Family and Caregiver Schizophrenia Discussion Forum

Walking around house


#1

Sorry if my posts seem very repetitive, just really so,stressed at times, son 25 on a two weekly zuclopenthixol depot, not med compliant though. He was Changed to this after 10 months on paliperidone depot.

The walking around has reached a point where now 9am he has been out of bed an hour and walked around room constantly. When hubby gets up earlier son will,then come in my room, I get no break. Mentioned to nurse who thinks it’s s habit rather than akathasia, now am not so sure.

He won’t do anything from his own initiative, I told him we would havevto get him something to help this but he says no he’s not going to take anything and he is fine.

Surely it’s not though, every now and then while walking, he will walk close to a perimeter and kick out at something whether the sofa, table, or outside it’s our garden fence, anyone help. He reacts when we mention meds as he’s not med compliant. It’s so stressful that I wonder is this the meds causing this and what would he be like without them? I know I’m being repetitive on here.
Oh and son is fine he just says I’m fine with walking about.
As he is on a cto the meds are limited to what he can have as obviously it’s got to be depot. He won’t take clozapine as it requires blood checks, any help is much appreciated , thanks and sorry for same posts I seem to always post.


#2

I understand the symptoms having been there with my own son in the past. For me, knowing my son could not make sound decisions on his health when not fully stable, was what made me get the legal guardianship I got for him so that he really had no choice in the matter because I had final say over everything medical and could (with the doctor) force the issue (either by admitting him or having a home nurse come by regularly, I did both. True he could and did argue and disagree and get mad at me all of the time but even with the guardianship in my favor I had to do a lot of maneuvering at home. I would refuse to give him his cigarettes or his pop or whatever it was he really wanted without his compliance to the meds. When he would be pacing or whatever he was doing that was disruptive or just not within reason I would disrupt it, get in front of him, literally direct him to another activity physically. I remember in those days I often felt like he was my really big version of the 2 year old I remembered always having to get him out of trouble spots and push him in the right direction. Sometimes I would just load him in the car and take him for a drive because it seemed to really calm him a lot. The miracle I saw with my son after a couple years of steady and regular compliance on the clozapine was that when the worst symptoms of the sz went away, (the voices, hallucinations, pacing, major delusions…and when he finally realized what was happening he was totally on board with the meds from that point on, somehow he was able to connect that these meds were why he was free of those voices, of course every day I asked him if he heard the voices and every day he said not much or no I would say “See? that is the medicine working!” and I would give him a a hug" After saying that about a thousand times I’d like to think it helped him to connect the dots. Today he can be trusted to take his meds on time everyday, he got that responsibility last month after about 7 years of compliance under my watchful eyes. He was happy to be trusted. I am a hard sell on trust, sz makes trust so hard…he has done so well though he more than deserves it. So long as you see your son exhibiting obvious signs of his illness and not being fully compliant on the correct meds, he needs yours or somebodies firm and dispassionate intervention, I am not trying to say what to do at all just sharing how I handled similar problems. It’s hard being forced to treat a grown child like a toddler or an infant in some cases but if it gets the child to a healthier place in time I think it’s all worth it. A mentally ill child at any age cannot make the right choices for themselves until they have been successfully treated for a long while and their stability returns.Just my 2 cents worth. My best to you and your son.


#3

Thanks Catherine, and I am really happy your son reached this point, with the firm dedication and patience from you.

I also do this, ie change the routine After I posted this I told him open his windows, get a shower and breakfast would be 15 mins which he did. Later I asked him to have a little tidy up and sort out of his drawers, cupboards , he said no but I insisted and guess what, he was fine, he sat on his bed while I emptied it all and asked him keep it or throw it, ok course most was keep, but that’s ok. It’s much tidier and I think once we got started he was really into it.

Then I told him get his trainers on and we were taking the dog put, again he did it.
The clozapine right now is a no no as yet he declines blood tests, maybe one day.

I asked him did he want some of yesterday left over curry for dinner, he said no, then said “mum you are a good mum, you have been so patient with me over the years, you have put up with a lot”. At times I’m sure he knows more than he appears to show. We are really a long way away though aren’t we.

I’ve just been into my room where he is walking now we are home, he said mum that’s dr at the hospital is a terrorist, he is going to get me to Kabul and turn me into a suicide bomber in NYC . We live in the uk by the way .

Catherine would you be able to tell me what your son was like in the early days, delusions etc and stuff he did/said, no,problem if you would rather not, I understand
Thanks so much for your reply.


#4

The walking - if it’s like my son, it’s constant pacing. At first, it really bothered me - then, he said he couldn’t help it, so I forced myself to ignore it until it didn’t bother me. In the hospital, sometimes I would just pace with him until he’d get well enough to stop.

For him, the more psychotic he is, the more he paces, until he’s literally pacing 24 hours a day.

It’s actually a symptom, with a name - psychomotor agitation, and it’s one of the things that they watch for with him in the hospital to know he’s getting better.

Per the Clozapine - in hindsight, I’d say to be fearless about it if your son goes back in the hospital. My son had the history of non-compliance that made me worry I’d never be able to get him to take the pills even though I thought I’d be able to get him to the labs. I’d never have been able to get him to a good place with the Clozapine at home, but in the hospital they got him there. At first, he’d have some attitude, but I just gave them to him night and day and made sure he took them. Two months in & we’re fine.

He’s also worried about his hair thinning, so we went to the dermatologist & got him another pill for that. Now, he’s happy I’m giving him his meds so he won’t forget to take it regularly. That’s a win-win right there even though I think he’s worried about nothing when it comes to his hair.

It sounds like you don’t have a choice now because he’s ordered to get an injection, but I think those things either work really well for someone or they don’t work at all. And, I think your son is like mine - they just don’t work.

If he had to go back to the hospital, I’d still look into the Clozapine. I kind of wonder how much of my son’s new compliance is also due to my change in attitude. Before, I was more prone to let things be his choice more out of fear & trying to keep the peace. After a year that was mostly hell for both of us, I just can’t let that happen again.


#5

I think at times when I just relax and think what will be will be, it takes a lot of pressure of myself.
Interesting about the psychomotor agitation it sounds exactly like that. I have followed you for a while and so happy things are working like this for you and your son. I also notice similarities with us. Its funny how they worry about things that really aren’t worth worrying about, though its their right isnt it.
Before we knew he was ill my son was so focused on making things right that didnt need changing, he wore a fat belt round his tummy, didnt need it, but now? he is a lot heavier and doesnt bother. He wanted his teeth straightened, again his teeth were near perfect, never had a filling till age of 21, and only has one.
He bought hair removal creams, strips, shrink wrap and wrapped his legs as they were big in his opinion. What I mean is he tried to fix all the physical things that really were fine.

im glad though your son is happy taking the meds and he has actually gave himself the control back.


#6

When they’re sick, their perceptions are off plus they think everyone is looking at them.

If everyone is looking at them, then there must be some reason.

So, they find a reason, and if your son thinks his legs are too big, he probably really sees them as too big.
Just like someone who is anorexic can be stick thin and still look in the mirror and see fat.


#7

I don’t mind sharing anything at all. There are so many memories to draw on, I’ll see if I can narrow it to a few. There were the voices…as he described them to me…1000s of them yelling in his head all the time, mostly calling him names and telling him he had no reason to live. Sometimes he thought the voices were coming from me even when I was quiet. He also saw shadow people as he named them, they lurked all around him and darted around and scared him. My son had a lengthy drug history for being so young, 14-15 at the time, he smoked every bit of marijuana he could get his hands on, stole prescription meds from anybody he could, stole money from me, stole my car once and wrecked it, one time he punched every window out of his bedroom with his fist and found some old lipstick of mine and scrawled in 2 foot letters across his walls “Kill me”, I had admitted into 3 different rehabs at different times thinking that the drugs were the issue, not knowing about the sz then. None of them worked or caught the sz. When he was with me he did so many strange things, he checked and double checked everything all the time, kept windows and shades closed, would unplug everything and keep the lights out unless l did otherwise. He always believed the government was after him. Once, I found a shoe box full of live insects in his bedroom, and I am irrationally afraid of bugs so quite a memory there. All he said was he wanted some pets. I’ve shared before that to this day he sleeps in his street clothes, but that’s a big improvement over me finding him sleeping in his closet dressed for a blizzard in July. Some times when someone uses the word crazy, I think to myself " man, do I know crazy!" But everyone on this forum knows it too. As for the walking, when he ran away from home which was often I would always find him walking along a 10 mile stretch of road, or maybe he was tired and he let me find him but in one case, the shoes I had bought him a few months earlier had worn through the soles and the socks and his feet were bleeding. That’s a lot of compulsive walking. None of these behaviors apply to him today after almost 8 steady years on clozapine. These are only a few of my stories, I have books full in my head and on journal papers I have hidden away. There were many times that my son would refuse to cooperate with something I knew was best for him and I guess it’s in my nature not to take no for an answer when I know I am right and I’m fighting for something I love. I will ask and re- ask the same annoying question 1000 different ways for 1000 days if need be, I will read articles out loud as nauseum about the benefits of whatever it is like when I got him on the clozapine, he didn’t like the blood tests either. I just don’t stop. I’ve been accused of being like a pitbull with a raw piece of meat. Some folks hate that quality in me. My son despised it when he was ill, he wasn’t a match for me in the battles we fought. I’m glad for that and so grateful. Today we are friends besides mom and son, we get along really well. If he became suddenly ill again (God forbid) you can believe I’d be that pitbull once again (maybe a much older and more tired one but you get my drift) I hope things get better for you and your son, sooner rather than later.


#8

Wow is mostly all I can say, how lucky though is your son he was born with you as his mother,
You having amazing strength, but then again for our kids we will fight till our last breath I guess.

The shoebox thing clearly is a very strong memory , funny about 3 years ago I found a shoe box in my sons cupboard, inside was personal protection dye spray, an expensive flashlight torch, a snooker ball in a sock and lots of spare batteries. my son would carry his backpack around with his personal safe in it with all his wallet, bank cards etc.


#9

Yes true, he also thought everyone was looking at him, filming him or taking photos of him, he once said on the train that some japanese teenagers were taking his photo, I said no they are probably taking selfies,


#10

The first time we noticed this was a problem was when he was probably about 13.

We went to the local Chili Cookoff where they would have different bands playing all day.
The seats where general admission and my son & his friend got close to the stage, but not crazy close.
They were probably about 20 or so rows back.

Afterwards, my son said several times that the singer looked at him the entire time.

The few times we’ve done anything like that again, we’ve been careful to not get too close, but it’s still the same thing - he’s the center of all attention.

It’s funny because I’m the exact opposite. I have the idea that I can pass through the world like a ghost, and unless I actually talk to someone, no one will even notice I’m there. Most of the time it’s true.


#11

Interesting, my son started finding fault with everyone at uni, work , everywhere. While at uni he had a part time supermarket job, it wasn’t stressful it got him some cash . He didn’t like working with people, he did same with friends, found fault with them.
Car license plates also were aimed st him, giving him warnings.


#12

I think I read this on here yesterday - -

scholars and madness is closely related - both look for meaning in everything.

That’s not an exact quote - but what I remember.


#13

I see it more when our sons not on the right medicine. But I’ve also seen it on his right out of the hospital from Haldol. And Nurse wants told us it was a coping mechanism (him walking around in circles). Someone from the other form said it was definitely caused by the medicine. I don’t know what you can do about it except ignore it and it’s damn hard to do (some days more than others).
I would definitely inform the doctor and try to involve him in things that keeps him busy. Figure out a way that you can get each other breaks into something good for yourself. In my opinion, This is key to being able to have the patience to handle this illness in our loved ones. I’ve also cut back on a lot that I do outside the house so I’m bot worn ragged. I have a pretty good immune system and sleep pretty well now as opposed to a couple years ago.


#14

Like John Nash, aka Beautiful Mind movie


#15

All these posts remind me of the beginning of my son 's illness. Last 2 years.of high school were a nightmare with suicide theeats, social isolation and on and on. When I first started to realize this might be sz was when he was 19. He thought our phone was bugged, thought I was stealing his dreams, unplugged all electronics thru out house, smashed black objects in house, would put different covers and lamps in and out.of his room and seemed to have 3 personalities. He thought He was adopted and I was t his mother and was lying about it. He would sometimes go into catatonic state and stay in meditating position for about 8 hours. Being a single mom I was scared beyond belief. I was at police station like every day and they were useless He drove a car back then and I was so afraid he would hurt himself of someone else. I only realized this was as after. made a desperate call to Mami. There is more and more, but too tired now to write any more on those beyond horrible frightening.months. Needless to say I was pretty much an unfunctional basket case. Anyways he finally got commited and is much better on meds. Things could be much better but we have come a long way as I look back.


#16

We now live together and never argue and get along very good, there are improvements.that.i hope happen, such as new mess but for now it has been fairly stable.


#17

Writing this on my phone so hope you can figure out spell errors.


#18

I’m really pleased things are much better now for you and your son. It seems to be all of our sons we talk of on here. A few daughters but mostly boys.
My son said to me last week, “mum am I a test tube baby” now from a 25 year old out of the blue it was weird to hear this. I said of course not, he said “was I conceived in the normal way”. I got a bit uncomfortable at that, I said course everything about you is normal .

Before most of this started, say a few years ago he said he was loosing his intelligence, and felt like thoughts were being taken out his head, I had no idea…

He also said something a few times about his dad, he said stuff like, his dad must’ve been a criminal, or from a criminal family or was he even his real dad. I remember before meds at his worst he would point to my stomach and say “did I really come out there”


#19

Yes things are better in that he is calmer and not violent but he still has all the classic sz symptoms. He has bad hygeine, he has no social interaction with any friends, he sleeps a lot and stays in his room most of the time. He gets episodes a few times a week where the voices are overwhelnming and takes extra meds and has to go to bed. He doesn t want to exercise at a gym. But the good thing is that he has good insight into the disease and knows now the voices are just his sz and not real. He doesn t drive do we go.iut a lot to run errands and he is comfortable.going in the store alone if I sometimes wait for him in car. I always have an underlying feeling of anxiety about all this that he may not always be so med compliant and it of course is heartbreaking for a mom to see your smart beautiful child suffer. But things are so much more manageable.


#20

Your sons are suffering from drug-induced akathisia. I know because I experienced it myself. I was on Geodon and Zoloft, and I had the symptoms of akathisia but my psychiatrist told me it was just the symptoms of worsening schizophrenia. When I stopped taking Geodon and Zoloft, the symptoms of akathisia went away.

The only way I found out that it was akathisia is when a regular nurse at the emergency room told me it was akathisia and a side effect of Geodon. Thank god for her! I would’ve never known because my psychiatrist sure wasn’t going to tell me. I went home and looked it up on my computer and the symptoms matched.

Do your sons a favor and look up the symptoms of akathisia and you will see that they match what your sons are experiencing.

It was one of the most horrible experiences of my entire life. I felt so horrible all the time from the side effects of Geodon.