Family and Caregiver Schizophrenia Discussion Forum

At a total loss how to help our son


#1

Our son is 28 and has sz and ptsd. He is not wanting to go to any therapy and his nurse practitioner said it is vital for him to go and work through things with a trained therapist. He refuses to go. His meds don’t seem to me to be just the right dose as he still suffers from smell hallucinations, his auditory and visual hallucinations appear to be under control, but he will not say anything to her about still smelling things that aren’t there. We live in a small western town without any support groups. He has not returned to work and is on short term disability but I fear that will run out sooner than we will be ready for. He hates to be around people and just hides in the house and sleeps and plays video games. We as parents of a 28 year old, are a little older and we try to tell him that he needs to work things out so he can get some kind of a job, because we won’t be around forever and he will need to be able to take care of himself. We are at a total loss and would appreciate any advice you have to offer.


#2

To be honest, and as a sufferer of schizophrenia, going back to work can be too much for some people. I am not able to work and I have residual symptoms. Medication is a treatment, not a cure.

Some people with schizophrenia cannot lead independent lives, and I think you are letting your wishes from him impede what might be a harsh truth. This harsh truth: your son has a serious brain disease and it might not be his fault if he can’t work and prefers to stay indoors and play videogames.

You might be expecting too much. If the majority of his symptoms are helped by medication, then that is a huge win. Also therapy is very helpful. You might have to think of interesting ways to convince him that therapy will help him. Personally, I find therapy to be hugely beneficial.

If his medication is not doing a good job he might need a dose increase or a new medication. Can you talk to his psychiatrist about this?

Perhaps, and I mean this in the nicest possible way, you can look at his needs as a sufferer of schizophrenia before your desires for his life.

I hope this helps in some way and that you don’t take it badly.

Others may have different views.


#3

Thanks for your advice, I appreciate it. He has been suffering with it for 7 years and never said anything and was just diagnosed last Aug. and so we really don’t know what we are doing. Thanks again.


#4

I agree with the person who replied first, as a sufferer too! If you are concerned about his life, try to get hem to get disability.


#5

**Hi @crayon
Your son may not be able to work again. You may not be able to force him into therapy until he is ready.
He may always have symptoms-even on medication, but it is important to get the right medications.
I would get on the ball now and try to get him signed up with SSI/SSDI and Medicare. It wouldn`t hurt to get started now as these things can take a few months to kick in.
My son has been able to get jobs, but unable to sustain them for very long. He is 38.
I hope there are social services in your area. Give them a call and see what they have to offer. They should be able to help with applying for these things–even a food card possibly. **


#6

Also trying to convince him that he suffers from a severe illness like this hurts a lot and most of the times the person can’t accept it! When my mother told me to go to the doctor, I thought it was for depression and I accepted to go! Else I wouldn’t accept it.


#7

Maybe see if he’ll spend some time on a site like this one and he could relate to others then accept, treat, and hopefully move forward with a productive life.

I didn’t make any progress until I saw there are people like me.


#8

When I lived in a small town in Connecticut, the town had a social worker. She’s potentially a resource for you.

Ortherwise, go to the White Pages of the phone book, and look up the National Alliance for the Mentally Ill, which might be listed under NAMI. Phone them up, I advise.

J.


#9

Thanks to all of you for your advice. It helps to hear from people who know more about this than we do.


#10

Take him back to the doctors to get the right dosage and if he needs new medication. Have the doctor mention h o w important it is for him to get therapy to live his life. Make sure he is comfortable about who takes him to therapy. Find someone you trust to start helping out , maybe a friend or relative can be his trusted caregiver and take him to therapy. You might need more then one person, but start looking for someone to visit him maybe once a week for an hour, taking him to his appointments and determine if this will be the right person. He needs to eat healthy and exercise so find a person that will help him with a better life. Start writing a journal and transfer to legal papers later on.
He might need legal advice. You can write a journal of people that might be possibilities, interview them, do a background check. Let them know there responsibilities, and if there are duties, and pay involved. Have a written meal plan, exercise plan, doctor appointments and any household management. Legal advice is encouraged and have the caregiver take a class on how to care for schizophrenia


#11

Whoever is a caregiver for schizophrenia I strongly recommend classes from Nami.org and read books about the illness


#12

You can also check your city and county caregivers and mental illness to see if you can get help. A little research is helpful.


#13

Im a 38 yr old schizophrenic and live with my parents. I actually feel it is the support of my parents that has helped mecope with this illness. If I didn’t have my parents Id say Id be doing a lot worse.


#14

We are just starting to think about and look into legal matters. We are in the process of redoing our wills as we did them when our children were very young and now they are adults. I am going to check into having his portion of what ever is in the estate put into a Special Needs Trust. Thank-you fir the tips. We will check into these things also.


#15

Karl, I really appreciate your comment. It helps so much to hear from you. My son lives with us and hopefully we can help him out like your parents do. Hopefully we won’t make too many mistakes that will make it harder for him. It seems like everything is trial and error.


#16

http://www.minddisorders.com/Ob-Ps/Person-centered-therapy.html

That your family helps your son, speaks well of you.

You stated you live in a small western town without any available groups that you are aware of and that your son currently will not go to therapy.

There is the option of family therapy to consider. Distance might be a factor. This option can cover the ground for congruence, unconditional positive regard and empathy, as stated in the link. Until your son has the support of a therapist and group, the option of family therapy might work.


#17

I lived with my parents until I was 32 years old. I had gradually taken over the running of the household, and when I left home, I had a lot of useful skills. Honestly, if you invite me over to your house now, I want to vacuum the floors and take out the garbage!

Jayster


#18

Yeah, the support of my family was vital to my recovery; they wouldn’t let me give up. I got diagnosed in 1980 with paranoid schizophrenia. I was 19. When I was hospitalized for 8 months my parents visited me every day. Today, I live by myself in a nice studio apartment. In three weeks my sister will be going on vacation for 10 days and as a favor i am going to drive over to her house every day she’s gone and feed her cat and water her plants. I do this occasionally and I am happy to do it. It’s my way of giving back to someone who has always been there for me. In a week my other sister is going out of town for a few days and I will be keeping her dog here as a favor. It means feeding and walking her. I do this occasionally too. It feels good to help out. Who knows? Your son might help you in some small way some day.


#19

I am so very thankful for each of you. It has helped me so much to understand a little more about my son. I want to thank those who are suffering with this awful illness for being open. You have helped me to realize that I have not been realistic about what is going on with our son. I have be expecting way too much and will try to be more aware and realistic. You are all a lifeline for our family. Thank-you so much.


#20

My pleasure Crayon.

I think because Schizophrenia is so stigmatized still, it is hard to know what is normal because nobody talks about it. Places such as NAMI and here can really help, also the book Surviving Schizophrenia by E. Fuller Torrey helped me and my parents a lot.

Your son sounds lucky to have such open and supportive parents.