point I realized a few things that resulted in my asking my mother to help:

  • Scheduling the appointments is taking up a lot of my time
  • Arranging transportation for my sister is taking up a lot of my time
  • Accompanying my sister to the meetings is taking a lot of my time (and almost always takes much longer than I expect)
  • My sister’s medical appointments won’t always be this frequent
  • Whoever accompanies my sister needs to be very well-versed in her medical and psychological condition

I had considered hiring somebody to take care of my sister’s medical appointments, but I think it would require a lot of training for this person, and they would need to be available at all kinds of strange times. It could be done, and I was close to doing it, and then thought again about my mother, and decided to give it a try.

The results was that, this week, for the first time in many months, I went out on a date with my sister. She had a medical appointment earlier this week, which my mother took care of, and I was glad to realize I have time to go and just spend social time with my sister. We went to a diner and ate and talked for about an hour. Although she doesn’t have a lot to talk about, I learned long ago that the easiest way to have a real conversation with her is to talk about myself (which used to make me uncomfortable, but now I’m grateful to have this option). These days my sister also asks about my son, and so we talk about him and laugh about the stories I tell her.

I was driving her to work after we finished eating, and she suddenly said: You know, it’s funny that this is one of the first outings I’ve had as an adult. And I asked her: What do you mean? We’ve gone out before to restaurants or to walk around. And my sister said Yeah, but usually with mom.

Which factually is not true – we have gone out many times without mom, but that was before my mother moved near us. Since my mother arrived, I’ve had almost no social time with either my sister or my mother – it was all “operational”, taking care of necessary logistics and appointments. And in this way my sister was totally right: This was the first date we’ve had in a long, long time. It felt good to spend some human time together. And, not surprisingly, my sister did not call me later today, and her helper did not contact me about any special problems after seeing my sister today.

I feel good about accomplishing my goal of a weekly date. Next week may be very different, but I am continuing to move in the direction of offloading “tasks” and becoming more of a “manager” than a “worker” with respect to my sister’s care team. Because it allows me so save time to just take her out to lunch. To just be her brother, and help her feel more like the human that she is.

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Thank You for Apologizing

Simple words, and so important. Apologizing is hard, taking responsibility is hard. It’s especially hard for someone like my sister, whose mental illness (a form of paranoid schizophrenia) inclines her to perceive the world as a malevolent place, where people try to confuse and hurt her. When someone does something as hard as apologizing after someone does something so hard, that person deserves credit. Getting this kind of credit makes it easier to take responsibility next time it happens, makes another apology more likely in the future. And it just seems like the decent thing to do. The gracious thing to do.

But accepting an apology can also be very hard. When I feel injured, unappreciated, wrongly accused, it takes a while before I can accept an apology. With my sister, even though it’s hard for me, it’s critical to do this, and do this quickly. If I don’t, then we’re still fighting, things are still tense. My sister does not tolerate tension well. Things may well escalate, and I may then hear about it from someone else – her flatmate may call to tell me that my sister is shouting at her, or my sister may cancel her therapy appointment – and in all those cases, everybody loses. For all these reasons, it’s important to acknowledge times when my sister takes responsibility for her behavior and apologizes, and to do so quickly. But it’s so hard.

Today I was on the phone with my sister, talking with her about her schedule for tomorrow. First her social group, then the individual therapy appointment which she had rescheduled from Friday to Wednesday. We were going over the transportation schedule when my sister said “I can’t find my wallet, so I don’t have a way of paying for my rides.” I was not in my best form, I’m afraid. I was tired of her misplacing things, tired of having to figure out her schedule, tired of feeling like 50% of my life’s energy is going into her – in short, tired of being a primary caregiver. So I gave in to my anger and stress and replied snarkily with something like “well, I suggest you look for your wallet and, if you can’t find it, call everybody you’re supposed to see tomorrow and cancel.”

I made so many mistakes in that single sentence, provoked her in so many ways, and of course she got upset. She began swearing at me. I promptly hung up. I made a rule a long time ago, which has actually served me very well, that whenever my sister is screaming and/or swearing at me, I end the conversation and give her time to cool off before getting in touch again.

A couple of minutes later, I saw my sister had left me voicemail. I checked it and, unbelievably, she was saying that she’s sorry she shouted at me and that her wallet had “reappeared” (I wish she said “I found it” instead of “it reappeared”, but that’s a battle for another day). I realized right away that when I talk with her, I should thank her for apologizing and tell her how impressed I am. But I was still angry with her, and it’s hard for me to pivot emotionally so quickly, even though she did the right thing by apologizing. I am well-aware that her short temper and verbal aggression are related to her brain injury, which leads to difficulty with impulse-control. But I am also human, and feel insulted and unappreciated when she is aggressive toward me (even though, in retrospect, I realize that I was the first to be nasty on that particular conversation).

I called her back. I did not praise her or offer any positive words, just said “are you ready now to talk about tomorrow’s schedule?” and then, when she confirmed, reviewed it with her. I tried to speak with her normally, not in a resentful or annoyed manner, and I think I did okay, Later on, my sister apologized again: “I’m sorry again for the unpleasantness before,” she said, and I found myself deflating a little more. I said the words I knew were the right words to say before I had time to think too much about how I felt, before I had time to back away from doing the right things. “Thank you,” I said. “I really appreciated it when you called me and apologized, and I’m really impressed that you were willing to do that.” My sister thanked me, and that was that. I wished her a good night and we ended the conversation with very little tension.

It’s good to have a script, something I can fall back onto if I need to say the right words but I’m not in the right head/heart space. My script is the one I wrote above. It serves me well. Perhaps you too will find it useful. Repeat after me: “Thank you for apologizing. I’m really impressed that you were willing to do that.”

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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.

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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.

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Block Her!

Today I hit yet another breaking point with my sister. She had been getting increasingly agitated over the past 3 days, shortly after she stopped taking her morning Lorazepam, and has been shouting and screaming at me every day over the phone at some point. Today she asked that I help her schedule her ride for tomorrow, so she could get to work. I did this, then called her back to and told about the time the ride was scheduled for. My sister, already agitated, cut me off with an incredulous “WHAT?! No, I’m sorry, this is just not acceptable!” and hung up on me.

I was left standing in the entrance to the restaurant where I went to place the call, baby strapped to my chest, friend waiting for me at the table, shaking with anger, taking deep breaths. It just felt so ungrateful of her, so inconsiderate, so entitled, and I was livid.

I choked down the urge to call her back and shout at her. What’s the point? It won’t change anything, I’d just get angrier, and it would take more time.

I also didn’t want to hear from her again. Never would have been ideal, but I realized even then that’s not realistic. However, I decided it was time for a break. So I blocked her on my phone.

I had blocked my sister before, for a few hours at a time, when things got too intense and I felt I wasn’t going to handle well any additional conversations with her. But this time, I’ve kept her blocked since.

It’s been amazing.

For starters, she seems unaware of the fact that I’ve blocked her. She is used to leaving me voicemail and me calling her back later, sometimes much later. So from her perspective, very little has changed. In fact, she told our mother that I said I won’t be available for a few days because I’m busy–which I didn’t, because I hadn’t spoken with her for the first few days I had her blocked–but the point is that my sister made up a reason why we weren’t talking that she was comfortable with.

The improvement in my quality of life is immense. I used to dread her phone calls, would always have a quick and intense internal debate about whether to pick up when she calls, would feel guilty if I ignored her call and stupid if I picked up too often, and all this was costing me a lot of energy. My beloved partner has also experienced the same improvement in quality of life, and mentioned it spontaneously to me – the frequency calls from my sister have been hard on my partner, too.

If I’m wondering how my sister is doing, I can always go into the “Blocked Messages” section of my voicemail and see the many messages she’d left.

This is only possible because my sister already has some support network in place in addition to me. She can call my mother, she has her housemate, she has her personal aide. If there is a true emergency and she is able to use the phone, I will hear about it before long from one of those people.

I would like to call my sister more frequently, maybe once a day or every couple of days. Even without doing this, it seems to be working well. I’m a lot less on edge, when I do speak with my sister she doesn’t seem to have an issue with my not answering, and she seems to be doing well overall.

In the past I would have thought this was a cruel thing to do, or demeaning, or at least inconsiderate. Right now, it seems to be a great act of self-care that is helping me be less annoyed and more emotionally present with my sister, less burned out overall, without really costing her much. So, at least under our current circumstances, it seems to be a very good solution.

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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.