Family and Caregiver Schizophrenia Discussion Forum

Coming to terms with diagnosis and treatment


#1

My son had his first (severe and identifiable) psychosis about two years ago. He went straight onto anti-psychotics and made a very quick recovery. For the following two years, he has mostly NOT taken them, and has managed to function at a reasonable level. He can usually take care of himself in terms of housing and food. He has worked a little. But he has had suicidal ideation, for which he accepted anti-depressants, and a couple more psychotic episodes. This time he has been “sectioned” under the Mental Health Act.

He accepts that he has psychoses, though he is clear with me that he likes the religious convictions he gains from them (obviously he is manic to some extent), and he argues against taking anti-psychotics because he thinks the long-term effects may be unknown or too damaging. Whether that is his real reason or not is open to question.

In the UK, they CAN actually force him to take APs. I thought they couldn’t. But I just read the Mental Health Act, and they can. I would rather he was not forced, but I do think he is not going to live long WITHOUT them. If you knew what he has been doing lately, you’d think so too.

If you or your loved-one with sz take anti-psychotics, how long did it take you to accept that life would be better long-term on them? What were your reasons for accepting them?

Please don’t hijack this thread with anti-AP arguments - I know them. That’s not my question. I want to know people’s OWN reasons for taking them.


#2

For me, ap’s make me manage my life. I can hold a job and be active with my kids. The down side is that I get no “kicks” or rewards from computer games, being at the gym, running or anything. Everything is dull. BUT I take that. I can’t work without medication. Work gives me money and a purpose in life and activity. I need to shower and dress every day.

Actually I don’t know if the lack of lust and joy is from medicine or schizophrenia. It could be both or either one of them.


#3

My pdoc said BEFORE I got meds that I suffer from apathy and anhedonia. So it propably is caused by sz.


#4

I couldn’t live without them, my hallucinations were too intense, I hallucinated things people said, things that happened. It was impossible to understand what reality was during my psychosis. My delusions were also very strong, and some very scientific, so they could be proven or theorized about. So I need aps to cope with reality.


#5

Yes, my son had avolition for years beforehand. Did you have your job and your kids BEFORE you got sz? I am sure my son would like both those parts of life but he is in a vicious cycle where he doesn’t believe he will ever have them so it affects his motivation to get well. I think I need to keep on about that.


#6

Thanks, Minnii, I’ll talk to him about that too.


#7

Yes. Married since 2001. Got ill in 2009. Two kids born before I got ill. But getting married is not a problem if he gets “normal” on meds. I am pretty “normal” when things go well for me. But I have pre-psychotic episodes when I stop sleeping. Look to that he sleeps well at night. Sleep is the key to recovery.


#8

I think I came to terms with the diagnosis pretty early.

But I was treatment resistant for a long time. I self-medicated and justified that to myself for a long time.

It wasn’t until I was so far down in the negative symptoms that I just gave up. I had no will power… I had no life really. I was frozen in one spot and the effort it took to move… to think to do something was enormous.

So when the meds got tinkered with and I was in a state of nothing left to put up a fight… I did what I was told.

New meds and my family helped me… then things started getting better… turning around.

I could feel myself start to get out of the negative swing… I started accepting that I needed my meds. It took so long to find the right meds in the right combo. But now that I have… I feel like one of the lucky ones.

Good luck to your son and I hope things get better for him and you.


#9

I think he reached that point, he got treatment, was given really good housing, started to do some courses, but then went psychotic again because he was off the meds and I suppose even good stuff is stressful. I feel we might go through the mill several times before he gets fed up with it. Maybe I’m too impatient. It is awful watching him get hurt or hurt himself like this.


#10

I’m sorry to hear that… I was crumbling at 15… my parents tried to help me as much as they could… but 17 was the break that landed me in hospital… I didn’t get my act together until about 27.

It wasn’t for lack of parental love… or lack or resource… it was just my brain… my stubbornness… my cross wired head that would stop the meds as soon as I felt cured… also some of the brain changes were so fast… I felt tinkered with… and that would freak me out too… so I would try to go back to the level I was used to… that felt safer. (if that makes any sense)

There was a mid point too where I knew I needed the meds… but did I really need them for LIFE??? That took some time to come to terms with too…

My Dad helped me wrap my head around that one… it took some time.


#11

That makes sense to me. The first AP he was given tranquilized him into a “Stepford Son”. Just before he took it, he’d be snarling at me. An hour later, he was dying of shame at what he’d said. Two hours later he was unconscious. Even I found that alarming. I was seeing why some people with SMI think they are being drugged for their family’s sake, not their own. But his team is good. Whenever he says he doesn’t like a medication, they are willing to find something better for him. They actually gave him Abilify, which is hard to get in some places because its expensive. But it lies in a drawer!
We’ll see in the next few days. He might be given a depo injection, or they won’t let him out, I reckon.


#12

Maybe he’s afraid… if he’s had some negative med reactions before… that might make him hesitant to try more meds…

Haldol knocked me on my butt… really hit my head hard… I felt numb and plastic… no pain receptors… I cut my finger good on a kitchen knife and didn’t feel it at all…

it didn’t work for me at all…and I got a rash…

When the Seroquel was introduced… it took some time to warm up to.


#13

Ok. That’s interesting. I think he needs to talk to other people who’ve been on these medications a bit more. They have a kind of social group but my impression is that they go out and do stuff together but don’t actually talk much.


#14

It took my roommate at least two years to accept that she needs to take her medication. When she first moved in with us we didn’t even know she was only taking them sporadically. Once we figured that out, it explained why she was having break-downs at work, self-harming, and convinced that everyone hated her. She started taking them more regularly after that, and showed enormous improvement. However, she periodically stops again, or takes her AP but not her AD. We’ve never really been able to pin down why she doesn’t take them, other than forgetfulness. She’s never indicated that it’s due to side-effects, at least.
Unfortunately, it may have to be something your son realizes on his own. Just like people with an addiction often need to hit rock-bottom before realizing they have a problem. We told her time and again how important the meds are, pointed out how much better she seems to feel when she’s on them, and warned that not taking them regularly can be worse than not taking them at all. None of that really seemed to make an impact until she had an epiphany herself.
Talking to others who have been on the medication may help though. Keeping him on pills long enough to alleviate symptoms may help. It sounds like he’s been there already, but quit again. But something I’ve noticed with all mental illness is that you often don’t see just how bad off you are until you get better. For my roommate, not having been to the hospital or harming herself in a year seems to have made the point that she’s much better off with them.


#15

Today we met my sons pdoc and my son agreed to a depot shot. I was amazed. It is good news.

But he wanted his psych nurse to leave the meeting. She is the one who got him sectioned. She got him sectioned with information that I gave her, and she was mad when she left the room.

I was asked to give my opinion and refused to ask for her to stay. I am afraid she will break confidence and tell him that I spoke to her about his previous behavior.

I am afraid I am screwed now. I’m am going to have to tell him.


#16

Hm. All those fucking neuroleptics do is screw people up more. Yeah you look great when you’re dead inside, it’s easy to forget there’s a person there. It’s easy. You can’t go off them without becoming psychotic and most people do–that’s why when you get a diagnosis people never recover hmmm maybe because you are subjected to harsh chemicals and told you can not stop taking them. Yeah, what a freaking lie. Absolute lie. Complete lie. There is no cure, and forcing people to take pills doesn’t cure them either. People can fuck off with it. Mental illness isn’t a chemical imbalance either that’s just a side effect of larger problems.


#17

Yes, APs are not going to cure my son of sz any more than insulin is going to cure my diabetes. On the other hand, when I stop taking my insulin I just get dehydrated, fall into a coma and die quietly, without violating any other human being’s rights.
When my son doesn’t take APs he goes into psychotic rages, abuses people, frightens them, demands money which he then spends on stupid things in his mania, threatens people with knives, etc.

This time it was section 2.

Section 3 is a life-long order. Other people have rights too. If you have to be sedated so you don’t keep on violating other people’s rights because you can’t or won’t control yourself, that’s the price of living in society.

If you don’t like society, I’m sure you can find a shack on a desrt island or simply a prison cell.

The bottom line is that nobody does have to put up with your rages. You can negotiate with others about how much they will tolerate on the grounds that you deserve sympathy because you have an illness or disorder.

But if you think you can insist on your right to be disordered at everyone else’s expense, you’ve got another think coming.

I am sometimes frightened of my son. I don’t have to be. I have no moral duty to put up with being terrorized, abused or even insulted.

And nobody forgets you are a person. When you are raving, abusing and threatening people, you don’t LOOK like a person. You actually do look like you are a devil. It is horrifying. And YOU forget that all those around you are people, and people have rights.


#18

Many of us are in terribly difficult situations with no clear pathways.

Sectioning, Holds, and Baker Act, etc. are all about behavior.

Rights and responsibilities are for everyone. We must carefully preserve one another’s rights; this becomes complex in practice.

My understanding is that the anti-psychotics might work well for some people and might simply be a better option for some or not work at all. That is what the science says, anyway. It seems like the forum gives anecdotal evidence for this as well.

Once a person is in so much pain or distress that harming or threatening harm is part of the behavior, there is no pleasant option.

I wish that everyone could see what people go through and try to create treatment and social supports with true care that prevent or minimize repeated psychotic episodes and disability. I honestly have no idea what that would look like; I don’t believe anyone should be forced to take medication unless their behavior becomes harmful, so hopefully they will not wind up in jail or on the street.

At this point in time, to get my family member help that he is frightened of and does not find helpful, I would have to do something that he considers to be against him.

So, I prioritize him and our relationship because my family member is my real priority.

I do not want to mess with him by trying to get him access to treatment (which has proven impossible to get and/ or maintain). When my family member has severe paranoia, he thinks I am against him no matter what I do. So, at that point, there is no trust to lose. I would call social services to get him little or no help (if the past is any indication of what services will be received).

The worst is the current social services and medical treatment set up that pits family member against family member, loved person against loved person. I don’t understand that. It’s an illness. Treat it. Take care of the person who needs help in a way that actually helps. If the family can be helpful, bring us in and tell us how. If not, find a place for the person to live safely and have a life as healthy as possible.

Terrible situations with no clear solutions. A debilitating illness without a cure. I understand why any of us would sometimes get angry.

But I feel we are all in this together.


#19

So far I haven’t had this experience of being pitted against each other by social or health services. My son had a ten-year prodrome in which I saw all the negative symptoms - anhedonia, avolition, cognitive deficits, paranoia, rage, black and white thinking, depression, total social withdrawal - so I am afraid I just don’t swallow it when people on here blame that stuff on the medication. My son was completely drug-naive. No APs, no marijuana, no alcohol, even no tobacco, and he progressed all the way to full-on psychosis.
And I accept that APs don’t work for everyone, though I note that a lot of people, maybe most people mix them with drugs and alcohol, so they sabotage themselves.

But they work for my son. After a single dose there’s visible improvement. After three days, he’s almost back to himself. After three weeks, only some negative symptoms show. And this time I am hoping he’ll try sarcosine too.

Yes, I prioritize our relationship but so far, fortunately, because I do that, even in psychosis, he trusts me and I can get through to him.
Today the pdoc told him he is throwing away years of his life and warned him that he can progress to Section 3 - that’s like being a “lifer”. Anytime you refuse meds or lapse, they can pull you in and detain you if you are a danger to others.
My son gets housing, a living allowance and support from the health service. He is still rational enough to understand that he has a reciprocal responsibility to look after himself.


#20

Sorry, Hatty, I interpreted the situation with the nurse as one in which you might be seen as going against your family member if she stayed in the meeting…

"[The nurse] is the one who got him sectioned. She got him sectioned with information that I gave her, and she was mad when she left the room.

I was asked to give my opinion and refused to ask for her to stay. I am afraid she will break confidence and tell him that I spoke to her about his previous behavior.

I am afraid I am screwed now."

I didn’t understand that, I guess. I have been in the situation where I report information that is used “against” my family member rather than to help him, like they are going to somehow challenge or threaten him into wellness? I give the information so doctors will know about symptoms i.e. delusions or hallucination or paranoia, not so they can confront him as if he has done something wrong by being ill. For example, for a pdoc to say a patient is “throwing away years of his life” seems like blaming someone for their own illness.

Some people really do not know what is happening, including me.

I live in the US. 8 -10 years until diagnosis. 18 years wait for housing. More than half of people with SMI untreated. Hundreds of thousands homeless or imprisoned.

Currently, in the town where we live, there is not even a waiting list for housing. It’s been closed for a few years until the list becomes less than one year wait. Should open up again in the next few years…

I’m glad to hear the situation there is different and better. It sounds like needs are being met.