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The 3a.m. Conversation

May 12, 2014

It feels odd and slightly weak that I’m writing my second post in a week about sleep but it’s starting to rule my head.

It is now four weeks since Steven last had any antipsychotic medication. The consequences have been phenomenal. I’m trying to not get too anal about the weighing scales. Once a fortnight is more than enough. But since we started cutting back the meds, Steven has lost just under four stone. If his liver is going to repair itself after years of lazy psychiatric intervention, this seems to be the best way to go about it.

As the weight loss becomes more and more visible, I find myself swinging between joy, anger and deep shame. The joy is obvious – Steven is finally being allowed to be his uncoshed self. The anger is directed at all those professionals over the years who have valued Steven’s life so dismissively, they have allowed him to reach a point where he has a life threatening condition. And anger towards the drug companies, who have reprogrammed nations into believing the only way to deal with normal life difficulties, is to reach for the pill box. I’m ashamed because I have been complicit in all of this. I’ve attended meetings with psychiatrists, social workers and dieticians and smiled sweetly when they’ve told me that I’ve got it all wrong – the huge weight gain isn’t down to the drugs but down to my denial about food issues.

Sleep. Now that Steven has come alive again, I’m having to face the reality that he can get by on very little sleep. For four weeks I’ve been trying to manage on about four hours a night. Last night between 11 and 1am, Steven kept up a running conversation from his bedroom. He went through every Take That video and what each member was wearing in each video. “Love ain’t here anymore- Howard Donald was wearing a white shirt and white waistcoat and white trousers”. And then he expected me to repeat everything he said, back to him. After two hours, I was climbing the walls. I knew that it could set off a meltdown but I got up and went downstairs for a drink. I switched on the TV and tried to get involved in some dreadful 2am game show. After 20 minutes, Steven joined me and carried on the conversation until we got to ” Love Love”. By 4am, we were back in bed, just in time for the support worker’s arrival at 6am.

People keep telling me to reintroduce the tablets. No way. He’ll be dead by thirty if I did that. And it doesn’t feel right to douse Steven so it’s more convenient for me.

I am hoping it will level out after a while. In the meantime, I’m going to disobey the personal budget people and move some hours about, so I can get a midweek respite night, just to catch up on some sleep.

Now, I just need to find a room somewhere so I can get that sleep.

From → Social Care

  1. Really difficult trying to get the right balance Mark. Steven’s health is the most important issue here but you need to get your sleep also. My son is almost 8 and his sleep pattern is having a big effect on us as parents and his brother who shares a room. We only use melatonin at the moment. Your situation is a heads up for us though. Good luck with the reduction in medication and has to be good to lose weight like that. Hope you also get rest you deserve,

  2. foginthecloister permalink

    I’ve tried reducing my son’s antipsychotics a number of times and inspired by various sources of really worrisome information, including your blogging about Steven’s health crisis, I’m trying again. We’re down to just 0.5 mg per day now. The last couple of weeks Will’s been saying “her brain feels better now”. He is super duper hyper, and has blown up a couple of time but then he’s had some serious meltdowns whilst fully medicated so I’m trying to keep it in perspective. I share that sense of guilt and shame that the medication was really for me (and for his class teachers, though in the end they expelled him anyway). 11 years he’s been on them. We’ve just begun melatonin in the evening to try and help with the sleep pattern. It just supplements naturally produced melatonin, and I’ve heard from other parents that it can make a big difference. No signs of that as yet, he went to bed at about 6pm last night and was up and chatting to me at 1am, luckily I think I am needing fewer and fewer hours myself as I get into middle age. Now I just need to sync our sleep time and hold my nerve.

  3. You’re right about the laziness of prescribers. It just seems easier to dope people up than address any real issues but to do this to the extent where Steven’s life was threatened is really shocking. I’m so glad you’ve taken this step, Mark, and I suspect Steven will be much happier, too. Let’s hope it settles so you can get some sleep soon xx

  4. Sally permalink

    I’m so sorry you are getting so little sleep.
    If you resume any sort of medication at any stage it wouldn’t be a defeat or an admission or anything like that. Steven’s medication regime was clearly causing him to put on so much weight that it was affecting his health. It would have made a world of difference I’m sure if this had been at least (!) admitted to be a contributing factor.You could then have had straightforward discussions about how best to proceed.
    People who take anti psychotics which lead to weight gain but which in other ways are best for their symptoms often have to factor in enormous, constant amounts of exercise to conterbalance this. This just isn’t realistic with someone with LD.
    If you are under a Dr you trust you could have a frank discussion about what in his/her/your opinion went wrong-dosage? Type? Combination? Sometimes with some medications you just have to be open that that is the deal-it will help with ABC but the side effects for this person are XYZ. With LD people who don’t have any symptoms of psychosis, the anti psychotics are usually being used for their sedative properties. They don’t make people addicted, like, say the benzo drugs (valium and the like) But the side effects can be so hard to live with.
    Stephen will be dropping weight because of stopping the medication and because he is going at 1000 miles an hour.
    Easy for me to say, but I think you are doing the right thing in seeing just how thing are for Steven without the medication at at this time of his life.No more vague hypotheses-this is how he is unmedicated. Anything you do to manage this will at least be an informed choice.

    • Sally permalink

      I agree with Shirley. In a bit,weigh up the risks and benefits, discuss with a medical practitioner you trust. Your business, but I’d caution against feeling as if you have painted yourself into a corner where any sort of medication of any dose is a defeat.

  5. Shirley Buckley permalink

    Mark at least 6 months without the medication, I always say a year, then weigh up risks benefits.

    • Pauline Thomas permalink

      These ‘professionals’ who berated Mark about Steven’s eating habits while he was caring for him, should now be apologising. I would like to see them in sackcloth and ashes! I am beginning to get sick and tired of the way carers are talked down to by ‘professionals’ whenever we raise an objection to the way medication is being prescribed. We know our loved ones better than anyone, and it should be shared decision making. We afterall are the people who are on the front line when caring for our loved ones.

      Mark you are doing the right thing. Sleep deprivation is awful, but I have every faith in your determination to keep Steven drug free. On the other hand, your life with Steven should be made manageable for both of you. Good luck with the change in the caring regime. If the personal budget people are really serious about Steven’s welfare they should be looking after his Dad too, because you are the person that is giving Steven a good quality of life. something they were unable to achieve.

  6. Kay permalink

    What time does Steven wake up if he goes to sleep at 4am Mark?

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