Family and Caregiver Schizophrenia Discussion Forum

My life changed after my son's illness


#1

Hello all, This is a great place to vent. I have been trying to participate more actively in this forum as there is so much information in many categories. The administrator and others in charge are doing a great job. My life style has changed ever since my son was diagnosed over 4 years ago. For the first 2 years he lived alone so I worked which kept me busy. We went on trips and had a very good social life. We went to dinners, pot lucks and other gatherings. We flew outside USA for sight seeing with tour groups. Now my world is smaller. Our son has been living with us for the last 29 months. He has addiction issues. We can’t leave him and go out, neither can We take him. If We take him on trips he still wants to drink because vacation according to him is for partying. So spending all that money on group tours isn’t worth it when you are anxious all the time. I pretty much don’t leave him alone in our house. He goes to college and I hope he can find a part time job. He worked for a year and recently quit his part time job. He was very out going and had lots of friends before he got sick but now he has very few friends. How do you manage with your loved one who is living with you OR living close to you? OR far away? Suggestions, advice and comments please. Thanks.


#2

Why is it that you can’t leave him alone in your house? Is it unsafe? Do you have alcohol there?


#3

He could drive and get drunk. OR might have friends over who are losers. He might ask someone to bring drugs to our house. We have limited beer for him each week with Psychiatrist aware. He is not on medication right now. I go out in the mornings when he is a sleep . I left my well paying job to be with him. He is doing well in college.


#4

@Skims, we don’t have alcohol in our house. Thanks. Right now what We are doing is working for us.


#5

Yes life does change… Two years ago I was just starting my research into schizophrenia. Now at least 75% of my life is mental health in one way or another. Maybe 90% is more accurate :wink:. Even grocery shopping ended up being about the best foods while balancing nutrition and what will get eaten. I can’t say that I mind. For the most part I’m happy to be a part of it.

It’s not easy keeping our loved ones stable and off of street drugs or alcohol. It was a personal choice that benefited both my husband and I to make our home drug and alcohol free. I can’t stop my son from using or drinking. He only had to walk across the hall to get access. Really it was a given that he would try to bring it in and he did. It was also a given that I would find it and throw it away and I did. Lots of times I questioned leaving my son home alone… I did it anyways. Figured I would deal with the consequences when/if I had to. I needed my own space and time away.


#6

@BarbieBF, I agree with you. Also what works for one , may not work for the other. We have to make working choices . I am never bored being home, I have plenty of things to do. I have to say for the last 29 months We have tried very hard to see that our son is able to live under our roof with rules and for the most part I have to say things are working for us. I am married for many years and We both work together for one goal. Now that my son is not on medication I have anxiety much more but I can’t control my son. I am trying my best to accept what ever comes my way. Good luck to all of us.


#7

Yes-my life changed in ways I could never imagine…
I still had to keep working. I was divorced, plus I have 2 younger daughters.
I tried that situation for awhile, but could not tolerate the drugs, strange people in my house, or C. not staying on medication. He went through a tough process also.
At this point, he is 37 and living on his own. I worry about him isolating-heck I worry all the time. I am still in the process of taking my life back and giving time to my other kids who had a mom whos only preoccupation was her sons illness.
I am really tired of it by now. Trying to focus on getting C. as independent as possible. It would be great to have his sisters and dad more involved.
At some point I guess we all have to let go a little while still being supportive and setting boundaries. Not easy-but can be done!


#8

@bridgecomet , That must be hard. Working , single Mom and 2 other kids. I am fortunate that my husband is able to provide for us. My son is in college so We want to support him right now till he is done. With me being home I am involved in things that he does and able to support him. We do family therapy, individual therapy and other things together. For the most part things are working for us. Like everyone else We have good days and bad days. Once he finishes college he is going to move to a bigger city that he had lived before he moved with us which is his dream. I am sure everyone does things based resources. Wishing you the best for your entire family.


#9

We live one day at a time and sometimes it’s hour by hour or minute by minute. Everything is unpredictable. My daughter has struggled with drugs and alcohol and as some of you know has recently been arrested. I am a single Mom and her Dad is an alcoholic and does not lead by example and only cares about himself. I don’t have alcohol in the house as alcoholism runs in our family. I wish God would put a horrible taste in her mouth when she drinks. Same with drugs. I wish she would hate them and see that they make her condition worse. We used to love to go to church and she would go but not anymore. As far as friends go, we don’t really have any. Girls can to be catty/clicky/gossipy and growing up and even now she (as well as I) have always struggled with making female friends. I would love for her to go to NAMI peer to peer group and meet others like her so she has somebody to talk to. She held a decent part-time job this year making very good money while getting the monthly injections. Now she chooses to not get the injections and is on Seroquel but it is hit or miss with her doses.


#10

Its a tough road! Im still hoping to get my son on this site. He doesnt like to listen to me. Thats why I never post my name—just in case;)
I`m pretty convinced if he talked to some people here-there would be a big change in him.
One day at a time is right!


#11

I’m going to say some things that will make everyone uncomfortable judging by the conversation so far, but I hope they will help in the long haul.

Your life didn’t change for the worse after your son’s illness. He’s always had the illness. It’s genetic so it’s always been there. What he’s got now is a diagnosis. But his diagnosis makes it possible for him to get better.

What’s really stopping him from getting better is his addiction problems. I’ve been reading these boards for six months now, and I am honestly having an easier time than other parents, simply because my son neither drinks nor takes drugs. He engaged with his treatment very quickly once he got a diagnosis, both APs and CBT, and he is sticking with it. Our lives have improved immeasurably.

So I believe that your major problem is probably not the illness, it’s his addiction. If you take away the illness, but he’s still got the addiction, you’re still in trouble. If you take away the addiction but he’s still got the illness, its manageable.

Now the problem is that addiction is not just a personal problem, it’s socio-cultural. If he’s surrounded by other people taking narcotics, how can he see any need or possibility to give them up himself?

I support my son by not smoking, using or drinking myself. And he has a lot of friends who don’t use, but that seems difficult to pull off in most countries. For most people AA is an option in the US, I believe.

Maybe, we should start setting up old-style “Temperance societies” again! I think the problem for young people is that giving up narcotics is like killing off their social life.


#12

@Hatty , thanks for your reply. We don’t have history of mental illness in both sides of our family. Also a lot of people have dual diagnosis , self medication which makes them feel better. I am glad your son is doing well. Good luck and sending you positive thoughts.


#13

We didn’t think we had a history of mental illness either. But, now we think it may have been hidden by previous generations (also in previous generations where I come from, people drank but getting out of your head was unheard of and a social disgrace, and nobody took narcotics).

Plus, we have history of diabetes, and it seems the two are very very directly related.

Do you think that your son has sz without any genetic damage? If so, is it purely induced by his drug use? In that case, working on the drug use would be key, surely? “Self-medication” is one of the most damaging euphemisms I have ever encountered as well. More honest to call it “self-obliteration”, I think. I mean, that’s what people are doing: they are suffering so much that they want to “get out of their head” so they can forget their psychic pain. But it makes things ten times worse.

If you read the boards here, you quickly see that all those with sz who are managing say the same two things: take the meds, stay off the drugs.The repeated relapses and hospitalizations are all in people with addictions or who don’t take APs. That’s their choice, but personally I wouldn’t support that choice.


#14

@Hatty
The exact causes of schizophrenia are unknown, but research suggests that a combination of physical, genetic, psychological and environmental factors can make people more likely to develop the condition.

Current thinking is that some people may be prone to schizophrenia, and a stressful or emotional life event might trigger a psychotic episode.


#15

No, sorry, but the exact causes of any particular case of schizophrenia are unknown, but overall there is a massive mount of scientific knowledge about the genetic aspects of schizophrenia, even down to what specific bits of damage on which specific genes. Scientists are involved right now in a very rapid process of developing tests for it.

The complicating thing is that it may involve hundreds of different genes, which does mean that all “schizophrenia” is not the same. But the old “Freudian” idea that some kind of emotional trauma causes it, is fading fast. You might find a psychologist (not a doctor) who believes that, but not many psychiatrists (who are doctors).

Certainly, environmental factors play a part, but it is more likely to be a disease trigger in the environment than some emotional shock that sets off a process to which the person is already genetically disposed.I believe that people with sz may suffer more consequences from trauma because they have less resistance to stress, but that lowered resistance to stress is genetic in origin.

On the front page of this website not long ago, they announced that ALL the scientists who work on this project who have schizophrenia in their family are giving their children fish oil daily. If they believe it is caused by emotional trauma, why haven’t they ALL got their children in preventive therapy instead of simple fish oil tablets? They clearly believe there is a physical cause, not a mental one.

The fact that there is no previous history in someone’s family doesn’t mean that new genetic damage has not arisen in the person with sz. After all, in everyone’s family, it has to start somewhere.

One of the scientific papers I read suggested that it (like autism) may be caused by viral infection in the mother while pregnant. They gave several examples of other illnesses which apparently occur long after the initial “insult” and they said that it may be possible to find out what the particular virus is and vaccinate women against it. Wouldn’t that be wonderful?

It is also possible that drugs are the “environmental” factor that cause it to arise, but again, I am not convinced of that. I think that’s one way of society making people with sz “responsible for their own illness”, which means no sympathy for them, they and their families will have to look after themselves. It’s a very dangerous argument. So is the trauma argument. That’s far too similar to the old Freudian “schizophrenogenic” mother argument, which is also rejected by scientists now but not by psychologists who make a fortune out of it).

I remember in the UK in the 1980s, when black parents’ groups asked why more black boys were being diagnosed with sz than white ones. It was suggested that they were being somehow oppressed by psychiatry, sort of “binned” by society (the last part might have been true). The response was that black boys were more likely to smoke cannabis and therefore more likely to develop psychosis (i.e… it was “their own fault”) and there was a lack of care, etc for their needs.

But there could have been another answer. Most of the young black people in the UK at that time were of Afro-Caribbean origin, and Afro-Caribbean people also have a very high rate of diabetes. Gestational diabetes and Type 1 or Type 2 diabetes in pregnancy are very closely correlated to schizophrenia in the mother’s offspring.

The mind and the body are not separate. It is perfectly feasible to have a physical (genetic) illness with behavioural effects. Why is it that people have sympathy with people with childhood (inherited) diabetes, but not a mental illness? Why, if someone has a mental illness, is it necessary to find a person to blame (the “trauma-giver”)?

When my son was diagnosed, that was what I told him. “You have a physical illness with behavioural and mental symptoms. It’s not your fault. But you need to control it, or it will control you. Nobody tells me to stop taking my insulin. Don’t listen to anyone who tells you to stop taking your medication. Stay in communication with your doctor, take care of yourself and you will get better and live well.”

Any other type of approach is stigmatising in my opinion, and that’s why people won’t accept they have it. they don’t want to be “victims of trauma”, they don’t want to be “mentally ill”. So say it that way “physically ill with behavioural symptoms”. It works much better and makes people feel less helpless.

And I don’t only know my son with this. I have a close friend with sz - also with a diabetic mother - who also got better in months once she started thinking that way. And a friend with BPD who is in denial and whose life is chaos.


#16

Life is difficult. My son also is an addict despite the fact that I mortgaged my house to send him to a dual diagnosis rehab. He chucked at the door and just became more psychotic. For the past two years, I was able to get a court order. He was given injectable Haldol and urine tested. I remembered what it was like before he became ill. He worked, got an apt which I helped him pay and smiled.
The court order is over just 1 month. He is without meds and refuses to negotiate for health. And so I am trying my best to surrender. Not easy but I realize that no matter what I do I cannot save him from drinking or getting arrested. I try to live in the second.
Linda


#17

@gyplin , Hope as he matures he will make choices that will work for everyone. For the most part things are good since I stopped working. I don’t think I can work and expect him to make choices that will be best for everyone. My job is to take care of him while my husband works. My husband is a physician in private practice so he sometimes has long working hours. So this arrangement is working for us. Have you taken family to family classes? I have taken them twice , also peer to peer classes for your son. My son has taken them too, plus first aid classes for mental illness which were offered in our area. We all took the classes. We also do family therapy, individual therapy and he sees Psychiatrist every month. He lets me talk to his psychiatrist too. I go to several support groups in my area which is a plus. Hang is there.Good luck to you, Hope things get better.


#18

@Hatty , Thanks for the useful information.


#19

hi lenorna this group may be of interest to you its is AL ANON for family of drug addicts and alcoholics.


#20

@dandydinmot ,I go to these meetings. Thanks.