Family and Caregiver Schizophrenia Discussion Forum

Are you interested in sharing what does and does not work in caring for someone with schizophrenia disease?


#1

Our son is 25 and was diagnosed about five years ago; we’ve spent a few years grieving and in shock and supporting his addiction to marijuana which he felt was better than his medication. Yes, true, we were enablers big time. We just started changing the tide, we pray and believe is true, and cut off the money and things escalated and our son tried to kill my husband. Now we’re learning to put our safety first for our son’s sake.

I’m interested in learning:

  • Strategies to stop enabling for the long-term (he’s out of our house for now and headed to a rehabilitation program - which is a great thing) but it’s not a long-term.

  • Medications that worked better than others or are new innovations. He’s on Risperdal and he’s still completely delusional.

  • He just qualified for Social Security. What has worked with getting help in education, training or college with these benefits or other strategies?

  • How do people with the disease implement ways to self-monitor - friends that coach you?

I’d be extremely appreciative for those with the disease and families to share ideas.

Hugs and love - Amy


#2

I am sorry that you are going through this. Yes, safety first. What I have written below is related to my experience as a family member.

Since each person diagnosed with sz is different and will have different goals and needs for support once there is stability, I think the most important aspect is to make sure our “caregiving” actually gives care to the individual person. So every family and friend needs to find out what their loved one dx’d with sz wants. That said, I support all healthy activities of my family member that I can support practically.

The advice to “lower expectations” in the acute phase of illness helped me. I stopped worrying about my family member’s lack of job and education and started to make sure food was being eaten, etc. As far as “enabling” goes, my family member was kicked out of the house for disruptive behavior. I don’t know whether this was the right choice, but I was trying to get some sleep. I still fed my family member and brought them clean clothes plus other things they wanted, so I didn’t abandon. The psychosis went on unabated because I didn’t know what to do when my family member refused to go to the doctor.

I do not believe enabling or codependence is relevant to medical illness, but, yes, would apply those principles if there were a drug or alcohol problem. If my family member chooses to “self-medicate,” they have to move out. And yeah maybe become homeless, but I cannot bear seeing someone I love so much harm themself.

My family member currently chooses not to take medication. I have heard anecdotally that Invega Sustena injections help some people.

If family member has benefits or employment or education opportunities, the social worker who is in charge of case management should coordinate this with family member’s goals as guide. Parents or others can be supportive, but need to give only support that is requested. There’s Voc Rehab, Ticket to Work, training through the Department of Labor, all kinds of programs to force people into and then they drop out because it wasn’t their choice or they were not able (I learned this from experience.). Also, it would be really beneficial to get neuropsych testing to see what actual cognitive differences there are and make sure these are addressed and accommodated prior to and during job training or other education.

I wonder what you mean by self-monitor?


#3

Here and Here,

Thank you for your response and your ideas are very helpful to me. My reference to self-monitor was based on the John Nash book, but the term I made it up. He had different friends that would let him know if they thought he was not taking his medications.

It sounds like you have strong limits which is something we have not done but now we need to do it. Our son is addicted to marijuana so that’s why I referenced enabling and codependence. I do, however, think that there is an enabling we can do, regardless of addiction, that is relevant to mental illness. Namely, if we don’t help them to find resources to get a job to pay their bills then what will they do when we’re gone. We’re working this one. Likewise, I think you can be so sad, for so many years, and I assume many people don’t ever pull out of that mode into action which I understand completely.

I’m interested in learning more about what is Voc Rehab, Ticket to work … I agree it has to be what the individual will commit to. Who typically does neuropsych testing?
Thank you again BIG TIME :slight_smile:


#4

I don’t know.

Hopefully I will be able to list off those resources with some links. According to Early Episode Psychosis article I read, “Psychological and especially neuropsychological testing is important for ability of functioning and strategies for return to school or work.” This would be done by a psychologist or neurologist.


#5

Is your son connected with your local community mental health service? Your son should be assigned a case manager, who should help with all the things you ask about.

In my experience, the helpfulness there varies greatly. I think the biggest factors in the variance are - 1) your son’s interest in getting services, and 2) their interest in finding services that really match your son’s needs. Quite honestly, since my son doesn’t see himself as sick, he doesn’t see a need for the services, and has low interest in engaging, and the case load is so high that the case manager really doesn’t focus on my son’s needs. Second, the programs available in the area admittedly can be more focused on a different demographic than my son is in, and so they are not very interesting to him anyway. Kind of a catch-22.

Regarding medications - of course the first question is, is your son actually compliant and is he still smoking marijuana? Can’t expect much from the medication if he is either non-compliant or using pot. After that, then it sounds like it might well be time to discuss a change in medications with his psychiatrist. Since the success of any one drug is so individual dependent, I won’t recommend any one thing, but working with the psychiatrist to try other things is the only way you an find out what will help your son most.


#6

Our son has just been approved for SSI and Medi-Cal which I think will take a month for us to get the information in the mail and processed but that is a blessing. Yes, we’re connected to our county-run mental health team including specialists with Laura’s Law. Yes, he does not see the need so what you described is happening. I keep telling myself this is a lifelong journey so I’m focused on finding our resources and building good expectations but knowing that many of them may be down the road, which I hope does not happen, if he has another crisis.

He’s never been completely compliant with his meds and we did cut off the money so he can’t buy marijuana and he’s in a Crisis House now. I think we’ll go for the Independent Living homes for him to move out into and the outpatient program for addiction/mental illness with our insurance provider. You’re right on — it all depends on his being ready and willing to kick his addiction. And, I get it that it’s a disease but we’ll not financially support him if he doesn’t stay clean. I think the road ahead is tougher but it’s time for our wonderful son to have his shot at figuring out his purpose and tackling his addiction. If he gets arrested, again, he’ll be in jail for many years. I can see how that happens so easily so we need to be firm on boundaries to do everything we can to support forward albeit super slow progress.

Interested to hear from anyone who tackled marijuana addiction and what made them do it too. Thank you Vallpen…communicating honestly helps :slight_smile:


#7

I also spent a long time grieving. My experience with sz started with my son attacking me. It took a long time for me to get over this attack. PTST was bad. After several months of depression I finally realized I needed to fine a new normal. Because of the attack my son knows if he is not on meds he cannot come around me without another adult being present. When he attacked me he was working but lost the job. It took me 3 years to get him back to work (part time but better than nothing). It also took 3 years and a trip to the mental lockup in April to get him to take meds. He does not like them but has now been told by his girlfriend that he cannot live with her if not on meds. I have had problems with him experimenting with marijuana and mushrooms. I have told him that his brain chemicals are already out of wack and these drugs only make it worse. Luckily he only does them once in a while but still not good for him. I am very lucky that he has a good set of friends that have not abandoned him but been there for him and me both. One thing I do is to be completely honest with him about his illness. If I think he is not acting right I let him know. My biggest problem is not him but other people who just think he is lazy. They cannot understand that the sz makes him think he does not need to work. I have been dealing with this for almost 4 years now and it does seem to get better over time.


#8

My son went thru a period of frequent marijuana use, and used several other things, but that was prior to his diagnosis 8 years ago. He has thankfully shown little interest in using in the last several years, and has acknowledged that it messed him up. He tried alcohol for a short time, but I quickly cut off his access to any means of purchasing it.

I don’t have current expectations that my son will work in the near future. His delusions and paranoia still intrude in his daily life and social interactions too much - medication has mostly controlled psychosis and voices.


#9

Dontforget623—

Okay, I have to ask. What do you not want to forget? :slight_smile: It is horrible to have been attacked and to not feel safe with your son. Our son held a knife to my husband’s throat a month ago and landed in jail. That’s great that you got him back to work. Part-time would be awesome. What resources or strategies worked to make that happen?

How are you completely honest with him about his illness. If he’s speaking delusionally, do you tell him? Our son is taking his medications but he’s still delusional. I agree about other people who think they’re lazy - they are absolutely ignorant but it’s a real issue.

You have a great attitude…way to go!


#10

amylpeltekian,

I would have to say the only thing I would want to forget is the attack on my life. My son tried to stab me in the back of my head but only got scull so no real damage was done. He too went to jail until he they figured out he was sz. All charges were dropped.
The only way I got him back to work was to keep bringing up the subject at every opportunity. Car breaks down: If you had a job you could fix it. Note I did not keep on him all the time just when ever I could get it in. I also told him that it was his illness that makes him think he does not need to work.
I am honest about his illness in; if he is not acting right by showing early signs of an episode coming on I just tell him I think he is going into an episode. If he says something that does not make sense like one time he said he watched a rain drop turn into a frog. My response was do you think that this is a normal thing that happens. His response was he believed there are different realms to life and in the one he goes to this happens. I then said that in the world we live in this is not normal and then I drop it. I don’t keep trying to convince him as it will do no good. I try not to be confrontational. If the conversation goes in that direction I change the subject. I also do not preach to him but get a word in when I can.
One more thing I do is to apologized to him for all he is having to go through. Especially now that he is on meds and does not like it one bit but is sticking with it for now. I also praise him for taking the meds and sticking to them even though he does not like them. I listen to him and his concerns and not just express my opinion all the time.
It is a fine line we must walk with the sz person in our lives. I just take it one day at a time and have also done my research on the illness itself; which is why I know every time an episode is coming on now. My best advice is to take it one day at a time and be patient and caring. I know it can be hard sometimes and I must say I still miss the son I use to know. At the same time I still love the son I have.


#11

Dontforget -

I’m sorry that you were attacked by your son; our son held a knife to his throat a month ago. I think my husband and son are still in shock over it yet it was followed with jail and a crisis house. Now our son is moving into independent living. So we’ve been so busy and shocked that we’re just taking one step at a time.

I like your ideas and I think they’re right on. It is a lousy thing to happen to them. Today I was with my son for a few hours looking for his new home and we found one. He was, however, completely delusional the entire time. He believes he’s a billionaire. I think that’s a good way to ask do you think that’s a normal thing that happens. He was so anxious about the new home that I didn’t risk it today. I’m looking forward to getting him into therapy and the addiction program to get professionals help on how to talk to him when that occurs. I hope he doesn’t get expelled from the new home.

I get what you mean, I deeply miss my son that was and I’m learning to love the son that I have even more. Hugs and love.


#12

Vallpen,

You’re always very helpful and I like reading your responses. What does your son do with his day? I’m fishing for ideas :slight_smile:


#13

That’s one of my son’s new delusions!

And, I’m just stupid for not knowing/believing - not that I tell him I don’t believe, he can read my face like a book.


#14

My son does very little with his days right now. He spends a lot of time just laying in bed, or just sitting in a chair. Or he paces. He purchases books, and I think he spends some time reading, tho I never see him reading. He listens to music sometimes.

I’d like so much more for him, but for now, I try to accept that he needs this time. He used to walk all over, but has stopped for now. There are a couple of people interested in spending time with him, helping him be more involved, but he doesn’t want to do anything with them.

I do take him out maybe twice a week, maybe to the bookstore, or a coffee shop or to a restaurant.