Sigh. Where do I start? She’s slipping, folks. Over the past
month, there has been a clear, undeniable decline in our Hope.
It’s been almost six weeks since my last update, and things
are not as good as we'd hoped. Within weeks of
returning home, Hope started having occasional hallucinations. It
wasn’t big things. There was a visual hallucination one day, and then she started
having auditory hallucinations a few times a week. Needless to say, we were
disheartened. However, we know that
some people respond only partially to antipsychotics, and will experience some
psychosis even during their best times. That’s better than not responding at
all, which is where we were for a year and a half, so we tried to hold on to
the positive. At least there was some response. At least “the voice” wasn’t
back, just some random, harmless hallucinations. We were cautious and watchful,
though. It seemed that if she were going to experience any hallucinations, it would be the
one that has always been the strongest and most stubborn.
We expected that if any psychosis were to push through the meds, that voice
would lead the charge. Her therapist agreed that it seemed strange, and we all
tried to get her to admit that perhaps she was more symptomatic than she was
telling. She denied. We observed. That’s all we could do.
The reason we focus so much on this one symptom, “the voice,”
is that it’s the scariest. Because of the things it says to her, and because of the strength of
its influence on her, she is unstable and potentially dangerous when it is
present. When our last round of med increases seemed to finally stop it, when
she cried and cried like a person who was genuinely grieving, that was the
biggest moment in her illness to date. This one symptom makes the difference
between her being safely outpatient or needing a higher level of
care. We’re in a difficult place right now, though. She’s telling us that she’s
not hearing it, but also saying that if she did, she wouldn't tell us. She bluntly says that she will never risk us
taking it away again, and that she would lie if it came back. We have no way of
knowing where we are. Maybe she’s not hearing it now. Maybe she is and always
was. Maybe it did go away briefly when we thought it did, but quickly pushed
back in as soon as her body adjusted to the new dose. We (her parents and her
therapist) see indications that she may be responding to stimulus that we can’t
see or hear. A couple of times, I've pushed pretty hard for her to just be honest with us, and she has even gotten teary and looked like she was thinking of saying something. She never does, though. Usually, she sits in
stony silence when we try to discuss it. She knows that admitting to this
symptom would likely mean hospitalization, at least for a while, and more importantly to her, she knows
that we would do all we could to take it away. So, when we can get her to say anything at all, she
says it’s not there. She continues
to deny. We continue to observe. This is our dance.
Over the past month, we have seen an undeniable shift in
Hope. It’s not just a matter of psychosis, or whether or not she’s hearing the voice. It’s an
all-around decline. Schizophrenia is an illness of remission and relapse, so
these declines are par for the course. We are always prepared for things to get
worse again, because they always do, and they always will. Even Hope’s most
stable periods are quite shaky, so we don’t get very high highs, but there is
still a world of difference between those times and the lows. And the lows are
hard, even though we expect them. At first, we hope it’s just a bad day. Then we hope it’s
just a bad few days. Maybe she’s extra tired. Maybe it’s hormones. Maybe she’s
not feeling well. Before we know it, though, it’s undeniable. Over the last few
weeks, the change has been pretty dramatic. She’s become more withdrawn, more
difficult to engage, more easily agitated when we try to engage her. It’s very
difficult to get her to take care of herself, to complete household chores, to
complete school work. (She will be schooling through the summer in order to
complete this grade.) She looks vacant much of the time. She will sometimes
just sit and stare for hours. She doesn’t initiate conversation, and responds
as briefly as possible when addressed. She sits in her bedroom or our family room, declines our invitations to join the rest of the family, and leaves the room if we try to join her. I make her attend activities and get out of the house, but she strongly prefers not to, and usually isn't very pleasant while we're out. This is the most flat she’s been since
last fall, and it’s just really hard to watch.
For privacy reasons, I don’t post pictures on this blog. I
don’t even use her real name, I certainly don’t want to plaster her face all
over the internet. I'll put a few pics on Facebook, though. If you're friends with hubby or me, you can take a look at what we're seeing. I don’t want to seem like I’m exploiting her in any way, but I really
want people to understand what she’s going through, what this illness does. She
holds together as well as she possibly can in public. She has gotten very good
at appearing to be “normal.” She works with her therapist on appropriate social
behavior. Besides that, she just doesn’t want to stand out (she’s 14, after
all!) and she also isn’t willing to show weakness by allowing anyone to see her
looking wounded. Because she does her best to hide symptoms, it’s not uncommon
for people to tell me that they don’t think she looks unwell. I know that most
people aren’t questioning my version of events, they’re just processing what
they’re seeing. Sometimes, the phrasing even shows that they're complimenting her ability to be strong. Sometimes, though, the phrasing seems
skeptical. People will tell me that she looks like a regular teen, or that all
teens display the things she does. Those statements hurt me, because I feel
like the person assumes I’m blowing this all up in my head. Perhaps that’s not
at all what they mean, but it feels that way. I can assure you that we have far
too many experts involved in her care to mistake typical teenage behavior for a
severe mental illness. Beyond my own hurt over these statements, I want people
to be aware that you can’t always see mental illness. It is so common, when
there is a crime or a suicide, for people to say, “I had no idea. (S)he seemed
so normal/happy/healthy/just like everyone else.” Many people with mental
illnesses are masters at putting on a “happy” mask in public. Hope is very good
at this. It is usually only those closest to her that see her unmasked. To
those who know her really well, though, it’s quite visible, even when she’s
putting on a pretty good show. It’s heartbreaking to watch her go through so
much, just to blend in and keep her vulnerabilities protected. It’s even harder
to watch her go through all of that, and then hear people tell us that she
looks fine, and that we just need to let her be a teenager.
The current state of things here is that Hope is in a
partial hospitalization program. The program is the same as inpatient, except
that she’s home evenings and weekends. Each day, she does school, several group
therapies, individual therapy, and is seen by a psychiatrist. We don’t know
that this will change anything for her, but her outpatient therapist thought we
needed to try something more than outpatient, due to the significant decline we're seeing. We don’t have anything to lose. Basically,
what were doing is twofold: 1) She is getting significantly more therapy there
than what she has in a week’s time on the outside. 2) She’s being seen by a
really good psychiatrist. The therapy may or may not do anything for her. Her
willingness to participate varies. This is a good therapist, though, who knows
her outpatient therapist personally, and who really gets Hope. Just maybe, with
all the time she’ll be spending with her, she’ll get her to open up about some
things we think she’s hiding. The psychiatrist is a huge thing, too. He’s one
of the best we’ve personally encountered. He has treated her before and is familiar with her case, as this
partial hospitalization program is related to an inpatient program where she has been. He trained at a really well-known program, under an
adolescent psychosis specialist who we have been trying to get in with. He
knows his stuff. He’s also consulting this specialist on Hope’s case to get her
opinion on what else we can do with her meds at this point. We don’t know that
she will come out of this treatment any better than she was, but we will at
least be confident that we’ve tried all of the right things for her.
Basically, all of this is a really long-winded way of saying
that things aren’t great here, that we’re not sure how to fix them, but that we’re
doing all we can. It’s not good, but it could be worse. It has been worse. It
may get worse. We’ll take it as it comes. I'm sorry I don't have better news. It actually makes me really sad to give bad news, because I know that so many people are rooting for our girl. This is real, though. When I decided that I needed to keep a blog and talk openly about life with mental illness, I decided that I would be as real and honest as possible at all times. I don't have nearly as much good news to share as I would like, but that is often the reality for families who have an ill member. Please, go out today and find a way to show love to someone you know who is struggling. It may make all the difference in their ability to make it through the day.
I'll try to update again soon, especially if there is any change in our circumstances, for better or for worse. Much love to all. <3
