Family and Caregiver Schizophrenia Discussion Forum

Where are the families?


#1

I know all the caregivers are so busy with chasing down help for their loved ones. There doesnt seem to be a lot of discussion on the family site. I am getting in trouble emotionally over my son. You would think I would be over this by now-but Im not.
I am going to try to find a support group here that meets up in the mornings, or on Saturdays. Possibly going to get in to see a therapist too.
My life is hijacked whenever I think something is up with my son. I really dont want anymore trauma for either of us. He will not take medication, or have anything to do with anything that has to do with his illness. He has some pretty bad odc habits now--something he didnt have before. I dont know why its so bad with him now.
Hes holding his own-as best he can I guess--but it is so hard to watch this and not be able to do anything about it. He doesnt even want to talk about it.
I cant seem to detach at all---only when he is doing well. I feel like he suffers greatly, yet he is choosing this way. I try to tell him that his life would be so much easier if he would get on a small dose of Zyprexa ( This is the one med that helped him in the past ). I am trying to let him know that he doesnt have to worry about me “turning him in” and that this is his choice.
I really cant live with his choice if he is suffering. Just kind of talking......20 year battle and hes 38 years old.
Thanks for listening-or reading.**


#2

I have read non-fictional books by authors who depict raw (using a nice word here) challenges, one after another, that they suffered through. Too much suffering is my one-sentence summary of all their works. Dictionaries are full of outstanding words to describe these authors whom I respect.

I respect you.

And I hope there is something life-changing coming around the bend to lift you and your family up. I hope some type of individual(s) have the know-how, dedication, commitment and abilities to be accepted by you and your son, whereby your son will relate to them because he sees how they experience their environments. I wish they would be in the path of you or your son.

I am often quiet around the elderly or folks with autism who appear shaky. I do small things that let them know I am there for them. And this is one way they have accepted me. Other tactics for other things.


#3

he is lucky to have such a caring mother as yourself,

i am 32 and my mum is severely restricted and my father died so i guess i am kind of on my own now, all i have is my sister and she is busy most of the time so i had to get pro-active luckily i was given a really good med that has helped so much,

i just wish i could bottle it and give it to you but i know how difficult it is to find the right drug,

take care


#4

I’m so sorry you are going through this. I feel myself going through that alot, but when he is doing good I fall apart. Like you, I have considered therapy. It may be the answer…Is there anyone that can help you some? Hang in there, deep breathes, you got this!


#5

You are a heroine to me? To go what you go through daily. 20 years. My God. How have you done it ??? Isn’t there some way to maybe take him in and get a shot? If you get him taking shots maybe it would work? I’m not much help.


#6

What you said is a lot of help.


#7

I wrote the same thing last night in my journal.
Thank you @nykia…you always sound so poetic and beautiful.
@daydreamer…thank you for your words. I just want him to have a conversation about it!

Thanks @AmyW! No one to help really. I have been in therapy off and on, but it`s been a long time and I know I need some “on the ground” support-and somehow not let this rule my life anymore.

You are a great friend Micheal!
I dont want to force the issue with him anymore--he has always been forced-and when the enforcement is over, he stops taking his meds. This has to be his decision now. Maybe at some point i will have to-but as long as he is making sense, Im waiting it out. He was on prolixin injections off and on for years. Always fighting not to take the meds.
I do not want the police knocking on his door to take him to the hospital, that has always been the way with us.
We have had enough trauma. However, it`s time for me to get some help.
Thank you


#8

Wanted to add something about those other tactics. Sometimes the elderly and others can become mentally, verbally or physically aggressive towards caregivers. The tactics I have used to prevent these types of behaviors often failed. I usually step in as a human bodyguard so that the aggressor does not hurt himself/herself or others when physical. But went mental and verbal aggression surface, It Is Very Hard to steer back all involved–unless there is another who is good at diffusing issues. Not to take it personal is professional. But the goal at heart is to be effective at offering companionship.


#9

**Sometimes my son does get verbally abusive. When he does, I will leave, hang up, tell him to get out of the car,etc…he is actually getting a little better with this.
Its very hard to be around him for long. I am wishing for a tactic that will make him see that he doesnt have to live this way :see_no_evil:
Both of us have lived through enough. We are both pretty battleworn. **


#10

Hi Bridgecomet,

Big hugs. I am in the same boat as you. My son also is refusing to take meds as you know from my last post, My son came by today because he wanted to see his sister. She wasn’t home, I promised the family I would stay clear until he gets under a doctors care, I turned him away. It really stinks.
I know how you feel we never wanted this for our kids, all of the things to help them grow up and have a good life.
I don’t know too much about you as I am new on the forum. Have you taken NAMI family to family? They have all of the best answers available. One thing they say in the class is never,ever feel guilty no matter what, you are doing the best that you can.

I know I have been super co-dependent with my son. It is our nature as moms to want to care for our kids, Do you have any other family members that can take over for you? So that you can get a break form the worry?
The fact is, is that the way the MH system works now our kids have the right not to take medication.
I wish that I could just keep my son in a safe place where he could be cared for,

I can just tell you what i am doing, I choose to believe that my son is making a choice to be off meds. I understand his choice. I’m not sure what choice I would make put in his position.
However, my son right now is being a little scary, so I’m staying away. Keeping really busy, praying a lot. and reading on this forum. It works, kind of… sometimes I cry, But I have hope that things will turn around at some point.
Give yourself permission to enjoy your life, I know you son would want you to. So do I, you are a great and caring person, how blessed your son is to have you!
pm me any time I check my email every hour. During the day.

I hope you are feeling better by the time you get this post.

tea42


#11

Yes,it has been quiet in the family section lately!I pray that you will find some peace.I am just starting out on what I know will be a long journey with my son.My stress has been so severe that I started having ocd issues+started meds(that helped very quickly).Take help wherever you can find it.I’ve been going down to the lake every few days to try to relax+watch the birds.Hang in there!


#12

My brother has schizoaffective disorder since teenager; he is now 56. I sympathize with you as it has destroyed my family for years. He lacks insight so medicine adherence is a challenge. Can you get your son to possibly take a monthly shot? That helps. Although in my brothers case he also needs to take mood stabilizer pills.

Our other huge challenge is finding appropriate housing as elderly parents can’t handle anymore.

I am replying only to tell you that you are not alone. This is a family disease. Take care of yourself too.


#13

**Thank you all so much! Its good to have support here! I am going to a therapist again. I have before. Whenever I start to feel like Im just whining-I stop going.
My sisters-though faraway-have my back.
This is a disease of the family. Dad only sees the situation in black and white. One of my daughters is angry, the other one scared.
@Tea42 I may take you up on that PM! Thank you!!
I sometimes wonder why we don`t converse on here as much as the other sections?
**


#14

Hi… I am somewhat new on here and not all that familiar with navigating the site… but I am a good listener and have a similar situation,… As moms, we will forever be in trouble emotionally over our kids no matter their age and I am guessing that we will never be over this thing called mental illness… My son is 28 and was told that he is delusional. This only came to my attention about 2 years ago as he slipped away into a dark place of strange beliefs, accusing people of things that never happened …you probably know what I am talking about…Anyway he saw a therapist and psychiatrist for only 2 months of which the meds made him sooo tired that he stopped…This past month he began dwelling on and accusing a neighbor of “things” … etc etc…I got a phone call from her tenant that he has also been trespassing on their property… harassing phone calls although they wanted to discuss it with me first before getting police involved… WELL… after getting nowhere for a yaer and a half of experts telling me that there was nothing I could do… i was referred to the Crisis Intervention Team who came by yesterday… spoke to him for a few minutes and then called me to advise they had to call police and have him brought to the Psych ER…This has been the hardest thhing I have ever had to deal with and am very emotional too as I write this but just need to keep typing here…He went willingly… I was surprised by that … They did “Admit” him so he will not be coming home and I know this is the beginning of many ups and downs…he also has a severe marijuana addiction so he will be as far as I know placed in a dual diagnosis facility…Although I am very emotional… me and my family are also excited that he may finally be mandated to treatment and medication… I keep forgetting that the hospital cannot speak to me but as his mother… i still see the little boy that I was responsible for his health and well-being… have to keep reminding myself of the HIPPA laws… anyway… somehow, someway we will all get through this… this site has helped me not feel so alone and I too see a therapist… thinking of some relaxation things to do for me also yoga? kickboxing… to kick the living S*it out of mental illness maybe…


#15

Wow, your story could be mine! Two things, hopefully they will be able to treat him and he will begin to have some insight. My son has finally reached that point after 10 months of the correct meds. (He refuses to go to therapy). Also, they can talk to you about what has been going on with him. My son’s treatment team has always been good about that part and I am thankful for that. He couldn’t always be clear about what had been really happening, so it helps to have some input from someone else.
My son is dual diagnosis also. But the marijuana just made things worse for him. I think he finally realized it, so now it’s alcohol. Sigh He says it’s so he can sleep, so I have been trying to get him to talk with his doc about that. It goes slowly, and sometimes backwards, but hang in there. It will get better over time!


#16

ant930

I am so relieved that you have your son treated with a dual diagnosis team. I wished that would occur six years ago. Our patience was tested over and over. With two very difficult hospitalizations – committed – our son came to realize that his marijuana use and alcohol addiction were unable to occur in the hospital and he would leave each time eager to use again. The second one finally resulted in not using marijuana anymore since it landed him there most likely. The dual issues were the hardest thing we ever had to deal with. I tried to create sobriety dates over and over, but as I’ve learned in Al-Anon, thankfully, he had to be the one to stop. Eventually on his own and without AA, surprisingly he quit the binge drinking as well, to the best of our knowledge. Now we can more easily deal with the sz. as he takes his meds but has isolated more, not working, unfortunately. He did work when drinking heavily due to unhappiness as his excuse, according to him.
Keep learning patience with each step of the way. We hear few words from him but the anger is so much less and less stressful for us now. Wish meds would improve more. Best of luck with everything and docs. Partner.


#17

I’m sure our son said the alcohol was for sleep, too. He had issues with trouble sleeping. Sleep meds were not the good answer for our son; everyone is different, however.
Hopefully with time your son will learn. In the meantime if you have an Al-Anon group, I still attend and have such great support there it’s like a lifeline. Don’t we all need that?
Our son also won’t have therapy. I’ve pushed for cognitive therapy for years with no result or answer from the hospital clinic. I must partner with them to the best of my ability and you are correct, that we must speak to the docs to give the correct and clear information. I have beat my head against the wall so many times when they do not believe me but believe him. After all, alcoholism is a liar’s disease (or sz? unsure after this time now).
Hope all the families can receive the care they need, as well as the patient. Take care of yourself, too, so that you can help. You will come to a better place, too. I just know it, but the slow speed can be extremely aggravating.


#18

It is really hard to sit back and wait for the other shoe to drop to your get your son help. I’m sorry that you have been going through this for 20 years but it is great that your standing by your son doing the best you can! That is all we can really do is be there for our loved ones. keep them safe and getting them help when they need it…I have been going through this for 5 years and my son usually only stays on meds for month after he gets out of hospital or long term care. My son was in long term care since last may and he begged me for 8 months straight to let him out of long term care and was the hardest 8 months to leave him in long term care because he begged me almost everyday. I took him out 2 days before Christmas and so far he has stayed on his meds . It has been a struggle because he has been in and out of hospitals or long term care these last 5 years. I’m just waiting for the day that he says he will stop his meds and then the cycle starts all over again. HOPEFULLY NOT SOON …Well just hang in there and were all here for you!


#19

I had forgotten about Al-Anon, so thank you for that reminder! Things aren’t so tumultuous for us now, praying it keeps going with just small hiccups! I am so grateful for this site, it’s nice to know that others do as I do. Best of luck to everyone, keep the faith!


#20

I am sorry and I uderstand what you have been though. At this point, she I trust might be possible for your son to accept help, there is something important you can do. The hospital cannot speak to you but you can speak to the hospital. When my son first came into contact with the mental health services in the UK, I called and spoke to them, and I went (with him) to see his psychiatrist. She spoke to him first and then to me with him. Later when he had a couple of crises, I was able to call and speak to them because they knew my face, my relationship with him, etc. I always prefaced everything with, “I know you can’t tell me anything because of patient confidentiality, so I am not going to ask you anything, I am just going to tell you a few things that have happened (lately/in the past) or that I have observed.” Don’t expect them to reply to what you say, though. If you behave like that, this gives them more information and allows them to “ask the right questions”. Don’t forget that in psychosis people can be confused, they can lack memories, etc. This has done no harm at all to my son. He has never had to be hospitalized/sectioned, and is on a very low dose of anti-psychotics. When he didn’t get on with the first one (Risperdal - it really coshed him, even at a low dose), they changed at his request and he is on a much better one now and is happier. Basically, you can establish a cooperative relationship with the medical team. And that in itself is a “model” for him. My son has since given his permission for me to know about his treatment, but so far I have never asked anyone except him about it. It isn’t necessary.

People with schizophrenia recover with medication AND family and social support. If the medics seem uninterested in what you have to say, then repeat that, “I know that people with…, etc.” As long as parents don’t threaten the patient’s recovery/autonomy/confidentiality, medics can cooperate with them.