"Hope is being able to see that there is light,
despite all of the darkness.” Desmond Tutu
“So, how is she doing?”
That’s the big question of our lives these days. Honestly, the reason I haven’t
updated yet is because it’s a hard question to answer. The very shortest
version is that she’s better than she was, but she is still not well. If you
have some time to spend with me, I’ll give you the fuller version.
Hope was in the hospital for 15 days. We knew
hospitalization was coming this time, but it was still chaotic, at least in the
beginning. We thought they'd work out a plan for starting the new med, let
us know the details, and we'd just head on over and check her in. What
actually happened is that when we met with her psychiatrist, she determined
that Hope more than met all criteria for an immediate crisis hospitalization. (Really,
she never should have been discharged while as symptomatic as she was at the
end of her previous hospitalization. We knew this when they discharged her, but
that doctor was the single one we've seen in all of this who we felt did not
care for Hope properly. That's a different story for another day, though.) On
this day, we were supposed to see her regular psychiatrist for the first
time since the specialist appointment, and discuss treatment going forward.
What happened, though, is that she sent us straight from her office to the ER. There
was no prior working out of details, no guarantee that the hospital folks would
do what we wanted them to do... we just had to get there and hope they'd agree
to help with what the specialist recommended. If not, it would have been a
fight to get them to let her go, after they'd already determined that she was
dangerous and needed to be committed, so that we could take her somewhere else.
Enter Dr. S. He took good care of Hope, and we liked him, though he wasn't exactly warm and fuzzy. He was bluntly
honest with us and was very grim about Hope's illness, symptoms, and prognosis.
He was alarmed at a particular manifestation of her psychosis. It's rare that
it takes this form, and when it does, the person usually feels guilt and distress over it. She does not have those expected feelings, and is shockingly casual about some really disturbing stuff. He was alarmed at how loose her
grasp on reality was, and at the length of time she’d been delusional without
it breaking. He said that, quite frankly, if there were ever a case for a
person to be institutionalized (which they just almost never do anymore), it
would be Hope. He wouldn’t even discuss the topic of discharge until we could
see whether she would show any response to this med. While all of that sounds
bad, it told us that he understood the situation. If he hadn’t been alarmed, we
would have felt that he didn’t have a proper grasp on things. Anyway, Dr. S.
agreed to start the new med that the specialist and Hope’s psychiatrist agreed
was needed. He wasn’t very familiar with it, so he spent time researching it.
He knew that the staff wasn’t familiar with it (as she was in a child/teen
unit, and it’s rarely used in this population), so he made sure they were
educated. He had a pharmacist sit in on treatment team meetings during Hope's
stay, so that they could get her input on things, and so that the entire care
team would understand how to monitor her, what to look for, etc. I believe he
was just the right doctor for us in this situation, and I am thankful that
things went the way they did.
Hope’s most serious symptoms have responded to the
Clozapine. This is amazing news, as it was our last-hope medication after the
failure of others. It is worth pausing for a moment to give thanks for the fact
that her psychotic symptoms are much better than they were. She reports that
she is currently not hearing any voices. (It’s important to keep in mind that
she hasn’t always reported symptoms accurately, and has hidden things so that
we couldn’t take away symptoms that she didn’t want to lose. However, we can
only take her word for the things we can’t see.) There has been a significant
decrease in the violent ideation. She also no longer believes that she’s
stuck in a dream. Those three big things are the ones that we most needed to
respond to this med, so that she would be safe enough to not require long-term
hospitalization. In this way, the Clozapine has been a smashing success, and
literally a lifesaver.
Why, then, am I unable to just say that she’s doing
great? Unfortunately, it’s not that simple. There are many other ways in which
she’s still not well. Despite the above, Hope is still psychotic, meaning that
her grasp on reality is “off.” She can hold a coherent conversation, and look
relatively “normal” on the outside, but if you go deeper, she has beliefs about the world that
are simply not in line with reality. She is still afraid of being harmed by a
particular type of inanimate object. She believes that all people believe the
same things she does, and that the rest of us just suppress certain thoughts
and desires due to societal pressure. (I’m not going to go into specific detail right now, but it is way outside the “normal” human
experience.)
In addition to psychosis, a positive symptom, Hope
still has a slew of negative and cognitive symptoms, though some have improved
to varying degrees. (If you’re not familiar with the categories of symptoms,
see my previous post or do a quick search on schizophrenia.) She does not have
the extreme flat affect that she had a month ago, but she does have a blunted
affect. She is still quite withdrawn. Not only does she not have a desire to be
around people, she actually struggles with having to do so, and becomes
agitated easily. (She has even stopped the one thing she had still been able to
find some satisfaction in – volunteering at an animal rescue. The last time she
tried, she stayed only ten minutes before calling me to come and get her,
because she just couldn’t stand to be around all those people. In the weeks since, she just hasn't gone back.) She is
oblivious to hygiene and personal care, and we have to make sure she takes care
of herself. (We’re even on the verge of a shorter hair cut, because she keeps
letting it get matted, and I have to brush it and take care of it.) She has no
ability to start or maintain any activity whatsoever, and doesn’t find much
happiness is anything. She still feels like her head is foggy, like she can’t
concentrate on things like she used to, and we still have to allow her to do
school work in small bursts that she can tolerate. Her thoughts still process
completely differently than they did before all of this, and her vision is
still “off” in a way that makes everything look sort of surreal. She forgets
things easily, she doesn’t notice things around her (she’ll knock something
over as she walks by, and it doesn’t even register, or something will happen
that everyone else reacts to, and she’ll just be sitting there, oblivious), she does
things that don’t make logical sense (last night, at dinner, she hollowed out a
dinner roll and put soup inside, and then seemed surprised when she bit into it
and soup went everywhere.) She is definitely not her old self, in really any way at all. One of the most frustrating changes is that she's irritable, easily agitated, and frequently snaps at people. Hope has always had a laid-back personality, and it is just not like her to be so unpleasant. Several people have commented that she is a teenager now, and I won't discount the possibility that it could be a part of it. However, she physically matured very early, so it's not like being hormonal is a new thing for her. And yes, she's also under a great deal of stress, with such a serious diagnosis and so many changes to deal with. I'm sure that's a factor as well. It's probably a combination of the illness, the
Despite all of that, there have been some
improvements. In addition to the improvement in psychotic symptoms that I
already mentioned, some of her other symptoms are less severe than they were. I
mentioned that she doesn’t find much happiness or pleasure in things. That’s
true, but not on the same scale it was. She had been mostly sitting around,
just staring, for hours on end. Now she often plays video games or watches
gamers on YouTube. It’s not as good as interacting with people, or getting
physical activity, but we allow more than we would if she were healthy, because
at least she’s not just in her own head all the time. She had been very, very
quiet, and is now talking more than she was. She even initiates conversation
sometimes, instead of only responding. It’s still not back to normal, but it’s
something. And, hey, at this point, I don’t even know what normal is. The
biggest thing to me is that she sometimes smiles or laughs. There was a period
of time where she didn’t really, except for an occasional awkward forced smile.
There are times now when she laughs or chimes into a conversation with a
sarcastic joke or remark, and I’m like, “Hey, there she is. I know that girl.” She does have some good days, or at least parts of days. “Good” is relative, of
course. She’s still a heartbreakingly different version of herself. I try hard
not to focus on that, though. When my mind wants to focus on how sick she still
is, I try to make myself remember how much better she is than she was just a
month ago.
This is long already, but I wanted to also give you
all an update on how she’s doing physically. She is tolerating the Clozapine
really well. She’s on weekly blood draws for at least the next six months,
after which point they’ll be able to space out a little more. She’s had various
cardiac tests, and will repeat those in a few months. So far, her white blood
cells look good and her heart looks good, and those are the big things. There
are minor side effects, but she’s been on various antipsychotics for more than
a year, so we’re no stranger to those. In all, it’s going very well.
I would love to leave you with more than an unsettled
half-update, but that’s where we are. We don’t know if more time on this med
will result in more improvement. It’s not uncommon to continue to see increased
effect over the first few months. On the other hand, the onset pattern of
schizophrenia is that it tends to worsen for a few years after the first break.
She’s not even a year and a half in, so there’s a good chance we haven’t seen
the worst of it. (That’s a scary thought, given that she’s one of the sickest
patients who most of her care providers have ever seen.) Then again, most
people don’t get treatment that’s this aggressive this early, and we hope that
could mean we’ve headed off some of that. I can't tell you what we're looking at long-term. I've said before, and you all know already, that her prognosis is poor. The specifics of her illness don't give a very hopeful long-term picture. We're doing all we can, though. We're setting her up with every possible resource for success. Her therapist always reminds me that in any set of data, there are the outliers, and we're planning for her to be the outlier. It's all we can do. We have the realistic knowledge that even in her best, most stable times, she may not be able to be independent or care for herself, at least without significant support. On the other hand, if there's anything we can do to increase the possibility of her living the most normal life possible, we're all over it.
I say it all the time, but we appreciate every prayer, every kind word, every bit of support from the people in our lives. We have essentially lost our child to this horrible illness, and now spend our time, our resources, our lives caring for what feels like just a strange, hollow shell of her, all while mourning the person she was and would have been. There are no words to describe the toll on us, or what a struggle life is right now. Knowing that she is loved, that our family is loved, is priceless.
