My son 26 is doing ok on aripiprazole , he mentions his delusions much less, they are weaker than they were, perhaps twice a week he will get frustrated and bring them up as opposed to much more frequent.
He goes to his bedroom 9pm every night, he watches tv , you tube etc for a while .
We don’t see him again till noon on a good day when he will get up, can be 1-2pm.
Sometimes I will tell him I’ve made something to eat and he will get up.
It’s during the day though he does nothing, nothing of note.
Walk around , watch sport on tv (lightly) he won’t spend any length of time doing anything.
He will go to gym “if” his dad goes, and he bought himself a bike about a month ago, he’s been on that about 5 times but by default his days are spent at home.
At times he will follow me room to room, it sometimes gets stifling, but all I do is think back to how bad it was then I feel ok.
Not sure if it’s good to do such a thing, but it’s my way of dealing with it.
I guess what I’m trying to say is , could the meds be doing this? Again it’s treading water. Is this how this illness progresses?
On a plus though he is more like himself and what he was like before this illness struck.
Anyone have similar ?
I really think it is more a component of the illness, the lack of self direction.
My son does similar activities as yours does and he is now 34 and is stable in clozapine. Like you, sometimes I feel a little stifled because I am the only person he interacts with…then. I too, think of the past and I calm down and stop the negative thoughts.
What I do is-- I do whatever I want for me in the morning before he gets up, exercise meditate watch a favorite show, or work in the garden…sometimes maybe talk to friends I haven’t talked to in awhile, whatever I choose that is just for me…then when he gets up around 1 or 2 usually he does his thing- which is coffee a breakfast bar and an hour of price is right on the TV…then he follows my lead…which is errands, shopping, appointments, and exercise at the gym or a long walk around the neighborhood or a local park…this is pretty much every day unless I am under the weather and then he just sits and watches TV and goes out every hour or so to smoke outside and looks for things to eat…
I am so grateful that his positive symptoms are gone and that he and I can talk and laugh and engage …I do wish he felt the need to be close to someone else beside me but he does not feel that need at all. Nor does he feel a need to come up with new activities, hobbies or personal goals.
He collects coins and music but really seldom sits and enjoys them so I am trying to think of a way to change that. I recently said to him that I thought that turning the TV off on the weekends and doing something else would be a good idea for both of us and he said that would be too boring but I doubt he really understands boring like most of us do…so I said what about your coins and music and he said yes that is fun and I like it “maybe I can do that”…so I know that “maybe I can do that” means he is about 3-6 months away from taking it seriously…baby steps is an understatement…I am also trying to get my son to go swimming this summer but he is so far refusing to discuss the idea even though he loved swimming as a kid…so that’s another goal I hope to achieve for him, if not this summer then next.
For my son I can see that I can sometimes influence his behaviors and activities but it has to be very slow and steady and methodical and in that way he believes he did it all on his own. Good luck going forward!
Thanks Catherine, so so similar that I’m nodding reading your reply.
Sounds like you are quite resourceful and have made quite a good routine for yourself and your son.
Your son is a lucky guy to have you Catherine.
This also has helped me reading this, helped me to see its normal to feel the way Indo and I’m not alone in feeling that, so thank you Catherine .
My son was similar, isolated, gained weight. Some stays at hospital, when he went off his meds. Today, 6 years later and for at last 1 1/ 2 years, his much better. But still is not working, collects SSD and so he is not motivated. He has a studio apartment in our house, so the rent is very cheap, and he has a car and some friends now
And loves his nieces. The right medication, and dose makes the difference.As you said was much worse before, and we may have to accept what we can’t change.
I am glad my words helped in a small way, I was re reading what I wrote and something else occurred to me that in a way, I provide him with his personal goals, and activities and I motivate him to do them by usually by doing them with him…then I praise him for the accomplishments whenever there are any as though I had nothing to do with it, and he seems to like that…and he seems to not really realize that I am the “batteries” to his “machine” (so to speak)- if that makes any sense. I don’t mind being in that role for him, especially now that I do -do a lot more for myself than ever before and I do stay in touch with friends that I use to neglect because of him…he doesn’t interfere with me hardly at all anymore so the stress is a lot less and things are easier to navigate day to day. I wish that for everyone.
Wow that’s good, he has an apartment, car and some friends, that’s really positive.
My son had the chance recently to catch up with a friend of his (I’m his mums friend too) but no he wasn’t keen, he has known this guy all of his life too.
I’m so similar Catherine. I would do anything and he knows that. I even offered to join the gym (before his dad did ) I’ve never been to a gym in my life ha.
Yesterday I was tired, I asked him in the afternoon would he walk with me to the beach and we could get an ice cream or a coffee, but it was a NO, I asked was he foing to the gym? I asked a few times and then was met with him saying why was I so keen for him to go to the gym? Was it because I had tipped someone off that he was going to be there?
Maybe that was all I needed to hear to back right off.
Thank you.
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Ask your doctor too.
It’s a symptom of the illness known as avolition (lack of wanting). When your dopamine receptors are busted you get no “reward” from achieving things, and you can’t anticipate reward so you can’t get motivated. This was my son’s first symptom. It lasted years and was the thing that wrecked his life for ten years. However, like your son he is on Abilify, which is supposed to be the best AP for treating avolition, and over three years of long-acting injections, he has now recovered so much that he is going to start university and his team thinks that he “won’t have to stay on APs all his life.” We’ll see whether that last bit is true, I suppose. But he did start to recover the same way as your son - by exercise. Weightlifting in my son’s case. I did just decide to accept my son’s lack of motivation at one point. I stopped trying to motivate him and decided to accept that his life would be in some ways “lesser” because of this disease, and then he surprised me by getting better!
Oh and I just remembered that in the early days he spent months playing computer games. I let him because, you know what? Some of those games are hard! So I decided they were probably good for his cognition. Eventually he got fed up with them and I suggested he try reading a book. So then he did spend a lot of time reading, and that helped as well.
Hattie, your comment about avolition is very interesting, and gives me a little hope, as our son’s lack of motivation is “wrecking” his life too. He aspires to absolutely nothing.
I would love to believe that something might change for him in regards to this issue, with continued AP meds. Otherwise, it just makes me so sad to think that our son’s life will continue to look like this in the long run.
We’ve been watching our son lay on the couch and play XBox games for well over a year now. These games do keep his brain active, but he’s finally complaining that he’s bored. Maybe this is a good sign? He’s been on injectables for 8 months.
Our son was a star athlete and a freshman college student when everything hit the fan. It seems like it was a lifetime ago that he was his old self, but it was only a little over 2 years ago.
Thank you, wonder if the abilify injection differs to the oral meds, son was on paliperidone and zuclopenthixol , abilify has been the best for him so far.
My son was at med school when the avolition hit and he dropped out. We had six years prodrome and then a couple of years of on-and-off the APs. Then he was detained under the Mental Health Act for ten days and put on long-acting-injectables. Since then things have really improved. My son did exactly what yours is doing now. And at this point he started expressing the idea that he wasn’t as clever as he was before so I suggested reading and more exercise. At one point, about a year ago, my son decided to switch to tablets instead of LIAs and I got worried because he’s still forgetful but after a week he voluntarily went back on LIAs because he realized he was forgetting to take them. So, gradually he has assumed responsibility for getting the best treatment too
My son actually (don’t know how) completed university . He would say things in his last few months like he felt his intelligence was being taken away. He felt like thoughts were being taken out of his head and his head was all fuzzy.
You guys in the US seem to be so more clued up on this illness, we never really get told much here, here in uk they are more reluctant to diagnose someone I feel.
For our son, it was 2 years of prodromal, a massive psychotic break, in and out of hospitals, on and off meds, then injections.
I know the AP meds didn’t cause his motivation issue because his avolition started well before he started taking meds on a consistent basis. It’s definitely a symptom of the illness.
Hattie, did your son respond very well right away to the meds? I ask this because our son, aside from the avolition, continues to have positive symptoms (mostly paranoia) even while on meds. I’m wondering if drug resistance is a game changer in whether or not avolition can subside.
Hi Jane. During the prodromal phase, our son started complaining to us that he suddenly had developed ADHD. We knew that this wasn’t true because people don’t just suddenly develop ADHD later on in life. We just had no idea what was happening. Nor did he.
Unfortunately, he started buying ADHD meds off of friends, which based on what I’ve read, probably made things even worse.
He has always responded immediately, within hours, to meds but he hates the side effects, such as drowsiness and weight gain. Currently he is very well but is telling me his team says he “may not have to be on APs his whole life” and is angling to come off them step by step. I’ve just been talking to another friend of mine who is on the same meds in tablet form and she really sounded the alarm. She doesn’t believe they said that to him and she doubts it will ever happen. So while I’ve been telling people how well he is, it’s possible that we’re heading for a relapse. My friend was telling me to “supervise” him to make sure he doesn’t relapse. I said if he relapses he can just start APs again. She said ‘avoid at all costs, it’s devadtating and takes years to recover.’ So, yes, he responds well to meds, but maybe that making him overconfident
Yikes Hatty. That does sound alarming. I do hope you can encourage your son to stay on meds, to help him avoid a huge setback. It’s so stressful.
Every month, when “injection day” comes up (like tomorrow), I have such anxiety because I fear it’ll be the day he says “No”. I don’t want to go back to the hell of having him be unmedicated. None of my family does. It’s too heartbreaking.
Do you think his meds are losing their effectiveness, and that’s why he came up with the story that his team said he “might not need them anymore”? Could this be delusional thinking?
Everything I’ve read suggests that Schizophrenia is the one illness that requires life-long medication. It’s so unfair that this happened to our children.
yes Day to Day, it is so unfair and after 3 years since his diagnoses, I still am so sad about my son being stricken with this lifelong cruel illness. I am fearful that my son s meds are not working as well as in the beginning because he is getting more paranoid and socially isolated. He does take his meds and there is so much imoprovement from the beginning psychosis, but he does have a very limited life. Hope all goes well tomorrow with your son’s meds.
Thank you Irene. I think we’ll be OK tomorrow. Fingers crossed.
I worry about your kid too. I remember you expressing your fears when it was time for him to move into his own place. It was such a big step. Everything can just fall to pieces, at any given moment. It’s so hard to know what the right thing to do is. I hope your boy will be OK.
Is this how we’ll live, until we die? It’s just so hard to imagine. I feel like I age 5 years for every 1 year.
