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Sometimes I wish


#1

When my teenage son was diagnosed with schizoaffective disorder last April, I was still holding out hope, naively, that this would somehow go away on its own, that I would wake up and all symptoms would be gone. We have good days and in those moments my hearts hopes so desperately the moments will stay. But I always have a feeling that soon the other shoe will drop. Living in this cycle of hope and disappointment has crushed me; that I too live in a cycle of strength then out of know where I am lost and drowning. There really is no end-game, is there? This is my life now and if I am lucky, it will be a very long battle with my child because he is holding on and fighting for a life worth living. I will attend Harvard in the fall for a year of intensive research courses on mental illness/psychology then start my Ph.D. program in Clinical Psychology the following fall. I am 40 and I cannot effectively say I have the strength to do this; but for my son and for the care givers like us, I have to try. This is my life now and it has consumed me, my only hope is channeling that to help my son and others any way I can.
May I ask, is there anyone here that has a success story to share? A child or loved one living a decent life after diagnosis?

Jax


#2

If there is a success story I too would like to hear it. My son was diagnosed in 2009 and it is an everyday struggle. This site is what keeps me going. He spends the whole day asking for money and does nothing all day. His room looks like a tornado hit it. I don’t know when he last showered. I pray everyday for God to give me strength. It is not easy. I have no life. I hope that I am dreaming everyday…stay strong every one.


#3

I am so sorry that you are going through this with your son! There was a time with my son that I honestly felt like completely giving up, that we would be better off if I drove us both off of a cliff, I was that full of despair. Watching your child live in a nightmare, then because of that, you are living in a nightmare, is so difficult to deal with. For close to two years we lived like this, him screaming day and night, when not screaming he was ranting about radio signals, telepathy and a satellite with people watching his every move. Cutting himself, his legs, arms and multiple times, his neck. He literally ripped or cut my house apart. When I told the nurse at the hospital, on his 7th stay, that I wished for both of us to not be here anymore, they decided to really take action. They put him on a drug called clozapine and for him it saved his life. Fast forward to almost two years later and my son no longer hurts himself, no longer rants and raves, and has a sense of humour again. Not a cure, that’s for sure. He writes notes constantly directed at the satellite people. He once in a while, when stressed will have conversations with someone…and his room is disgusting. No ambition to do much of anything than play video games and go to the gym. I don’t know if this helps you but I felt the need to reach out to you. We all on this forum get how you are feeling. With time and treatment there is improvement, and for some lucky ones, they will completely get their sons or daughters back. Most of us though, live with the “new normal” and try to make peace with that. Take care of yourself.


#4

Hi Jax. When we gave birth to our beautiful and healthy children, we just had no way of knowing this monster was lurking.

Our talented, intelligent, brave, athletic, and hardworking almost 22 year old son was hit with this beast in his freshman year in college. It’s all gone now.

We’ll survive this heartbreak. We don’t have a choice.

You’re not alone.

Good luck with your studies. I couldn’t pull off something like that at this point in my life, but I give you credit.


#5

Hi Jax,
I too wish I had a more uplifting reply for you. My granddaughter was diagnosed 18 months ago at 21. There had been signs since her freshman year in college but, as with most kids, it took a while for the true diagnosis to be made. She is better now. We are lucky to be near a university medical center with a first episode schizophrenia clinic, which has been a blessing. She has a great psychologist and psychiatrists who know all about this disease. We are in good hands and I consider us very lucky. Still, she has serious ups and downs. The Risperdal which initially worked really well, no longer works as well. She has schizoaffective disorder so we are also battling the depression and severe anxiety. They recently switched her antidepressant and there has been improvement. It is a daily struggle. Some days are good, some days are bad and I feel so depressed. This is a good place to share and realize that you are not alone in this. Stay strong!


#6

Success is relative. Love for our children is not. The love I have for my son is what bonds me to him, powered me through the times he almost failed high school, gave me the strength during 2 DUI’s he had, sustained me during the 3 hospitalizations and 3 different medications.
He is the most loving, caring and creative people I know. He is 28, med compliant on 4.5 mg. Invega and takes the pills with no supervision. I have guardianship and conservatiship (sp) of him.


#7

Hi Roseo,
My son does very similar things…cant seem to keep his room clean but wants money to go out with friends. Sometimes it is hard to draw the line between parenting a teenager/young adult son and parenting one with schizophrenia. Am I being too hard? am I not being hard enough? thank you for replying, it means a lot to me.


#8

HI Leiann,

Thank you for reaching out. This has helped me today. :slight_smile: I feel better, at least for the moment. I am still mourning what could have been for my son but accepting this new normal like you said needs to happen for healing.
Jax


#9

Thank you…I think this is the hardest part…I cant seem to stop thinking about what could have been for my son. I mourn for him and his future and I mourn for my family and the road ahead. I have to dig into school or I will lose myself in this despair… the hardest part, this suffering, so few understand… Thank you for reaching out, it means a lot.


#10

Hi Omi,

It looks like your granddaughter and my son are on very similar paths…They just prescribed him with Risperdal and Prozac. I cannot say the pain I feel when I watch him take these medications…I see the look on his face and I know he is asking himself why his brain is broken and why this has happened to him… I would take this a million times over for him if I could. Thank you for reaching out… I think the fact that I am now opening up in this forum means I am healing in some way… small steps :slight_smile:


#11

Hi there,
I have a court date with my son next week for a decision he made before we realized his illness… he is now in the court system and his lawyer said that if we mention his mental illness, the state will want to take him away…this is how Colorado treats mental illness… jail or an institution. This is over a 3 dollar can of coke, and we are going to trial because his school sees him as a trouble maker and Colorado wants to make an example out of him.


#12

@jax I’m in CO. We had my sons court date moved by the judge because they new he was not well. The judge ordered us to get a mental health evaluation on our own OR he would have the state do it. Which meant likely a few months in jail to wait for a bed in Pueblo state mental hospital- the only place they do competency evals -which can take months to a year. We got the private eval and my son will come home today from a transition home. So you do have options here in CO. He will go to court for a ticket next month but since we did the evaluation ourselves they will not take him. They don’t want him in jail, they want to see he is taking better care of himself. If you need the name for the doctor who did the eval., let me know. Medicaid used to cover her costs and they may again in July. So far it cost me 640. Total should be around 1000. But oh so worth keeping him home!


#13

@jax This was the most stressed I have ever been. The reason we had to tell them about his MI issue is because on his first court date he was in and out of court and back and forth to the bathroom (likely hallucinating) and when it was his turn he was gone. AND when I talked to the judges assistants about the next court date they told me to write a letter about his psychosis (bad information from them). His father actually stood in for him at court (2 times) (second son was in the hospital) and when the judge said he could send him to Pueblo for an eval., his father said all for a speeding ticket (sincerely)? Then the judge said ok - you get the mental health eval done (and we had no idea where or how - no one told us any info. we had to figure this out all on our own) come back on the next court date and tell me how your son is taking care of himself (meds/doc) and have the mental health eval started. Ended up the court date and the mental health eval were on the same date. My son was determined to go to court. I told him - you go to court they will haul you off to jail and pueblo. His nurse was with me and explained that he may have to wait a few years in Pueblo - so he opted for the mental health eval in Boulder. (phew). I think this will likely get some of his charges dropped. If your son is ok to go to court I’m sure you will be ok but it couldn’t hurt to ask your lawyer about the evaluation. You could have an appt. just in case?? I will email you the doctors name in case you need it and I think I have another name (more pricey).


#14

Yes there is hope - you can follow my story about my son’s schizoaffective disorder here ;https://transcendingdarkness.wordpress.com
It is not easy but hope remains we have had 4 ER VISITIS THIS YEAR, and yet he is still positive about the vocational rehab program that he is attending and has hopes and goals for the future. If he is not with people who have hope the change because there is hope do go to school it will be for your benefit and for those you attend after finishing


#15

I am inspired and impressed that you are able to undertake this education right now. My daughter always wanted to work for NASA but is a senior working on her bachelors in psychology. I know she changed majors due to my son’s illness. Her best friend was, in a way, lost. It’s not sadness, it’s grieving. I always thought we would beat this - my son would be the exception. He is 100% free of hallucinations and delusions, but struggles with depression and addiction. Like many others have related, he rarely showers and his room is a mess. There’s still a Christmas giftbag in his room with his Christmas gifts in it. He is articulate though, good sense of humor, a pleasure to be with. Much like someone with autism, he just doesn’t think of those social conventions of showering and trimming his toe nails, but he has a good heart. I think we have to look at what success means. Does it mean superficial attractiveness? Does it mean striving? Does it mean contentment and happiness? If your son was the “Enron” guy - successful by society’s standards but whose actions ended up hurting many people - no moral compass - is that success? My son won’t be leaving the nest soon and does struggle with feelings of isolation, confusion and bewilderment because of the very traumatic events of his life when he was hallucinating. Thank you so much for your dedication and research. We need you. Please use your talents to help these souls and their families. Best wishes to you and all that you do!


#16

I admire you, @jax and encourage you to keep moving forward. The further you go, the more people will listen to you. I too am older (ten more than you) and have gone back to school to finish an MA so I can get to a position where I will be heard and in a position to help those with my son’s illness.

As far as hope? I am having twinges. My son applied for a job the other day and has started buying items related to cleaning and self care. He lives with his dad and while I buy all of his food, clothes, etc. , he won’t talk to me so we have these strange ways of communicating through social media. Whatever works. Lately, he sounds like he used to sound. His sentences are more easily understood, he’s not as angry, little things that only a parent would notice. Something is changing and I think its for the better but I won’t let myself go there because I know better (the shoe-drop feeling you mentioned), but I am hopeful - more than I have been since the day he was diagnosed.

Hang in there - you can so do this!!


#17

Great to hear your son is interviewing and cleaning up. I can’t remember - is he on meds? I communicate a lot with my son via texing and I live with him! I’m getting a little more face to face but I think he’d rather text if any. Face to face I get more simple answers. I’m good. That’s cool. No, I was thinking of taking the bus.


#18

It is my life too. I wake up everyday in hopes that I might run into my son at the store again. That happened last week. He didn’t want to talk to me. I’m glad I saw him. I felt so happy. I wanted to hug him, I know that may never happen. I did see him though.


#19

Our daughter was (finally) diagnosed 20 years ago, when she was 19 and trying to start college. We’re all doing OK, and have been for years.

We’re very fortunate that her symptoms terrified her, and she felt great relief when medications worked. She’s medication-compliant, and has been micro-managing her own meds for about 16 years, in frequent consultation with her med docs (psychiatric nurse-practitioners).

Her psychotic break, which occurred after years of puzzling behavior, was of course a real horror show. Getting services in place took months, years.

She has always been sweet, and when we explained that we were not capable of meeting her needs at home, she agreed to move into a group home. They did the paperwork to get Medicaid for her, so they’d get paid. After a few months they transitioned her into semi-independent living with supportive daytime check-ups that gradually faded.

(Soapbox alert …Of course, 20 years ago the onslaught of budget-slashing was just getting going in earnest. These days, many folks who consider themselves to be conservative are destroying our country’s ability to help people in desperate need. Our fight to obtain SSI only took about 18 months of concerted effort, back then. A couple of years ago when she accidentally earned “too much” money changing adult diapers in a nursing home part-time, she lost her SSDI and it took us nearly two years to get it back though her diagnoses had not changed. The budget cuts have decimated the number of workers available to process claims.)

We’ve paid for two thorough neuropsychological evaluations to document her disabilities, the first 19 years ago and the second two years ago. The comprehensive reports have also helped us and her big sister understand her individual pattern of strengths and weaknesses.

We’re very fortunate that she agreed to let us be her guardians–both financial and medical. She’s always had severe ADHD and learning disabilities, so she knows she simply cannot manage money. And she trusts us.

We’re now in our 70s and her sister has agreed to take over the guardianship when we get too debilitated or dead to continue. This long haul will outlast us. But there are many happy times. She’s a sweetheart, always positive. Good things can happen.


#20

He’s not on meds but something is happening/changing and I don’t know what it is or how to describe it - but something is definitely happening to him for the better.