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Doing nothing all day long


#1

I know I should be happy its much better than it was but at times its so frustrating.

My son 25, on paliperidone for 6 months now, he is much more amiable, happy to be with me , too happy at times to be honest.
He will get up, shower and have breakfast about mid day. The rest of the day is spent literally doing nothing, walking about upstairs, then coming down, walking around down here, sitting down for a little bit then up and walking about again.
He wont go out without us now, not even to walk our dog which he did before, he hasnt been out for a week.

His nurse is always trying to get him involved in the social group , young people his age with early psychosis, they go to cinema, bowling, play sport etc once per week, but no he isnt interested, he isnt interested in meeting her out of the house for a coffee etc either, nope she has to come here.

He will come into my room at times and lay beside me if say I’m having respite reading, watching tv, i pad etc.
Im getting increasingly frustrated , I know Me and his dad are really the only ones he interacts with right now, expect for Dr and his nurse etc, (he does bare minimum with them) just what he has to, he is currently on a community treatment order to take the depot as he has little insight.

He will do the odd chore if I ask him like vacuum the stairs, feed the dog, dry dishes etc, but not going out is getting to me. He is in the house every min that I am in. I go out every day, not working right now but I do chores, shopping, walk the dog , meet friends etc, but soon as Im home he is there , I know i sound awful, I don’t mean it, but just at times I need a break, Up till last week he was as soon as I got out of my bed he was going in to it and closing the blinds again, making upstairs so dark I couldnt see when I went back up. I put a stop to that, I can’t breathe it feels at times .

I hear the floor above me creak constantly with him walking around upstairs, I ask about the meds, but he wont entertain changing or altering or anything, he keeps saying. its fine, I’m fine.

Anyway thanks for reading, any one else have similar ?


#2

We’ve had times like that. My son says the dark is safe and comforting sometimes.

It sounds like he finds your presence comforting and reassuring. I know it can wear on your nerves, but no matter how tired I get of it, I find that the times when he doesn’t come out of his room at all or speak to me even worse.

My son has what we call terrible social anxiety, but I saw a video once that simulated how schizophrenics feel when they go into a store. It had a young man going into a drugstore I think (wish I could find it again) - not only did he hear people saying all kinds of things about him, he saw faces lunging at him and being distorted, etc. I’ve can only imagine what it would be like.

Before this year, my son wouldn’t have much to do with groups that included other people with MI. He either felt they would be much sicker them him - or not nearly as sick as he was - kind of like he was stuck in a unique middle place. He hasn’t gotten up the nerve to go to the one we have here since he got out the hospital a few weeks ago, but he says he’s thinking about it. He did say he thought it would appreciate it more now. I think because he participated in groups at the hospital, he’s not as scared of it now.

Doing nothing … I’m not sure they’re doing nothing just because they look like they’re doing nothing. The brain needs a lot of rest to heal, and on the other side, I think they have a lot going on inside their head. Maybe it takes all his energy to just keep things under control?

My son is going today to get his 1st monthly shot after getting out of the hospital and he still has good days and bad days. Some days, he barely gets out of bed. Then, we’ll have a day where we have a good conversation and he offers to help prepare dinner with me so that he can contribute - his actual words. Overall, he’s much, much better with the shot, and I’m hoping for the slow gradual improvement that so many other people have talked about because he won’t do any kind of oral meds right now. Could it be that he needs a higher dosage on the shot?


#3

Thank you and yes I do agree with what you say. At times I count my blessings then other times its like this. Hes on 150mg which is pretty high I think. What about your son?

He has empathy for those who were in hospital with him and because some of them were suicidal he thinks he is fine as he isnt like that.

Thank you for making mea bit more aware again. I get to hug him every day now which is good. I must sound awful in the 1st post. Hope you are doing ok? How far has it come for you guys?


#4

My son is on 117 mg/month, but it’s his first monthly shot.

I noticed some break through delusions last weekend and was able to get him to take some Invega pills in a sneaky way I have for a few days, and he seems better - but the social anxiety is out of control.

I’m still waiting to see if he needs more, or if it’s still just taking hold or what.

But, he’s came a very long way in a very short time and I remind myself to be grateful.


#5

Thats good, so does your son have pills as well as the depot? mine only has the depot,
He is so much more calmer and closer to me, more content, but he doesnt equate it to the meds, he says its being home and having family and appreciating things and people, I remind him he has always had all of those things anyway and before it all got bad he had all that.


#6

@Jane57 Yes, I understand completely, I have heard this on this forum from others many times and I usually reply the same…6 months on a successful medicine protocol is GREAT and promising --but not long enough to invoke long term behavior changes like engaging in activities and venturing out and thinking or directing more for one’s self. It took my son more than a year. after the meds started working really well…to see anything really noticeable in activities…besides sleeping, eating, smoking and watching television. It’s like with everything …you try gently and frequently to test the waters and never stop…'would you like to go for a walk with me today? …or whatever the activity…it’s baby steps all along the way and then when you finally get a “yes” and things will start to move but always at an excruciatingly slow snail’s pace and you learn to be happy for those tiny baby steps you eventually see…but it depends on not giving up…trying and inviting and testing the waters on different things, thinking outside the box…letting your loved one lead the way on what he can tolerate…and always making it okay to be or do what they can be or do on any given day. :bouquet:

PS: In the very beginning my son had a case manager who would come every couple of weeks and pick up my son and take him out for a cup of coffee or sometimes just window shopping…just to try to talk with him for a couple of hours …the case manager said my son said very little and would just follow him around (pretty common) but I got a respite while he was gone…and got to feel what it was like to just be me alone with my thoughts. I am a single mom but since you have a spouse maybe sometimes you can “tag team” so to speak to give each other respites…just my thoughts…


#7

Thanks so much Catherine, and yes they are good thoughts and ideas, I love this forum, everyone seems so understanding and even for me that’s really unknown and now I feel it’s ok, it’s “normal”. Hope your son is doing good. Thank you.


#8

Thanks…and you’re welcome…I love this forum too. Today I can say my son is doing very well…He still is not very outgoing…But he has his moments…And he is willing to do anything I do and he is a good companion…In addition he does well enough on his own that I can leave him for a couple of hours a day without expecting any major problems when I get back. It’s taken several dufficult years to get here…But so worth it. :smiley:


#9

I’m pleased to hear this Catherine :smiley:


#10

They want him to take the pills along with the depot injection for at least the first month, but he won’t take them willingly. They said the shots would still work, but it would just take longer.

So, I’m getting them in him when & how I can - but it’s not consistent.

My son says the shot doesn’t do anything. It does a lot in my opinion. He’s also calmer and happier, but he’d say he was just fine before too.

But, he doesn’t have any side effects other than increased appetite (which he hasn’t said anything about yet), it’s only once a month, and we’ve been very positive about the benefits of a monthly injection even before he started taking it - so he’s willing to take it so far.


#11

You didn’t sound awful - you sounded normal :slightly_smiling_face: My hubs and I have been through so much with our son for the past 7 years, through so many phases, the worst being the last couple of years when he was doing heavy illicit drugs and not properly medicated. Every day was a horrible day and I longed for the days you are describing with your son. Don’t get me wrong though, I totally get what you are saying, I’ve been there too. We all need a break, just to renew our spirit and our minds. It’s so difficult.

One thing I’ve noticed with my son is that sometimes when I’m just upfront and straight with him, he doesn’t seem to mind. He actually takes it very well. I’m always so afraid of hurting his feelings that most of the time, I hold everything inside. Maybe you could tell your son in a straight but kind way that you just need a little time to yourself every now and then (?). Fingers crossed that you will figure out a way to get your much needed me-time. (hugs)


#12

Yes that’s why my son is ing the depot as part of a community treatment order as when he was discharged his dr didn’t think he would comply with meds.

We are in the U.K. My son has increased his appetite too, it’s tough seeing him not actually care about what he eats when he used to be active and into fitness etc. He has probably gained 10kg or more.


#13

Thank you, and yes I think it’s similar here. I can be straight with him and the backlash, argument doesn’t come from him like before. I keep thinking it’s too good to be true in that respect…

He is at the minute very amiable. Which makes me feel stronger.


#14

Hi Jane,

My son is 24 and has been on Invega Sustenna since May. He’s still improving every month. I see progress. I know exactly what you mean by doing nothing. My son walks a lot. I think some of that now is the medication that makes him kind of antsy. He doesn’t hear voices - that’s why he used to pace. But besides eating, when he’s alone and not with me, he just doesn’t do anything. Sometimes he watches a TV show, but that’s it. He has all these art projects around him (he was an amazing artist before this hit) but he doesn’t touch it now.

He also is very clingy to me. Any time I want to leave the house, he wants to come. I feel like I’m suffocating sometimes. I love him more than life itself but I can’t deny how I feel sometimes. I was a few years away from retirement and now it looks as though I have another full-time lifelong job. I feel so ungrateful when I feel this way as my son is SO much better than he was in May. It’s a long story, but in May we thought he was in the woods somewhere dead. We had a missing persons report out on him and the family was looking for his body. It was something no parent should have to do. It was horrible walking through the woods hoping you would find his body but then hoping you wouldn’t. We were pretty sure he wasn’t alive. We were wrong, thank God!

Today he’s mostly happy (but still a bit moody), living back at home, showers a few times a week, still sleeps in his clothes, eats too much and gaining weight, but he is all there. And he really is improving all the time. Sometimes I cry and wonder what I did so wrong to deserve this and for my son to have this life, other times I feel like one of the very lucky ones that got my son back! I understand everything you wrote. You don’t have to feel bad for feeling smothered. It’s okay.

And I try to be hopeful that someday they’re going to come up with a cure for this awful illness. The medications are going to get better and better. Our kids are young and if we can help them stay as healthy as possible until this happens, maybe…maybe someday, in five or ten years, they will be much more independent and living a happier life. Hang in there. You’re not alone! ~~ hugs ~~


#15

I have noticed that my son seems just as happy most of the time to eat health stuff as junk on the shot, so I am working on making sure we have enough healthy stuff that’s easy to grab and I hoping that keeps the weight under control.


#16

Slw, the other night our son had a terrible episode in the middle of the night. It was about 2:30 am and I told my husband to get his pants on, we’re going to the hospital. My son said I guess I’m going to the psych ward again like he was in agony. I went and got his meds and followed him around, waiting till he circled back and the second time I offered it, he took it. The next night he also took it, and the next night and just now. I do wait for as late as possible and it has now been four consecutive nights.
He does need to be on the injection but I’m grateful that at least he is taking his meds. Good news there.
He does smile and I think it affects the Zyprexa.
Don’t give up and keep trying. Be firm and loving. It is hard because they are adults but I think they need us to set limits for them just like when they were young.
He has gained a lot of weight and as soon as it warms up, we are getting out and walking.
I hope everyone sees some improvement this week and shares it with the group. My hat to all of you doing it by yourself or with a partner. This is hard work but a labor of love.


#17

My son now 42 is after 15 years becoming well- yes truly !
I read a book called Niacin the real story - Dr Abram Hoffer after my son attempted suicide ( took and overdose of clozapine) and I nearly lost him. For the last 5 years he as been as some of you describe - in the house with me and more and more unwilling to face social situations. The voices were sometimes almost unbearable for him -a voice told him to kill himself.
I almost ran to the herbal shop to buy niacin ( didn’t even finish reading the book LOL) because I recognized straight away that it was a true therapy.
He’s now been on 3gms niacin and 3 gms vit c per day and dping very very well. He’s now started to take the initiative for conversations and is taking an interest in the future. I consider every little step huge step forward for him. I’ll keep you updated


#18

So sad for,you,to go through this. My son ran away when they were trying to,persuade him to go to hospital, he jumped out of his bedroom window and it started a police search. We live by the sea so,we could hear the helicopter out looking for him too. It was horrific. I used to think “this will only be over when I die” as I couldn’t sneeze any way out of it. My heart goes out to,you.

Ahh Julie Ann, I can so relate to you. Hang in there. Where do you live?


#19

I’m glad your son took his meds. If he can tie that to staying out the hospital, maybe he’ll take them often enough to stay stable.

Unfortunately, mentioning meds too often to my son is the only thing we argue about at this point in our journey. So, I’ll mention it in passing, but only if he brings something up and not every time.

It’s nice to have some peace in the house, and I’m just going to let it rest for now since he’s not saying he won’t get the injection.

He just got one on Friday. He likes the nurse at the mental health center who administers it and they don’t make you wait too long. He said she was better at giving the shot that the nurse in the hospital - he agreed with a shot fast but not rough hurts way less than trying to go slow. That’s been my experience as well.

So far, other than some weight gain, he’s not having any side effects, so maybe this will continue. He does want to get on disability and maybe try moving out, and I’m tying the fact he needs to be in treatment to both things.

The bottom could drop out at any minute, but I’m going to roll with it while I can.


#20

I guess it was too good to be true. After not sleeping well for two nights he admitted he had not been taking it after all. I guess it is only time and he’ll be back in the hospital.