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The advice from well meaning people is overwhelming


#41

demon possessed, yep I’ve heard that one. It made me so mad I wanted to spit nails. Also well meaning people saying, “Don’t you think she needs to be seen by a mental health professional?” Duh, already doing that! I’ve always said, we as parents do not have the right to give up on our children. But it’s sad when I see so many who do. Her father included. Stress is stress and we all have it. Probably us more than a lot of others. But we keep trucking on. It’s the only way to live in my opinion. If I were to turn my back on my child, I would be miserable. Keep the faith and keep moving through it. We have already chosen not to go around it, let’s keep being here for each other. We are the few that really understand what it is like and lean on each other for support. Thank God we have found each other.


#42

Thanks for sharing your good story. I am hanging on and believing that all these things are possible for him one day.


#43

Yes, you really don t know how it is unless you have been there. How right you are, I couldn’t turn my back on my child either. This site really helps me and makes me realize how clueless so many are with their dumb and sometimes cruel comments. We have to hang in there, it is worth all of the stress and time and hard work.


#44

There is mention of group homes and independence in some comments. One worry to me as an outside observer is putting simil
arly mentally ill together in
Apartment or house situations is the potential for
manipulation of vulnerable individuals into increasing bad habits like smoking cigarettes pushing some into chain smoking by others who just want company for their own smoking. My belief is despite what the legal situation is smoking by already mentally ill persons should be restricted or even totally banned in the group homes both for health of individuals concerned and other passive smokers…


#45

In my son’s group home experience, he opted for a smoking home, he could have had non smoking but in this case they all smoked and were not allowed to smoke in the house only in the garage where they had chairs and tables and ashtrays and the social worker monitored the cigarettes according to what was recommended by the family which was usually no more one smoke break an hour at most. In between the smoke breaks the cigarettes and lighters were locked up. There was no smoking after lights out until morning. The meds and coffee were also locked up and monitored.


#46

My son stays home and does nothing, also afraid of everything! So far, nobody has said anything nasty or unfeeling to me and nobody better EVER!! Our kids aren’t lazy!! They’re not milking the system or whatever. My son is aware of what he’s missing … like a life! People like that, should have to have a child with schizophrenia!! Then let’s see how they change their attitude! But of course, I really wouldn’t want that to happen. Just makes me really really furious! And sad. Always sad.


#47

The last time I was able to get my son to go to a dentist I was making the arrangements ahead of his visit to pay, sometimes he gets confused and just leaves, this was not our usual dentist, my son refused to go there. Some office manager told me “you should back off mom, son’s a grown up now”

I usually worry about the people my son will come in contact with, the foul names he will whisper at them can be shocking. Her, I didn’t worry so much about.


#48

My responses to medical people who say this kind of thing, and it’s always some office manager or someone making appointments, goes something like this:

  1. Would you like to get paid? If you do, then you really should think twice before you decide you don’t want to deal with me.
  2. Do you have a family member with a severe mental illness? Oh, you don’t? Then you’re not qualified to have an opinion.

The funny thing is I make all of my husband’s appointments, make sure his scripts are filled, and pay his bills - I even go with him to his appointments if I want to know anything because I can’t trust him to listen & relay that information. No one bats an eye at that.

I have the utmost respect for medical professionals, but that doesn’t mean they don’t need to have some respect for our family situation. And, as long as I’m paying the bills - or the insurance I pay for is paying the bills - I don’t tolerate a lot of pushback from the clerical staff for things that really aren’t any of their business.

I did have a couple of therapy places that wouldn’t let me make an appointment for my son even after I explained his diagnosis. I get their point - they want to make sure he’s committed to coming for treatment. But, since they couldn’t get my point that, while he was desperate to talk to someone, his anxiety was too much for him to get on the phone and answer a stranger’s questions, I moved on to the next place. They obviously were not going to be the office for us.

Something’s changed though. For about 5 or 6 years after my son turned 18, I had to deal with that kind of thing. Lately, no one says a word about my involvement.


#49

That woman is a bitch!! And um she has no business telling you about YOUR son, schizophrenia or no schizophrenia! What is wrong with people???


#50

I was caught by surprise, since I usually deal with nurses and doctors who are well aware of the situation -his nephrology team. Caught me on a vulnerable day - often I am “loaded for bear” advocating and solving problems takes a lot of our time and energy as caregivers. I wasn’t that day, and it hurt.

I did not inform this new office of his scz, maybe this was wrong? I knew he would be working to suppress - he was much more capable of suppression in those days.


#51

And he refused to go back for the second part of the intense cleaning. Big failure all the way around.


#52

Today the police were called and they said they don’t believe he is schizophrenic and he is just odd. So then my brother in law talked to him and so now my family says that he dosent have schizophrenia he is just an “assh*le” to me!
(Yes they say, "he does think he is jesus christ but you need to quit pissing him off)
I have no response to that but to distance myself from my family.
I can’t believe how people treat mental illness.
My family is mad at me because I wasn’t able to get him commited today because I said the wrong things.


#53

I’m sorry, we never know what anyone wants to hear in this business.


#54

Is he a danger to himself or others? File an MIW and they have to pick him up and take him in for 72 hour observation. At least that is how it is here.


#55

Advice? I am someone now in a strong recovery from once being / is Schizophrenic. I understand your pain. I understand the secrets you keep. I understand the small steps in the right direction, of secret celebrations within your family. I understand how precious a “birthday” becomes. (suicide was always a terror for my very amazing parents and immediate family). I understand days of complete clarity, moments when the clouds would clear. I would watch my family be so full of gratitude for those rare occasions. HOPE!! that one day those clouds would forever part.

I wish i could give you “advice”, tell you its all going to be “alright” I wish i could say , “Prayer” solves all problems I wish i could say “you” will be given a MIRACLE.

The truth is? Healing is HARD WORK. a FULL TIME JOB (for the family) and the sufferer. Its NOT easy. There is no MAGIC CURE, NO …Magic PILL. No “Magic therapist”., its a hellish rocky road.

But its “worth” the journey to embark upon.

PS. Please don’t give up on Hope!!

Thank You.


#56

Wow, would it be okay with you if I wrote this into my notes to keep it as a reminder for myself and to post for others in the future? My son is unmedicated and your advice sounds like his journey. Thank YOU.


#57

Thank you for this. I feel pretty down all the time for my poor son and I love your words. I would also like to copy this and show other family members.


#58

please…of course you can copy this and make notes. :slight_smile:


#59

Yes!!! You are FREE to copy and paste all my letters. (I make them public so i can help others)

:slight_smile: Hope your son is doing well!!!


#60

The demon possessed thing is probly the worst. I know! Let’s convince our schizophrenic family member that he’s possessed by demons! That’s a GREAT IDEA! Not enough that he’s mentally ill. Now he’s in league with the devil. Why? Because of the rock n roll music. Yup. That’s what did it. Styx is the high road to Satan. Sorry. My brother went through that. This is for him: https://www.youtube.com/watch?v=LsYvuxmzxX4