Family and Caregiver Schizophrenia Discussion Forum

New here and need advice


#1

My 26 yr old son was just DX’d after years of struggle. He had a psychotic break when he was 19 after a failed year at his first year of college. He started with delusions that my husband and I could see this past July - when we first got the police involved. Unfortunately the threshold wasn’t met for an involuntary hospital admit because he wasn’t a danger to himself or others. We had another “opportunity” this past Dec and we was taken in by police for an involuntary admission - which lasted 3 weeks. He was at a halfway house for 5 days- which was a nightmare- and has been home ever since. He is on a 90 day "commitment " by the county we live in and is now starting to push back on taking the "side effect " meds. He gets an injection every 2 wks (typical antipsychotic) along with Seroquel (500mg) tabs at bedtime- and anti anxiety med 3 times a day. I got him to his first Psych doc appt last week who is keeping the same meds onboard until his next appt in early March. The 90 day commitment ends 3/20/17 and I’m already thinking this may be too short of a commitment. Can the county extend the commitment if he’s being compliant- but unwillingly? He lives with us and doesn’t work but have gotten all of the paperwork in for SSDI. I’m exhausted and feeling like I’ll never get a handle on the SZ world my husband and I are in. Any advice would be welcome…


#2

Dear Mary, Welcome here.

My advice to you is to find out whether or not the commitment can be extended. Start now because you have about a month to six weeks to act, depending on the laws where you live.

Dealing with the “system” is overwhelming, confusing, and unclear. We just have to do our best for the people we love.

In the long run, chances are strong that your son will have a good recovery, but it is a long run. Lots of people on the forum say, it’s a marathon, not a sprint.

I hope you are able to take care of yourself and rest when needed. Have you been to a NAMI Family to Family class or a NAMI Family and Friends support group? The 12 week class provides education and the support group is for emotional support, also some sharing of resources sometimes happens. Some NAMI chapters have referral programs or possibly members who have been through what you are going through and might (maybe) offer information you can use: https://www.nami.org/Find-Your-Local-NAMI

Hopefully you will find ways to keep yourself nourished, nurtured, and cared for. Your strength and endurance will help you and your son. If you find yourself struggling, step back and rest, wait, think about something else, do something you love… When ready, you can return to supporting your son’s recovery.

Best to you.


#3

Thank you for the great advice. I will be signing up to NAMI FAMILY To FAMILY when a new session starts. I have been reading a lot here for a few weeks getting info from all of you that had been very helpful. Just having a hard time knowing what to expect from one day to the next when I get home from work as my son wants to work but has to get thru the DVR process. I think once these preliminary things get settled with SSDI, new doc, getting a job (if able to work), getting on board with his new case mgr, etc things will hopefully feel a little less stressful. The “marathon” of dealing with this is so new to me that I know I have to take care of myself along the way. I can see every week gets a little easier so I have to stay positive in a very uncertain world.


#4

So glad you are taking care of yourself Mary, that is really important. The day to day differences are tough to get used to aren’t they? Before we knew what was going on with our son I had experienced such differences while visiting my MIL in her nursing home regularly. Her vascular dementia had the same properties in that she could be so different from day to day. I just went along with her, it was good practice for later as it turns out.

When we were leaving the psychiatrist’s office after consulting for his opinion on our observations regarding our son, I was pretty down. Our son’s prognosis is not good. The doctor looked at me and said “There is hope, some of them do get better”.

Hope is nothing and it is everything. The best thing is that this hope for our family members is real.


#5

You can try speaking to the doctor. Usually a judge visits the hospital once a week. Get the doctor to set you up with the judge and speak with him/her about extending his time there.


#6

I’ve spoken with psychiatrists who say that if a family member calls them (they can’t tell you anything about the patient due to confidentiality laws - but they can listen to you) and tells them about some concerning behaviors or thoughts that the person is still having and you ask for them to extend it - then they will. Of course - this is on a doctor by doctor basis - but they really do want to help people usually so they will try to accomodate the request if the person is still psychotic.


#7

Good idea about informing the new Psych outpatient doc. I have been communicating with his Cty case mgr about various things daily since she was assigned to my son this week and she has stated she will let the doc know on a couple of things already (e.g. Side effect concerns etc)


#8

That’s funny you mention about how this could be similar to other health conditions like dementia as I was just thinking if SZ is similar to it. Good to use this as a comparison to some family members who don’t understand the roller coaster nature of SZ as they think he’ll be fine now that he’s on meds. From what I’ve read so far the meds don’t necessarily guarantee a person will be able to live a normal life- that it remains to be seen with a newly treated patient like my son.


#9

Schizophrenia used to be called “dementia praecox” as in “premature [or precocious] dementia”


#10

Did they actually ever get dementia? I see my fiancé with a lot of memory issues, so that worries me a lot.


#11

My husband’s grandma had early onset Alzheimer’s and so did a lot of her siblings so in the back of my mind I have to wonder if this may be part of the DNA connection to my son developing SZ?? Lots to figure out and speculate on…


#12

It’s just an old name for the dx that later becomes schizophrenia. Not the dementia associated with old age.


#13

Was just curious if it was because of any similarities. It’s bad enough with all the disorders he has, I just don’t think I can deal with that if it ever transformed into it.


#14

@Doctor. Do you live in the states? I had no idea that Judges visit hospitals.


#15

I do. I’m actually right here to pick him up since the doctor was out, I couldn’t talk to him and they wouldn’t let me talk to another psychiatrist because it wasn’t their case.


#16

In our state, judges never go to hospitals. They don’t even have video court for involuntary commitment; police escort people who have not committed any crime to commitment hearings in full shackles.

In some US counties (not whole states), though, judges do go to hospitals for commitment hearings. Which seems like the best way to me.


#17

I’m in Florida, but they do have judges and cameras within the hospital outside and inside that can be submitted as evidence. I remember when I was in the hospital when I was 15, there were two cases that were severe and the judge came in and took one into protective custody for 6 months to another specialized facility and the other one into another facility due to trying to find a way to commit suicide every day.


#18

Interesting. I never knew that - learned something today. Thanks


#19

Wellllcooomeeee!!
_\\~


#20

I saw a documentary on Bellevue - they have a courtroom at the hospital.