Restored Post from March 15, 2012
Blog Post from my wife Maureen Cooke's page: http://www.maureencooke.com about living with someone who is mentally ill.
So Here Goes:
A couple days ago, I posted The Go Ahead, in which I explained that Jonathan had told me to write as honestly and forthrightly as possible and not worry about hurting his feelings.
So here goes – and know that it’s still hard – because I still worry that some of what I write may, indeed, hurt his feelings, and I don’t want to do that. And, yet, I would be doing a grave disservice to the credibility of these blogs and what I hope will be the memoir of my experiences with Jonathan.
So big intake of breath here, square the shoulders, raise the chin, and get started:
In July 2010, when Jonathan checked into Colorado Recovery, he was on, what I can only refer to as, a shitload of meds. He was on 3 different anti-psychotics: Geodon, Zyprexa, and Risperdal; he was on an anti-depressant: 80 mg of Lexapro, which in all likelihood, was responsible for the rapid cycling of his moods; he was on a mood stabilizer: Lamictal, a mood stabilizer; a tranquilizer: Klonipin, and, on his own, he was taking Benadryl, generally 10 to 20 pills a day. A few tabs of Benadryl would have helped eliminate the dystonia caused by the anti-psychotics, but in the quantities he was taking only attributed to the psychosis. SeeDiphenhydramine-induced psychosis, if you’re interested in the topic.
The staff at Colorado Recovery was able to get Jonathan on the right meds much more quickly than his doctor here in Corrales would have been able to do, treating him as an outpatient. Reducing psychotropic medication quickly needs careful medical supervision and is really better done as an inpatient. Still, as drastically as his medication was adjusted in Colorado, when he came home in October 2010, he was still on very high doses of Risperdal.
A couple problems with anti-psychotics: They cause weight gain, which in turn causes an increase in blood sugar, which in turn can cause metabolic syndrome. Anti-psychotics may be necessary, but they are not without significant, dangerous side effects.
In addition to the more dangerous side effects, the anti-psychotics can also cause lethargy, and schizophrenia and schizoaffective disorder can cause apathy, so initially, when Jonathan came home, he spent most of his day lying on the couch. Pretty much doing nothing.
One day, I came home from shopping and was carrying in bags of groceries. Jonathan stayed on the couch. He didn’t get up, didn’t offer to help, and, in all honesty, I’m not sure he even noticed I’d gotten home.
When I came into the living room, there he was lying flat on his back, headphones on, staring at the ceiling. He noticed me, took off the headphones, and then said: “I know you hate the apathy. I read inSchizophrenia: A Handbook for Families that it was the one symptom that families hated the most. Well, I can’t help it.”
And maybe I could have been more tactful in my response, but what I told him was, “No. Why would I care if you spend the whole day on the couch? It’s not what I’d do, but I don’t have schizoaffective.”
“It’s a negative symptom,” he told me. “It means I don’t have any interest in anything. And it’s not my fault.”
“Yeah, I know.”
“And you still blame me.”
“No, Jonathan,” I said. “No. I don’t. And the apathy? I couldn’t care less about it. What’s hard for me, what I don’t know how to handle is your negativity. Your assumption that I’m finding fault with you when I’m not. When I’ve never found fault with you. That’s what I have the hardest time with.”
The negativity is closely linked to the paranoia, so that for Jonathan to tell me that he knows the biggest problem I have is with his apathy, he’s making an assumption about me, and it’s an incorrect assumption.
However – and here comes the paranoia – my trying to talk it out with him doesn’t resolve the issue. He thought for the longest time that I was silently criticizing him for lying on the couch. (By the way, he no longer lies on the couch all day. Amazing what the right combination of meds, in the right doses, can do. Western med isn’t all bad.)
And because of the thought problems from the schizoaffective, he wasn’t really hearing me about the negativity. In addition, the negativity so frequently leads to paranoia that when he’s in that space, I can’t reach him.
The problem with the negativity – for me – is that by nature I am a positive person. I default to optimism, to liking people, to feeling hopeful. That is my natural state.
However, if I am around negativity or despair, such as the case with my Luther Dad (I think after my mom died, he sank into despair, which didn’t abate until he himself died in 1990), the negativity gets in. At a psychic or soul level.
If I am around negativity in short bursts, I can block the energy. I can take my mind and emotions elsewhere, but I don’t really want to disengage from my own husband, and yet I can’t afford to let that level of negativity get in. It’s not healthy for me, and ultimately it’s not healthy for him.
An example (and this is related to the medication issue, as well): I have been ill since the beginning of November with a flare-up of Hashimoto’s, which is an auto-immune disorder and which reacts very badly to stress.
And I have had a very stressful week, which began with my inability to get into the safe where I keep Jonathan’s meds. That was on Monday night. The stress that I was feeling about the safe breaking was causing my thinking to deteriorate, which made me weepy. I wasn’t thinking right. And I’d had a misunderstanding with Jonathan; I thought he was ignoring my request to help me try to get the safe opened.
Jonathan’s doctor, in the meantime, and one of his caregivers were wisely advising me to let the safe issue go until the morning. I couldn’t. That part of my brain that could pull me out of my own level of paranoia that Jonathan wasn’t willing to help me was also making me “decide,” as I told both his doctor and caregiver that if Jonathan wasn’t willing to help me get the safe open, then I wasn’t going to replace the meds, as the doctor suggested, or let the caregiver help me in the morning.
I told them both that if Jonathan wasn’t willing to help me, then he didn’t need his meds.
See? My mind isn’t working right. Even as I was saying it, I knew my mind wasn’t working right because Jonathan needs his meds.
Then I decided what I’d do is stay at a motel for the night (I was already in my pajamas and thought that was a good thing because that way I wouldn’t need a suitcase.) Then I thought that checking into a motel in my pajamas was a bad thing, so I figured I’d go for a drive. It was 15 degrees out, and the roads were icy. And a friend texted me ALL IN CAPS to please, please be careful that the roads were treacherous.
It was about at this point that I sat down and cried.
Because of the Hashimoto’s, or something else, it is taking me a very long time to recuperate from that level of stress, so when I saw my endocrinologist the next day, I was still stressed, still weepy, so when she asked me how I was feeling, saying I looked sad, I started to cry.
This is not a doctor who handles crying. She excused herself, telling me she had to check on a client and would be right back. When she returned, she told me that my thyroid levels wouldn’t be causing such emotional lability, and she would prescribe Armour, but she didn’t want me to take it until I coordinated with a holistic psychiatrist.
I felt dismissed and frustrated and a lot like I’d never be well again. I cried all the way home.
When I got home, two of the caregivers listened to me and hugged me and suggested I call my therapist, which I did. My therapist, in turn, suggested I see an integrative physician, who may be able to help me get to the bottom of what’s going on with me.
However, the stress of Monday and Tuesday left me still stressed on Wednesday and a bit stressed on Thursday. I’m not at my normal baseline. I’m limping.
Thursday, Jonathan had a manic episode, which led to his being angry with his doctor and which led to him texting me that she never listened to him, didn’t believe that he needed to increase his meds, and the he didn’t want to see her again. That he was done with her.
It is his doctor’s opinion, and mine as well, that my being ill, especially with my emotions being so out of whack, results in a loss of predictability in Jonathan’s environment and exacerbates his symptoms, and as uncomfortable as those symptoms may be that before Jonathan’s meds are increased permanently, we should wait until I am better to see if that helps bring Jonathan’s symptoms back under control.
My position, just as I already indicated, is that psychotropic medication has serious, dangerous side effects. My own uncle died from a heart attack at 40 because he was diagnosed with paranoid schizophrenia back in the late 50s, when patients were routinely given huge amounts of anti-psychotics, which led to my uncle having metabolic disorder, which killed him.
I don’t want that for Jonathan, and I’m sure his doctor doesn’t want that either.
But when Jonathan gets in that space, it feels to him as if no one is listening to him, no one is hearing how horrible he feels, and there is no way for me, when he’s in that space, to reach him, to reassure him that I do care how horrible he feels, but that a permanent increase in medication is not the answer right now.
I am not opposed, nor is his doctor opposed, to his increasing his meds; however, she (and I) want to make sure that a permanent increase is absolutely necessary.
Seeing Jonathan uncomfortable, seeing him manic and paranoid and angry, is stressful for me. In October, before all this thyroid stuff started, I was able to maintain the equilibrium necessary for me to ride this out – to reassure him without being drawn in to that level of negativity about his doctor.
Now, it’s additionally stressful because it requires more physical energy for me to accomplish that. I won’t see the new doctor until January 3, and, in the meantime, I’m in a holding pattern.
So this morning, when I got up, Jonathan was already awake. He told me he’d read my Facebook post from yesterday, in which I’d written it had been a long day in a long week. Jonathan said, “That was because of me, wasn’t it?”
I told him, “No.”
He then started talking about one of the caregivers and how horrible she had been to him; he called her a name, and I stopped him, told him that I desperately needed a positive day. That I could not go to any negative space today, so please if he was angry, tell me he was angry, but don’t call anyone names, especially someone I like.
“See,” he said. “I knew that post was about me.”
I sat down with him then and explained to him what had happened on Monday, how that had carried over to Tuesday, how dismissed I felt by my doctor, and how hard it was to keep being my own advocate for my health care.
He asked if I were being resistant to the suggestion that I need psychiatric care. I told him ‘no,’ that I’ve been in and out of therapy for nearly 40 years, and that I wasn’t opposed to taking a psychotropic drug if I needed one, but that I wanted to get to the bottom of what’s been going on with me, and that a psychiatric problem, such as depression, would not cause my vision to be blurry and sometimes double, would not cause an inability to regulate my temperature, and that I needed a doctor who would get to the bottom of what was happening to me physically before I would start drugging what I see are the emotional symptoms of an, as yet, untreated auto immune disorder.
So…. what I’ve been going through for the past few months, and what I’ve written here, is what it’s like in the “real world” of living with someone with a serious mental illness.
This is no Benny and Joon. There is no quick fix. No cool music from the Proclaimers. No Johnny Depp doing Buster Keaton impressions. Living with someone with a serious mental illness is hard. It can be done, and people can thrive, but it is difficult; it requires commitment, emotional resiliency, and a tremendous amount of outside support.
So thank you to:
J’s caregivers,
His doctor,
His therapist,
and my own therapist.
With their help, with their support, I feel hopeful, even as I recognize I am still out of whack and will probably continue to be out of whack for at least the next few months.
Thank you.
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