Living in Chaos: Survival

Update on the Hilger home --- Even when our children are relatively stable, life is never normal with Mental Illness...

09/27/04

It is important to remember not to beat yourself up for parenting mistakes, or bad moments. One thing I have had to learn is that we all make mistakes and will continue to do so. We can and need to apologize in a calmer moment, and let our children know we will try to work with them the next time. Trying to work out some kind of a signal form them to us that they are overwhelmedis helpful. Of course I say this and David is not usually able to do this well if he progresses too far in a situation. However, he is able to step away and calm down at times when I notice him becoming agitated, and let him know I am seeing this. This is a huge improvement for him to be able to accept someone else's evaluation of his mental state. Mostly, you take the time and the persistence to learn those triggers and situations which your son does not do well in. In time you will get better at avoiding the pitfalls.

I have tried hard to talk with David to make certain that he knows I am trying to work with him, not against him, and I often have to be the first to apologize and make efforts to regain peace after a misstep. He is not capable to step beyond the paranoia and overwhelming stress to initiate, however, if he is approached, he can meet me part way. It is good.

If we hang on, it will get better. This illness has been a blessing to the extent that I have been forced to learn patience and compassion, more than I ever thought to know. This illness can bring us closer with our children, in time.

09/28/04

I just got back from taking David to his weekly blood test for Clozaril... He's had a not great morning. Not feeling well, and a touch paranoid. He spent a chunk of the morning showing up behind me or beside me just staring, or moning, and staring... While we were at the hospital, he was sittingin a chair in the lounge. I sat in a chair against the wall, reading a magazine. My chair was 90 degrees to his and I was facing his side, though not looking at him. He turns to me 3 times with "What?"

I told him I did not say anything, he said "Stop staring at me!" I was reading a magazine! I asked him if he was feeling paranoid, and suggested he sit beside me then he would not think I was staring at him... He did and that seemed to take care of it.

We stopped to see Gene and had a sandwich with him. David is sleeping again here at home. He seems to be sleeping more lately, for no apparant reason. No more stress than normal, no med change, just more sleep... I guess this is liekly normal, just don't like it. He has Accounting tonight. I hope he makes it through. He got last week'd homework done, but has another chapter which was supposed to be due tonight. He can turn it in next week, but I hate to see him behind, it adds stress to him.

Oh well, life does go on, and symptoms are manageable, so we mange them.

10/03/04

Things are getting better. Over the years, we have gotten used to "Managing" manic symptoms for Dalton and making adjustments. This is not a crisis, I don't think we have had a real crisis in a long time. Last Spring, when his annual mood shift to mania, and the transition of our move, combined with adjustments for his new school knowing how to intervene all hit at once, it was pretty close...

Things are a teensy bit calmer with Dalton??? Hard to tell, he has been on the Zonegran for a week, we upped the dose to 50mg last night. increase again to 100mg next week.

Deb, we have tried most of the meds with Dalton and he is activated by almost any of them that has that possibility as a side effect. Actually, Depakote was the first ever mood stabilizer we tried and he had a full blown episode of what his doc called "Organic disinhibition"! Tightroping a 2x4 railing 10 foot off the ground of his play area! Running in front of cars, cutting himself with knives and coming to show me with a proud grin on his face... "Look, Mom! See what I did?" Depakote was a BAD med for him. Tegretal did nothing but make him vomit, we got up to 1400mg/day no results for his mood, in combination with the Lithium, then we did Topamax. he was on the Topamax, Eskalith, Zyprexa, Seroquel combo as his base for the past five years. It was working, but it was time to try to minimize the number of meds again, we had not done so in a couple years.

Their doc told me to decrease David's Clozaril by 50mg at night, I did so about 5 nights ago, and no bad effects, if anything, maybe he is a bit more alert and less nauseas. Keeping fingers crossed here.

10/04/04

Things are going pretty well here, however, evidently David's job performance has been a bit off??? He has been working for the Dollar Tree since July 10. About 3 weeks ago, there was a day when we got a call, and he had written down his schedule for the week wrong, he wrote down Wed/Fri hours and was Tues/Thurs, so he was called to work Tues and was about half an hour late. Evidently, though the manager just told him not to do it again, it was counted as a write up... About a week ago, David says there was a customer complaint that he had told them he could not look for somthing, and supposedly told them there was no manager on duty... Was write up number two, though he says he did not know was a write up...

Today he called for his schedule and was told he had to come in to pick it up. Warning thought went through my head when he told me, and sure enough, he went and was told he is no longer employed, and they have already replaced him. evidently, on the 25th his manager said she told him to stock some items, he says he did not hear her, and she left a card with instructions for him on his shift, which he says he did not see... Write number 3 and they let him go.

Honestly, the last situation is not uncommon for him to miss something, and I have noticed that he has been dragging more the past week or so. His doc decreased his medication by 50mg and I think he is a bit more alert. We never did talk about his SZ to anyone at his job. I doubt it wouldhave made a difference if they had been aware of it??? Actually, I told David that I was immensly proud of him that he got the job and has done so well for almost 3 months. I used to "KNOW" that he would be fired from his first job, I was certain he would cop an attitude. This is minor in comparison, and he is stressed and upset, but taking it well. He is already planning on seeking another job.
---------------
David was getting pretty stressed, unfortunately this built into being unable to do anything. he tok half a thorazine and went to sleep. Still... Good coping skill to recognize stress and be proactive with it, instead of losing his cool...

Hopefully he'll be worth something later, he has a LOT of accounting homework. I was getting him started when he called for his schedule and yadayada...
---------------
I was finally able to get David up from sleeping at 6:20pm. he had some pizza, did oneof 9 homework problems that is supposed to be due this evening and played nintendo games with one of the other children who comes to Bible study with his father. Jordan is Dalton's age 11, but the picture of him and Dalton, the gap is so large, sometimes we forget just how large the gap really is! David noticed this and we had a conversation a few weeks ago, it was a great example to be able to use t finally try to get him to a place where he might be able to understand the reality of Dalton's limitations.

Anyway, he was dragging heavy last night, but he had a good day all things considered. Hopefully, he will be able to get moving today. We have bloodwork, need to do his school ID, and he has homework.
---------------
I have to remind myself that it is important to keep looking for the positive moments, there will be more.

David lost his job yesterday! This was his first job ever, and he had gone out and gotten it on his own in July. He had been there almost 90 days, but evidently there is a 3 strikes your out policy. He had written his schedule down wrong, shifted the whole schedule off by a day, one week and was 20 min late to work once. Then a customer complaint about his being unwilling to look for something and supposedly said there was not a manager available at the time. Finally, last week, the manager says she asked David to stock some items and left a note which he claims not to remember or find, and he did not do the work... He called for his schedule yesterday and was told to come in to get it, and they let him go.

Now this may seem negative, but there a re many positives buried in this scenario.

1. David did not freak out. He was stressed out and upset, but kept his cool, even accepted my advice to take his half tablet of thorazine a couple hours early, then slept off the stress all afternoon.

2. He is already talking about finding another job.

3. He was not let go for attitude, aggression, threatening statements, etc... Only four months ago, I was certain he would never last in a job for defiance of authority and his mouth!

4. He was give a life lesson that when you work for someone, you are responsible for what you say, think, and do, and there are often no second chances... I have been telling him this, but having it from another source, not mom, is good.

5. His ability to recognize his own stress, take "Some" of the responsibility for the situation, and accept comfort instead of melting into paranoid accusations and a tirade is a miracle...

There is always hope.

10/06/04

Dalton was supposed to have a half day school today, but is stuffy. His behavior was more giddy and manic than lately, we went swimming, but still, he often does not look or act sick when he is. He was snoring and groaning so in his sleep, I called the school and told them I was keeping him home today for a cold. If I can keep him down, maybe he will sleep it off before it gets real bad.

I don't give him cold meds unless he is on his death bed, they destabilize his moods badly.

So feelign a bit loopy here this morning... but the boys are both still quiet for now. they slept in the living room last night. Dalton is watching cartoons and David is still snuffling and snoring.

10/07/04

David is doing well. He did apply for one job yesterday, and hopefully will spend some time tomorrow doing so. We recently reduced his Clozaril by 50mg, a week ago, as he is seeming to be more sedated, and having nausea more often... He is really dragging before noon, and some after as well. His doc thought maybe as he has been doing better he might be on too high a dose. We've seen no worsening of symptoms, but not a lot of improvement on the sedation. we hope that he will be able to find another job which will allow him to work aft/eve and weekends when not taking his night classes.

Sometimes, it just hits you with the differences in social maturity, independence and the impact of this illness... Today, I took David in for a medical appointment. I wanted to check with the doc re: a rx for an acid reducer for David's stress/medication SE related acid reflux. He has been having at least once daily where he is vomiting an amount of acid, and worse when stressed.

The doc gave us samples for6 weeks :) She also did a cholesterol level, and an EKG to test for any QT interval problems. We had never had this done since he has been on the Geodon. It was normal! :)

The impact reality of this illness is the lack of social interaction. David relied on me to talk with the doc about his symptoms and concerns. He is 17, you would think he would be able to verbalize how he is feeling, symptoms, etc... Very flat affect with the doc and nurse, and almost no eye contact or conversation... I remember being 17, I talked for myself, verbalized my health concerns, and usually did not want my mother there during an examination!

David is doing very well compared to just months ago, but this illness certainly still has effects!

Posted by TwoSons at October 7, 2004 07:04 PM | TrackBack