He’s home…but…New diagnosis and a rant
Well, like the proverbial roller coaster analogy, this past March was full of ups and downs in my household. On the mental health front, Scott was hospitalized for about a week, due to escalating symptoms. As far as mental health crises and hospitalizations go, this one actually went quite smoothly. Went to the ER, got an evaluation, Scott went willingly and voluntarily to an inpatient facility, stayed 5 days, got treated, and then released. We’ve followed up with the therapist, the psychiatrist, and he has already had one medication adjustment post-hospitalization, and will most likely need more.
In other words, we have done everything right. Ever since Scott came home in 2016, he has been in regular treatment. I have sat in with him on every appointment. He has been faithful to take all medicines as prescribed. He has been closely monitored through labs and regular doctor visits. We could not be any more on top of things than we’ve been for the past 6 years.
And yet, it has still been a struggle. It’s the nature of the beast, I suppose. I’ve seen the other side…the non-compliance, the involuntary hospitalizations, the decompensating beyond my ability to help, and his ability to seek help. So, I know how much worse things can be. Everything we’ve done in the past 6 years, has been in an effort to prevent things from getting to that point beyond either of our ability to control.
And, I’m not going to lie. I’ve been frustrated. Not with Scott, because he can’t help it. I am actually extremely proud of Scott for being proactive in his own care, for making wise decisions, and doing all he can to be well. He has been trying so very hard to cope with, and manage his symptoms. He has been patient waiting for medication to bring relief that never comes. He has sought out all kinds of healthy ways to deal with what he’s going through. Going for walks, journaling, listening to music, playing his practice drum set, talking things out, even coloring. He has actively sought out help when he could no longer cope. He truly deserves a medal.
My frustration lies with the mental health system. I’m frustrated with doing everything I am able to do in my power to help my husband, to advocate for him, to support him, and I still feel like we’ve slipped through the cracks. Maybe due to the pandemic, or to the overwhelming case load, therapy has taken months to get into. He was put on a waiting list back before Christmas, with a February-March possibility just for an appointment. Finally, thanks to being hospitalized, he was able to move up the list a bit quicker. But, when all of the literature says to combine medication treatment with therapy, and you can’t get the services you need, how is that supposed to help anyone???!!!
And here is my other frustration. For years, I’ve done the best I can to advocate for Scott, and to educate myself on mental illness, bipolar disorder, the symptoms, etc. I admit, when we first got married, I was naive. But I’ve tried to remedy the situation by learning as much as I can. I may not be a mental health professional. But, because I live with Scott daily, and see and hear what he goes through, I’m sure I know him better than anyone who sees him for 15 minutes every few months. Along the way, I’ve learned a few things, including about another diagnosis called schizoaffective disorder. The most frequently asked question I pose to his nurses and other doctors, is “Are you SURE he has bipolar disorder and NOT schizoaffective disorder??” And I’m told that, even if he did have SA, it would be treated with the same medication, and it’s a difficult diagnosis to parse out.
Well, that doesn’t make any sense. Because I’m telling them, and Scott is telling them, all of the things he has experienced. The number one distinction between schizoaffective disorder and bipolar disorder, is that in SA, there can by symptoms of psychosis with NO mood changes. No mania, no depression. It can almost look like schizophrenia, but not as severe.
How is it that, I can read a pamphlet or a website, and determine that my husband most likely has schizoaffective disorder, and NOT Bipolar 1, and these people with degrees and medical licenses can’t see it???! Or, dismiss it by saying it doesn’t matter?
Ugh.
Well, we finally found someone, after TEN years, to tell Scott definitively that he most likely does indeed have schizoaffective disorder, bipolar type. Which, based on MY rudimentary understanding and reading, is quite different from both Bipolar disorder, and schizophrenia. It’s neither and both, at the same time.
In the end, it’s just labels they give to a group of symptoms that are common in its manifestation. Ultimately, I personally believe that mental illness is like fingerprints…no two cases are the same. It seems to me that it ought to take way more than 15 minutes every 2-3 months to adequately treat those symptoms. It should not be this hard for people who really want to get well, to get help. Maybe it’s because we have crappy insurance. But mostly, I think it’s the system itself. It is well known that the American Mental Health System is broken. Not even just the mental health care system.
I’m telling you, this is why I try to stay tight with Jesus!! I’m not even trying to be funny. There has to be a way to fill in the gaps. I can’t do it myself, and neither can Scott. I have to pray every single day for wisdom, for guidance, and help just to stay afloat.
Meanwhile…
On the caregiving front, it has been challenging as well. I am the sole breadwinner. As I’ve shared before, my job as a musician gives me flexibility, but it doesn’t give us much money. I had to miss out on two concerts due to caring for Scott. I missed the 2nd performance of a concert series I was participating in, because of the trip to the ER that led to Scott’s hospitalization. I had to withdraw from another concert series all together that was going to take me out of town for 2 nights, so as to not leave Scott alone, or saddle Jasmyne with anything urgent that might arise while I was gone.
Granted, it has been very rare that I’ve had to do this. But, the possibility always exists, and I am sure that because I have so much flexibility and room in my schedule to be Scott’s support person, it has aided in the health that he has managed to have. I did manage to complete an amazing residency on a jazz project, that kept me close to home. We also have so much support from our church, friends, and family, and I have understanding colleagues. There are always things to be thankful for.
Still, we’ve lost income. Which makes for more financial challenges, which adds another layer of stress to an already stressful situation.
It’s a ripple effect…the tentacles of mental illness reach far beyond the person with the illness. It reaches into the family, into the finances, into society…there has to be a way to do better. But, I don’t know how.
I’m sharing this, not to complain or to paint a bleak picture of life in the shadow of mental illness. But, to keep it real. It’s hard. But, life is hard. Life in this world is hard, and even for those of us who may have it a little easier in some areas, there are for sure other areas that are every bit as difficult as this one is for us. I’m pretty sure we cannot escape this world without that tribulation Jesus promised us we’d have.
Thankfully, through all of this, while it has been challenging, the one thing Scott and I do have in our favor is a good relationship. Our marriage might be hard and unusual in many ways, but it is solid. We’ve come a mighty long way, in our understanding and our approach to dealing with things, and it has made a world of difference. We are blessed in that way. But, it has not come easy. The only thing I can say is that from the outset, we endeavored to build our foundation on the Rock of Christ, and not on sand. The winds have definitely come along and blown on us like a hurricane, tsunami, and tornado all at once. And yet, we’re still standing.
If I was going to have to be on a harrowing journey like this, at least I can say there is no one else I would rather be on it with.
So…how firm is YOUR foundation?