NAMI site has a legal section I think. Are u in the U.S.?
1 Like
Sando, I am so sorry about the recent changes. I hope you hear about his ssi application soon. I hope you can find help through Amador’s LEAP. My son was very difficult and we never did get him on meds. By Listening, Empathizing, Agreeing to Disagree and Partnering - after many trials and errors - we were able to help him get to a workable life situation. While its “workable” from his dad’s and my standpoint, to my son its a wonderful life that he enjoys.
Over and over on the forum we have seen family members who have some sort of desire find a way to move forward, often not in the manner we parents are hoping, but forward for them. I struggled quite a bit with the idea of releasing my son to his journey. As you know already, it can be a wild ride at times.
The scz “specialist” psychiatrist recommended to us by our local NAMI gave us the advice that helped us more than anything, including recommending reading Dr Amador, LEAP and Dr Torrey. We were told to prioritize getting ssdi or ssi started along with all the benefits that come with it. Having my son’s medical care covered by having Medicare and Medicaid helps me sleep at night. SSDI and SSI make it possible for him to live somewhere on his own. SNAP helps keep him fed. He so badly wanted to live away from us on his own. Even though he works part/part/part time, working was something he wanted as much as not living near or with us. He feels quite self reliant and proud that he has a job.
I admire that you have always “seen” your son through his symptoms. Its not that easy, I remember the time when I could not relate to my son because I only saw the symptoms. When I could finally see my son again, THEN I could try to learn how to help him with his struggles. We seem to end up having to reinforce our parenting skills with super powers - even though on some days what I picture as a super power can feel closer to nailing fresh boards to broken boards rather than flying.
6 Likes
I’m with you! We need to coalesce. I was this last Friday at the hospital with my son, he was assessed but he was not admitted because he didn’t meet the criteria! Looks like meeting the criteria means: they have hurt someone already or that your loved one is already all bones! Since I expected that to happen bc on New Year’s Eve he was definitely a danger to others and he was let go 25 minutes after the ambulance got him to the hospital and according to the doctor who assessed him that day he didn’t meet the criteria of course much less on Friday since I gave him a tablet of Lorazepam to be able to get him to the hospital without calling the cops. I was not frustrated but definitely amazed at the kind of criteria being used these days. Right now even with the Abilify Maintena shot he’s delusional and hallucinating as if he didn’t get any medication on him. The laws regarding Mental Health are definitely twisted.
I’m definitely annoyed by our MH system.
Where do we start to change the care they need?
Our representatives in our area!?
We need ideas for solutions.
3 Likes
I so feel for you in your difficult situation. You need support and care for yourself. I know my NAMI friend, Mary helped me tremendously in the last crisis my daughter had.
Does his Dad and/or siblings help out with your son’s situation? It can make a huge difference. The last time our daughter had a crisis she had a therapist who worked with her. Also our older daughter hired a lawyer which is expensive.
The lawyer states that it is a three legged stool: medication, hospitalization, and outpatient care. If one is missing often there is a relapse or not full recovery.
Remember it’s not up to you to make him choose what to do but as best as you can come alongside and Listen, Empathize, Agree and Partner. This comes from Dr. Amador’s LEAP process. He has a book out called I’m not sick, I don’t need help.
2 Likes
My son is now home from his 6th?maybe its his 7th rehab. Once again, they promise they know how to deal with his mental issues and nothing has changed with his behavior. He is back to staying in his room all the time, sleeping at strange hours. They changed his meds. I kid you not, he has 8 meds in the morning, 5 pills midday and 15 at night!!! This is unbelievable. I wouldn’t mind as much if they worked. I hate that I have to dole them out, cuz he will abuse them. He is 26, will he EVER take care of himself? This disease is just horrible! He needs to get out and be around people and he doesn’t. His dad and I have to work so we can pay for all of these bills! He is back to talking to himself and the house is a pit cuz he makes messes and never cleans up after himself. I want him to live in a safe little bubble somewhere. I want to relax in my own home again. Sorry for being on the pitty pot, but some days its hard to see any happiness in this situation.
8 Likes
Oh how we can relate. We would measure in ‘hours’ a small break from the care-cycle. It’s harder when all this work seems to be producing no improvement.
Couple of tiny points of light.
-
You’re not alone in this suck-cycle. Still sucks, but you’ve got people here who can at least enjoy the pity party with you - without judgment!
-
Sometimes these new meds take several weeks to reach therapeutic levels in the bloodstream. Try to envision them slowly working which may give you hope to see some sliver of improvement.
And 3. Try to laugh at the absurdity of this crappy situation. My 20 year old son came home yesterday evening to bring some, not all, of his laundry. Where’s all of your underwear? I don’t know. What about all the socks we’ve bought you? No idea. But I’m tired. Goes to sleep on couch but not before creating a swath of debris that included Girl Scout Thin Mints, sunflower seeds, empty drink bottles, etc. While asleep his sweat pants drift down to expose his ample buttocks in the family room. So we went from peace and tidiness to filth and a full moon in mere minutes. I threw another blanket to cover him up but still. You can’t unsee some things. 
Hang in there. This too shall pass. Oh Lord PLEASE let it pass! Or at least stabilize. Or at least help him to learn how to properly use the drawstring on his sweatpants.
7 Likes
Thank you for your reply! I do try to laugh at the silly things that are done. My husband gets soo mad at for that! But if I don’t laugh, I’m going to have to start taking my sons meds! Yes there is comfort in knowing that I am not alone. I just wish we can find answers.
5 Likes
@Tippy Keep loving. Keep seeking. There are answers to be found. IMHO, there are no magic beans or easy paths to a fully-restored patient.
But, if you seek to learn and understand the possible diagnosis you’re facing, then you’ll see that there are answers to make it better. Maybe not answers to ‘fix it’. But answers to help you all live the best life possible. Keep crawling forwards!
2 Likes
My husband used to scold me for laughing at times - now he has advanced to the point he will quite kindly let me know that he “just isn’t in a spot to find something to be humorous”.
Love @Sando 's sweatpant drawstring advice.
My son will wear the same couple of shirts and couple pairs of pants until they are threadbare. He washes them regularly, he just keeps wearing them no matter how bedraggled they look. The past couple of years he even found a tailor to mend the holes, so he wears them longer.
He was alway way into his clothing, this has been quite the change.
Then, suddenly one day he will ‘wake’ up and he seems to be quite puzzled as to why he doesn’t have any clothing without holes. I will get a text about this concern. He will go out and buy a couple of nice shirts and couple of nice pants and the cycle repeats itself.
He’s been doing this for years now. Now it makes me smile whether he is in new clothing or worn clothing.
2 Likes
So sorry you are in this horrible club. My son is 30 . Has had numerous hospitalizations. Finally after years he started taking medicine , but we have to give it too him.,with meds he’s not destroying anymore. But he could never live without supervision. He just got into the ACT program in Delaware, and I’m praying it helps. Our goal is for him to get in supervised housing. I pray for this as it’s the only way my husband and I can enjoy our retired life. I pray for us all!
4 Likes
I keep saying I’m going to start a blog named “ laugh or cry”.
4 Likes
No kidding, somedays I really feel like throwing out the towel! It’s ok to acknowledge it’s frustrating and we don’t do it right all the time, we have to forgive ourselves for that. And I do too have the hope that this shall pass. There’s days that I think I will check in at the hospital to be fed and be taken care of; the least I’m the one who is going to end up taking the meds! 
In our house there’s messes that I end up cleaning and I try to think it’s a blessing and I still have a reason to move, there is punched walls, a job for my husband and little things for our son to clean since he’s the one who makes the mess in the first place.
Conflict inevitable but Contention is a choice, I heard this great podcast! I graspef hope!
3 Likes
Hope, This is beautiful what you’re saying about “moving forward” and “seeing” your son through the symptoms. Thank you for sharing this. Your username on here is so fitting, because your story is giving me so much hope for my brother. Thank you so much.
3 Likes
Hi ElleaCouru, You are welcome. I’m glad our story can give you hope. The lives of our family members are not easy. We all try so hard to figure out how we can help them on their journey. I’m glad your brother has you.
1 Like
Yes we put my son in an older mobile home we rented out. It was fixed up really cute, and he was proud of it.,ended up having to be condemned and demolished due to all his damage., unbelievable.
2 Likes
Just curious, after he destroyed the mobile home, where does your son live now? I have to get my son out of my house and I want to look at all options. I wanted to get him a trailer too, but my husband is telling me no. I just don’t think he can live in an apartment, too close to the neighbors. I think that he would get thrown out too quickly cuz he talks to himself very loudly.
I’ve been at the court couple of times looking for help with the same concern: can he be forced to get his meds administered by injection? The answer: he can be force while in the hospital after all legalities are in place and he fills the criteria which means being a threat to himself and others AND being psychotic. I filled out the paperwork to start that process, after I downloaded the forms from the website and took them to the court but the judge said that the authorities can’t pick him up to go to the clinic, she said it’s our job to convince him to go; that was about 5 months ago, I went back this week and same thing: hire an attorney I was told. The law says that when your loved one can’t make a sound decision a concerned person can decide for him/her but then it comes a lot hurdles practically impossible to get through. This is really frustrating!
One day at a time, sometimes is a moment at a time!
Praying for strength for each family caregivers. 
3 Likes
Unbelievable! Not only is it hard having a loved one with this disease, but then we also have to fight the system to get any help. When we are dead and gone and no one is taking care of them what will happen to them? It just makes sense that we should be able to get something in place while we are here to be able to help them. I too am praying for all of us to keep our strength and OUR sanity through all of this. I am going to try to talk to an attorney this week to try to get him on disability. I can’t get anywhere with all of this mess.
3 Likes
Hi Tippy,
I’m in IL, I’ve been told there’s better services in IA and to commit a person it’s needed that 2 persons go to the court and the person is committed.
Good luck with the attorney. I know I went to interpret my friend’s son to get him on disability, he hired one attorney from IA and he got positive results.
Keep the hope!
1 Like
If the US wants to seriously address the burgeoning homeless population, then we MUST address our mental health system.
Without caregivers, fighting every day, our loved ones often end up adding to the homeless problem. And even when we do fight, they often end up homeless and hopeless. Heaven help those SZ patients without a champion/rescuer in their lives…
3 Likes