Have you and your husband read the book”surviving schizophrenia” by E Fuller Torrey ?
I agree that the Family to Family class can also be useful.
The best thing I heard there is something that I remind myself of all the time:
“ with this disease there is no arguing … don’t criticize - don’t fight and don’t punish”
people with SMI are very vulnerable and can’t adequately defend themselves internally
Of course we are human and can’t help responding angrily but at least for me it helps to have the communication advice in mind as a reminder to back away so things don’t escalate.
I always regret the times I show anger or criticism because for me it isn’t worth the long hours of trying to regain some sense of calm with my son.
I want to save criticism for the most important things
there is so much to say about this and no easy answers I guess I’ll leave it at that…
Agreed. But… sometimes I can’t but think “wait a second, I’m being played for a fool! He’s got 24/7/365 butler and maid service! Etc”
And then my wife calms me down and reminds me of ALL the shi*t. And I’m like, “oh yeah”, and chill out.
As I’ve said in many posts, alcohol helps. And I know it’s a crutch/harmful/self-medicating/escapism. But I’ve given up a metric TON of pleasures and dreams choosing the life of Caregiver-of-the-Century so I’m keeping this one.
I agree about having given up SOOO much to be the caregiver of my son. I also like to have a glass of wine now and then, however, I have to hide it. My son likes mixing alcohol with his meds which is NOT a good combo. Its crazy the places that I have hid it in my house. My son searches while I am at work and has found it before and boy did I pay for that mistake!
On a side note, our attorney has filed an appeal for SSI benefits, I sure hope that it works this time!
I have the same problem. I put a keyed lock on my closet door and put the alcohol in there. I have to lock the closet every time I leave the house.
Of course if he wanted to he could break the lock, but he hasn’t done that.
Good luck with the appeal. I am really nervous about the process- I sent the Mental health residual form (found on this NOLO website] to my son’s psychiatrist but if he doesn’t deem my son sufficiently disabled I know we will be denied.
Fun fact and side benefit of SZ, sometimes patients have an aversion to tactile sensations. My son CANT TOUCH metal - since he was a toddler - always avoided it. Zippers, monkey bars, keys, etc. Will use anything to avoid direct contact. Said he could taste or smell the metallics. Soooo, I keep my alcohol in a metal flask… Hidden still but an extra level of protection. When life gives you lemons… squeeze them into your vodka…
Good luck on your process. I am not sure what application you are filing for. For disability? I am still learning all of this stuff and love this site cuz’ I am able to learn from others in similar situations.
I’m applying for SSI and Medicaid for my son. My husband and I aren’t retired yet and my son has never really worked - so SSDI isn’t an option yet.
Still I need to prove that his disability started before he was 22 which will be tricky. His voices didn’t start until he was older but he was diagnosed bipolar 1 and had his first psychotic episode at 17/18. The SSDI benefit is much better so I really hope that his record supports it once we retire.
Good luck with this. I am trying to get my son on disability and I want to get him SSDI cuz the with Medicaid there weren’t any options for mental health providers. One plan had psychiatrists and were not seeing any new patients. Just letting you know also that it is a long process. I filed the first application over 1 year ago. We were just denied which I am told is standard protocol. (what a joke!) There are attorneys that can help and you don’t have to pay unless your child get the benefits. I was hesitant about getting the attorney until now. He has filed an appeal. He also said the norm is 2 denials. My husband and I are not retired yet either, but I thought that because we are working, your son can claim SSDI. My son only worked a short time before this disease took hold. Good luck to you and hope you have success
Hi Tippy- I assume your son had enough earnings to qualify on his own record? Not sure how much work that requires but my son hasn’t worked much at all. I am pretty sure that you or your husband have to be retired in order for your son to receive funds on your records.
It is ridiculous that SS makes it so hard for people with SMI to get benefits. They ought to have protocols in place by now to make it clear what steps to take to make your application clear. I think it is a deliberate ploy to prevent people from getting help- like the insurance game.
I too am very concerned about the limiitations of medicaid. I am in california, so is is supposedly better here than elsewhere, but I know lots of doctors and hospitals don’t accept medi-cal patients. This is why I have been paying for private (Covered CA) insurance for my son since he aged out of my insurance.
I wish I can get my son to go to meetings. He would rather be at home pacing and pacing… He’s 28 and has been with us since he was diagnosed. It’s getting hard though. He always want beer, but he will guzzle a 6 pack in under 2 hrs. What a waste. Now it’s CBD wax… There is no moderation.
It took us 3 yrs to get SSI for our son. It’s been good too. We found a good Mental Health Center with caring workers. They actually call and ask how he’s doing. It wasn’t like that at first. The first Center we used it was like a revolving door. No personalization. It was an inter city facility. The one we use now is in the county we live in now. It’s more country that city. We are lucky. Finding a right Health Center is half the problem. After that things seem to fall in place, most of the time.
Hi, there! What type of Health Center does your son use? My son is so dependent on me for everything. I’m glad your son found a good place for services!
It’s called Mountain Valley Behavioral Health. We have to take him there and back. We set up his meds and administer them. He knows he has a problem and has little problem with us doing what we do for him.
my son, will ask for 1 or 2 mikes hards (he calls it beer). occasionally, like once or twice a month, so I get it for him. He is 25. He smokes a lot, and is now trying CBD, and trying to keep up on medications. I wish he would do the shots, so he wont forget. He says it helps with anxiety, or MJ, but I cant tell. I feel bad, I wouldnt want to hear voices, or see things, or
be out of it. It is depressing. My son thinks Im happy cause I work, but Im depressed and sad too. Mine wont go to anything…was exciting that I got him to go to grocery store once this month. we have nice pool and gym where we live, he wont go.
I know about the smoking. CJ likes the vapes but he uses it too extreme. He sucks it in so much I think he’s going to blow a lung. He’s using the CBD wax in a pipe and it makes him cough so bad. But it does help him sleep some. He does get the shot once every three months and it really works. About a week or so you can tell when it’s time.
We go through 1-2 vape pens a week. I get them in bulk through PerfectVape. 5,000/puffs each, disposable/rechargeable. He devours them. Pure nicotine. But I’ve heard it’s a common ‘drug’ for SZ patients.
And Bang energy drinks. Lots.
But getting him up and out is an ORDEAL. Everyday.
At present, we’re in a good place - he’s working 10-2, 4 days a week, as a volunteer at a place we know and love. It’s safe, close, and they understand.
And my son knows the house rules. Be safe, take your meds, work 20 hours a week (helping someone else!), and exercise 30 minutes a day x 3 days.
And he breaks these rules constantly. It’s exhausting. But when he does them - and feels better about himself - and I see a glimmer of light in his eyes - it keeps me going.
Wow! Good to know! CJ drinks Monster drinks so fast it’s almost like he’s drinking water. I heard the SZ meds make them so thirsty. Yep I see that. Luckily he helps us whenever he is asked. His main duty is to stay on his to stay on his meds. Like you said when he does he’s so much better to have around.
so I’m keeping this one.