I am at a loss


#1

My son was released from a mental health facility only 4 weeks ago and he is back in the hospital tonight. I used to have some hope. I thought that since my son held a job for 5 years and finished high school before his first break that there would be some chance of him living a some what normal life. All my hopes now are gone.

He seems worse than when he had his first break three years ago. Doctor sent him home on 500mg of clozaril. The doctor tried many different meds while he was there and wasn’t seeing any results. Clozaril was a last resort since he has to get blood work each week (Getting the medicine weekly and blood orders its self is another story) I give him his medicine daily and stand there and watch him take it. Could he be throwing up the meds after I go to bed that is possible. I try to sleep with one ear alert and he says he is not. What if he really is taking the meds. 500MG is a large dose. Am I slowly watching my son lose this battle?

Tonight he started a fire in the back yard using gasoline and oil. I just ran to the store for 5 minutes. The next door neighbor called and said someone had to jump over the fence to put the fire out. I have to work. I am not able to stay at home.

Is there any hope at all out there?


#2

There should always hope. While this illness can be difficult, nobody should be written off. It will not be easy, it will not be quick, but things can turn around in time.


#3

I am diagnosed. I have had one notable symptom in the last two months. This is a serious improvement for me. The most important thing throughout my journey with this illness thus far has been the faith and support of my family and other loved ones. It has taken years to get where I am today and I certainly wouldn’t be here if it weren’t for the love and support of others. As people living with schizophrenia we need help from others, especially early in the recovery process.


#4

My first hospitalization was in 1980. I was 19. My paranoid schizophrenia case was severe to say the least. I got out of a long term hospital in 1982. I SLOWLY improved and after a couple years I was working and moved into supported housing. Everybody thought I was stable on my medication. By 1984 I thought I would never be hospitalized again. Well, in 1988 I relapsed. Badly. And I was taking my medication as prescribed. I was hospitalized 5 or 6 times in rapid succession. I couldn’t work. More misery for almost a year. I slowly improved again. I now work part-time and live on my own. I haven’t been hospitalized since 1990.


#5

I was written off by two different doctors early on in my illness. Was also told that the best I could hope for was to have my symptoms managed and my discomfort alleviated somewhat through medication. Was told that I would never have any of the ‘normal’ things I wanted, such as a wife, children, an education, and a career.

I’m now in my mid-forties. I am relatively stable. I am med-compliant. I just celebrated my 14 year wedding anniversary. My daughter – who is awesome – turns 13 next month. I have racked up some noteworthy professional accomplishments and I am definitely doing well in my chosen fields. Most importantly, I participate in and have the trust of the community I live in (e.g. 4-H project leader).

Not bad for someone who everyone wrote off and who seemed to spend more time in the hospital than outside of one for the first couple of years after being diagnosed.

So, yes, there’s hope. Especially when your son has a caring parent there willing to help. :smile:

10-96


#6

Thank you everyone. It truly helps to hear from you!!! Please know by reaching out and responding you make a huge impact on us caregivers. Your words have given me hope. Its hard not to get discouraged sometimes. I appreciate your support!


#7

The way people respond to the medications can be unique. If some people take 50 mg of trazodone they are knocked out for twenty hours. I took 4500 mg, and it didn’t do anything to me. One guy I knew could take any amount of stellazine, and it didn’t do anything to him. If I take just a little bit of that I go to bed for fifteen hours. Keep working with the med’s. Surely you can find some medication that works for him. Also, you might try to find a group home for your son. I am writing to you from a group home now. If you do go this route you’ll want to shop around, because the quality of group homes varies. These places are not resorts, but the quality of life where I’m at isn’t bad.


#8

I know that I doubt my son taking his medications when I can’t see him taking them. Sometimes symptoms can be resistant even when on the right medication. It doesn’t sound like your son has been on Clozaril for very long. I know with my son’s last hospitalization that even after a month (released after 3 weeks) of being back on 450 mg of Clozaril and 1 mg of Risperidone he was still not stable. It takes time for Clozaril to build up in his system and even though some result can be seen short term it can take up to 8 months or more to see all of the positive results start to build up.

Sometimes a cocktail or more then one medication is required.

Do you know what your son’s intent was in lighting the fire? My son doesn’t always see the consequences of his actions.


#9

Hi Ohio!
I also work fulltime with not much support. A
long time ago I got FMLA from work so that I could leave there whenever I needed to without it hurting my attendance. My son was also hospitalized more times then I can count. I really had to gather so much info. from doctors, nurses, police, etc…
This is a hard road!! It would be good for him to be in a good group home for awhile. My son also started a fire in the attic when he was very young—not sure if it was on purpose.
It would be a good idea to get him into some kind of housing since you are working and alone.
Here is the hope—your son will mature in time, and with that, insight. Things will get better. There will always be good days and bad days.
Get all the support you can—you need it also OO.


#10

Hi Barbie,

Yes, its all part of his delusion. He said his fiancé (which he hasn’t had a girlfriend in 4 years) came in and planted these lucky 13 leafed clovers. The clovers were rare and are not found any where else on this earth. He started the fire to keep the bugs away from destroying them. Neighbor had to jump over fence and put the fire out since it got rather tall. I had just left to go to the store for 10 minutes.

I always stay and watch him take his meds. In fact I keep them in my purse so he doesn’t throw them out in case he stumbles on them. Only using past experience but typically I would see him get better the longer he was taking the new medication. In this case, he seemed to slowly get worse. He was in the hospital for 5 weeks and was hoping with all of the different combinations they tried would see him improve slowly. I can’t guarantee that he didn’t throw the meds up a couple hours after I gave them to him but typically, I am pretty alert to what is going on while I am sleepy. Was hoping the doctor could determine if the meds were still in his system when they did blood work last night. Hopefully, I will know more tomorrow.

Thank you for your support, I know you are always there to help others.
Anna


#11

Thank you very much. The social worker at the hospital said it would take 1 year to place him in a group home. Do you know if this is typically how long it takes? I am really thinking of going down this path for a couple of reasons. 1) So he can socialize more with other individuals. Right now he stays in the house and only goes out if I take him. 2) Maybe it will provide him more structure. Mom’s tend to give in more than others would. and 3) Hoping my relationship with him would be less stressful and more helpful to him.

Its seems these last 3 years all I keep doing is trying different things in the hope that I will get something right in order to help him.


#12

I’m surprised no one has said this yet.

You need to get out of the house. Not move out of course, but go have dinner somewhere you like. Or a movie. Heck rent a hotel room and have a bubble bath. Whatever.

Is there anyone you know near you who is competent and who you trust who can stay with him, even if it is only for a couple of hours?

You sound really stressed and I have heard a lot of caregivers here talk about being afraid they will get burnt out. It can happen.

Also, have you tried giving him his meds in the morning? My doctor tells me to take some stuff in the morning and some at night.


#13

Yeah-1 year sounds about right. your reasons are good for the group home idea. Are there any other group homes he can go to? i would also check out any homes that are available, some are not so great. My son was also in a few halfway houses. He was kicked out because of his substance abuse and he would not adhere to curfew.
I would go ahead and put him on the waiting list-but can you wait that long?
Can you get a the social worker to look up anything else-----maybe a peer to peer group might be work until he can get in the group home…


#14

I guess getting into a group home it’s different from when I was in one from 1990-95. Maybe the procedure is different in different places in the U.S. I needed a place to live in 1990. I was in a temporary Residential Treatment Home at the time. A counselor gave me a three page list of every Board & Care in the city. He pointed out to me the best one in the city. I called them up, they had a vacancy and I moved in within a week! And I must say that the five years I lived there were my most productive years with this disease. I was catching a bus to and from work, I was catching a bus to college, and I was catching the bus to 5 or 6 AA meetings a week.On weekends I took a bus to my sisters house and we would go to movies or play volleyball at a bar etc. After work I would walk to my parents house and do yard work and have dinner with them. I was also going to AA functions like dances and picnics. And I was going to dances at the local church. Sorry, I didn’t mean to hijack this thread.