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Coming to terms


#22

Stevo, does your son do better one on one with people? My son does and I don’t know that he will ever be able to go back to a classroom full of people again.


#23

Go to a NAMI family to family class it’s only 12 weeks but I met some great people and we are still friends 5 years later. They KNOW what you are going through. We no longer spend all our time on our problems we actually have fun. Good luck


#24

Yes my daughter is on court order treatment.We had a very bad experience with her last year.We tried to get the police to bring her in but they could see nothing wrong with her.We knew she was acting very strange she took off from her boyfriend and went into a girlfriend apartment who also has mental disorder.There has been a man living in her apartment taking advantage of her money wise.This guy told my daughter he was Jesus and she believed him and he had sexul relations with her.My daughters boyfriend found out who Katherines case worker was and reported him.When they called Katherine who lived in the apartment they told her they where going to have her evicted she than called the police to come and get my daughter.An Ambulance came for her she was in a catonic state when she arrived at the hospital.She was hospitalized for 5 weeks than sent to a safe bed for another week.He was feeding my daughter her friends Larazapane he also gotAbout one hundred dollars he got . her to take all her money out of the bank and give it to him.When my daughter was well again she went to the police station but there was no help available because she was in psychosis at the time.We had made calls to case worker for help but she was always unavailable to her.Sad but true


#25

That’s sad. Here in the states, an SZ has to have committed a violent crime to be granted ward of the state… At least, that’s what happened to my brother. It’s probably the same in Canada. I think there might be a difference between court-ordered treatment and state guardianship. In state guardianship, the state completely takes over. Legally, the person involved is no longer your son (or daughter), not your brother (or sister). The state becomes the parent. At least, that’s how I understand it. I could be wrong. The state takes over legal guardianship, and none of the family members have any say. Nasty business. But, if the situation is that bad, if she’s completely unable to care for herself, there might be a way to have it done. You’d have to talk to her social worker, maybe hire an attorney, and then appear before a judge. My brother’s case was so severe, the state just automatically stepped in, basically told my parents, “Ok, he’s not your kid anymore.”


#26

Yes, he is currently out and get what’s called home instruction (it doesn’t take place at the home though). He’s in his last few months of high school so I don’t think he’ll go back. I believe he already has the credits he needs to graduate. The classroom does bother him and he says people think he’s a weirdo. It’s tough. He got into the college he wanted but I just don’t see him starting in the fall. We’re still trying to find the right meds, etc.


#27

For me, it took a few years to come to terms. All I thought about night and day is “what’s going to happen next” and constantly monitoring my husbands moods and what he was doing and if what he was doing was making sense. After dealing with it for a few years, I realized I was not living my life…I was constantly on the edge. So I decided that when I went to work, I would not think about it. I would go to my job and do my work with a smile on my face and deal with the BS when I got home. My home life at the time consisted of taking care of 3 ill people on a daily basis and it was very stressful as none of them were cooperative.
You have to take something for yourself. You need to enjoy your other child’s accomplishments and show it and let them know how proud you are of them…it goes a long way. Sometimes us caregivers get so down that its hard to see the light and I feel that that is where you are right now. If you devote your whole life to worry than you are going to miss out on a lot. The way I feel now is that whatever is going to happen is going to happen. I don’t know how old your child is but with my husband, he was not interested in my pleading with him to get help…it just fell on deaf ears. After awhile, I started to give up as he was not going to listen to me. And along with giving up the fighting and convincing him to get help came the peace. To me, this is in Gods hands…I tried everything I could to no avail. Don’t get me wrong, I still advocate for him but I definitely do not argue with him anymore. I hope you find some kind of peace in your life as it is the only way to cope with all of this!


#28

Hello Stevo. I’m so sorry that this illness has crept into your family. It hit us hard too! We are 2 years into it and most days, we accept that this is the situation our son has been dealt. We are fortunate that he responded to medication and functions relatively well. He is graduating with his bachelors in 2 months and is able to drive and work in a family business…for that we are incredibly grateful. I do hope that your son’s condition improves and he is able to pursue some of his goals. We had to seriously adjust our expectations which helped us to be more accepting of the condition. Best wishes!


#29

We have come to terms with our son’s schizophrenia more or less. He is 34 and has always had difficulties. The schizophrenia diagnosis came years ago. Understand this disease is not curable. Never. It is controllable and new advances in this area are happening. As our son has grown up, along the way his antipsychotic medication has had to be changed at least half a dozen times. He will do better for awhile (years) and then regress, and then have to alter his meds. This cycle has repeated a few times. So we have come to grips with the fact that he will never be cured and also that new treatments are always occurring (slowly). He is fairly independent with the help of a support team. His apartment is never very much looked after. He phones every day. I see him once a week and we do laundry or clean or shop or walk our dogs etc and go out for lunch. He survives when my wife and I take holidays for ourselves. So, yeah, you can come to terms with it.


#30

@Ginger Thank you for this. It has really helped me.


#31

So Canada has its own issues w meds and access. I applied for indigent meds through Latuda and I pay &49.00/ month instead of the prohibitive $1200.00.
Many drug companies have charity care if you look on their web site. Often a psychiatrist should be helpful in pointing out resources.
But the med seems to be a big help for my son as he said “ it made the voices go away “. There are still other remaining issues though like motivation , taking care of the environment and sometimes anger outbursts. He lacks self control in the way the adults gain as they wisen up through life’s experiences.

God bless your family !

Terry.


#32

Terry, it is as though my son has no filter.


#33

And I have a first cousin with schizophrenia and there are cousins of my mom’s with schizophrenia. In high school, he was granted the 504, which is to help kids who have disabilities like attention problems. By his senior year it was evident he wouldn’t be able to graduate. He dropped out and got his GED. Still, with everything AND the genetics, nope, didn’t ever think schizophrenia would happen.


#34

If there is a way to come to terms with this, I would like to find it. For 2 years, caring for my daughter has drained me of most joy. It is a chore, I resent that there is no help from anyone that causes a significant change. It is draining financially: I used to rent her room out out for $500 a month (which I needed), plus I pay for her insurance, food, clothing, medicine, etc. Four short, forced hospitalizations ended with release back to me and no insight for her. The mental health check team in our city comes by but beyond someone to talk to, there is no real help. Per the most recent policewoman, our situation is better than a lot of other folks’ in our city.

My daughter resents me and I resent her: for all I give to her, it is still not enough, or not wanted, or not good. She is not violent toward herself or others, she mostly isolates in her room. She gets fired from most jobs (and only gets a job if I can find her one). She talks to her voices 800 times more than she talks to me. I am lonely for her and I live in the same house. My other children avoid me, and her, and contribute nothing. I have lost most of my friends. It would be one thing if there was an end in sight, but knowing this is going on for the rest of my life, or I have to make her homeless seem, to be my only two choices. I wish we both were the people we used to be. This is a downer post, I know. I’m sorry.


#35

oldladyblue, refresh my memory, I am traveling and looking at old threads is difficult right now and I haven’t downloaded the app they recommended a while back.

We were quite overwhelmed by the cost of our son’s care. We brought him home to live because we could not afford his housing, food, medical and clothing bills. We were especially concerned as I have already retired and my husband will soon.

We booked an appointment with a psychiatrist that our local NAMI recommended. He specializes in scz and severe bipolar. At the point, we were even not totally sure our son had scz. It is tricky when they have the insidious form, they change so gradually. The leaders of our Family to Family class were working so hard to get us to see it. We attended FtF to figure out how to live with someone who had severe social anxiety and auditory hallucinations. When his auditory hallucinations showed up 7 years later, (to our knowledge) we thought his auditory hallucinations were caused by other meds he has to take. He never said I am hearing voices - for some reason, we didn’t connect the dots because he always attributed the things he was hearing to people who were nearby.

You just don’t think that your child who has one major illness already, will get ANOTHER MAJOR ILLNESS. C’mon God, an occasional lucky break would be nice.

We laid out our observations for the doctor’s opinion. He was kind and spoke directly. He asked questions and made us see what was right in front of us. We asked him for advice going forward.

He recommended reading everything we could by Dr E Fuller Torrey. He said to get our son officially diagnosed, using bribery if needed. He told us to cut off any funding we were providing to our son and then offer him money for the rest of his guns. We had already purchased one of his guns. Once diagnosed he said to get him on ssdi, ssi, Medicare and Medicaid. My son also graduated successfully with a BA. We paid for that, he took out a student loan for grad school, the doctor said after ssdi and ssi are in place, apply to have his student loans erased if his diagnosis shows permanent disability.

We did nearly everything the doctor said. We cut off his funding, eventually he sold us the rest of his guns. We bribed him to see a psychiatrist for a year and got a diagnosis. Ssi, ssdi, medicaid and medicare followed. The student loan was removed.

The only thing we have not done is achieved forced meds and gotten him stabilized. We have tried to the best of our ability where we live.

He now knows how much social security he gets. He has chosen a place to live and it’s within distance of a community food pantry that allows 6 visits a month.

He knows the rules of ssi and ssdi are that we cannot provide him with food, clothing or shelter - and that includes utility bills.

We can pay for other things, like his phone - but if we were to pay for his medical care he would no longer be eligible for Medicare and Medicaid.

Since she is diagnosed, which of these things do you currently have in place for your daughter so far?


#36

Thank you, Hope, for the above post. It is a long road you have been on. I am fairly new to the caregiver forum, and find the stories I’ve read help me a lot.

I did the NAMI 12 week class, it helped with communication in my home. The NAMI reps told me to Baker Act my daughter over and over (lying if I had to in order to get her hospitalized) until she remained on meds, but after 35 police visits to my home and 4 forced hospitalizations, she has no insight and always stops her meds. She declined a 18 month live in program, an outpatient program, and a day program for schizophrenics that would have helped her get a future job. She lost 4 of 5 jobs I found for her, but she IS working again part time. She turned down applying for disability or social security as she “doesn’t want handouts” and “isn’t ill”, yet she expects me to support her because “I’m her mom”.

I can’t Baker Act her further as she stopped any sort of verbal threats, and takes care of herself, food, hygiene and basics of living matters. I was told at a recent NAMI support group that in my state guardianship doesn’t mean I can force her onto medicines.

She was diagnosed but I have no access to her medical records. Perhaps with guardianship, I could get them and apply for disability for her.

I am reaching a point of acceptance of my current life, even if I don’t like it.


#37

Time to start acceptance is after you get her financial world in order;)

As you mentioned regarding your lifesaving class- you currently have a big weight around your neck weighing you down while you are trying to stay afloat- it’s her expenses.

Guardianship can’t force meds in many states, but it can allow you to apply for ssdi and ssi for her - you apply for ssdi first. You don’t need to see the records, you will sign permission for her doctors, as her guardian, to release the records to Social Security.

Sorry if my post was odd in spots. Still traveling and writing a long post via phone gets a little disorganized.

You have to do what’s best for her and securing her financial future is important as the current financial plan is unsustainable.

She can continue her part time work on ssdi, less so on ssi, but still room for some hours a week.


#38

Ahh, that is great! I saw the records when she came home from the hospital, in her room, but she destroyed them a few months ago.

Is it best to apply for SSDI myself when I get guardianship, or to hire a lawyer?


#39

Many people do hire a lawyer who specializes in disabilty. In many cases, the lawyer’s only payment is a portion of the back disability. It’s been over three years since we applied, I think back disability is paid back to 2 years - but things can change and I can be wrong. I never take offense at corrections from the rest of the forum. Stuff changes and we remember things incorrectly - hey - we live with a lot of stress.

I didn’t use an attorney, my FtF class had several people who had applied successfully without using an attorney. There are people on this site that insist a disability attorney is the way to go. Now you have been told both and will have to choose;)

The teachers at FtF said the mistake many parents make in the applications is that we tend to emphasize what our children are still able to do. Of course we do, that is the list we keep in our heads. You know, well, she can still do this, this and this. And on really good days, she can even do that!

An application for disability isn’t a holiday annual letter.
It is natural for us as parents to want to share the amazing things our kids can still do - because frankly we are amazed if they aren’t locked in their bedroom trying to deal with raging psychosis. One day my son washed a car and rolled the hose up so well I had to take a picture of the beautifully rolled hose. So, one day in 16 years, he was able to wash a car and roll a hose. That is not the day to write about. How can Social Security or anyone else for that matter, help us if we don’t tell the truth about the reality of our kids’ lives?

Instead we were told to write describing their bad days and what they could not do.

After the initial application was processed, SS used to send out themselves for the doctor’s evaluation / there is a process for giving the doctor permission and send you and your child an evaluation regarding day to day tasks for both of you to fill out.

Getting my son to respond on that one was easier than I had thought I told him they want to know these things to know what kind of medical care you need. I asked him the questions and wrote down his answers word for word. I did use symbols rather than writing out the expletives he used when asked if he could shower himself.


#40

This is great advice


#41

They told us to paint the picture. Lots of good info at Family to Family, we had a great teacher with a lot of experience.