After hospitalizations in the double digits in the last 6 years my son is pretty close to back to normal. He is on Clozapine and living in a group home. He attends a schizophrenia recovery day program 3 days a week and they have given him a job in the gift shop 1 day per week. He is currently training to run a 5k in March. Next year he will go to a step down program for 6 mos where they help him learn independent living skills and after that help him find an apartment. This is the most motivation he has had in years. I never thought it could happen. Last hospitalization they said he was severe and may have to live in the state hospital on a lock down floor forever. I know enough to know this could change quickly but for today I am so grateful. Never give up hope!
Clozapine (Clozaril) has been a game changer for my son. While he still has a ways to go, he continues to improve on it even after a year. He has had a lot of breakthroughs with insight that I never thought he would. While he definitely still has negative symptoms, this med is the only one that has improved them. He is working 40 hours a week at a small store. While we still hope he will finish college, this is a huge milestone from where we were a year ago.
One more thing. The only way we have gotten our son to do all of the things we have requested of him is due to our financial support. However, he was also smoking pot so that gave us more leverage to say that if you want our financial support, you have to stop that and do as we say. I know that doesn’t always work and we are no where near out of the woods. He has been in a program for a year where they have consequences if they do not do certain things: make their beds, keep their place clean with daily inspections, etc. and requiring him to be out of apt for a certain number of hours a day that he has to fill with volunteer work or a job. So he got a job. This was at the end of the continuum of care he has been on. As he has stepped down from less acute levels of care, they have amped up expectations and he will lose his phone or some other privileges if he doesn’t comply.
It is a long process to get their agreement. But one step at a time.
My daughter was totally against applying for SSDI while unmedicated (2.5 years). Now that she is 40 days medicated in a row, she is more willing to talk about the future. We have in the last 30 days set up future plans of how she will live when I am gone (my home has a back apartment and room rentals for income which one brother will continue to rent out). I also have a life insurance policy going into effect 1 Feb that will go to her other brother (he’s best with managing money) who has promised to keep paying house bills/groceries, etc. I need to do a will and change the title on my home. I will ask her to sit with me to apply for “government money” (I will never use the word disability again to her, that was a mistake) and hopefully get SSDI/SSI and food stamps for her. She currently has ObamaCare health insurance since I still work.
I feel much more calm now that I’ve got things in place that weren’t in place. When I am done arranging things to my liking, I’m sure I will feel better.
Talk to a social worker if you can. Most hospitals have them on staff or if you know of a mental health facility nearby you can ask to speak to one just as an inquiry. You can also contact NAMI (National Alliance on Mental Illness) and talk to them about your situation. I would push hard to get the SSDI in place it is essential. NAMI or a social worker should be able to help you think of ways to get it done in spite of your son’s objections. https://www.nami.org/Find-Support/Family-Members-and-Caregivers
Our daughter is the same way. She is so stable but doesn’t do anything except hang around her apt (near our house) with her little dog. She doesn’t watch TV, listen to music, read or anything she used to. Sometimes she goes on errands with me and has a case manager that takes her to the store or out to eat once a week. I always wonder if she’s happy but she tells me she is. It’s hard to see, but it’s so much better than when she was trying to be homeless and thought the FBI was after her. She’s a different daughter, but I believe her when she says she is happy. Maybe it’s as good as it gets, and I just need to go with the flow of the smile on her face. She has taught me SO much. Let go and let God.
Similar in many ways to my son of a couple of years ago. He’s stable for the past year or so on Abilify. My own thinking is that paranoia is part of Schizophrenia and that may be linked to what we on the outside see as lack of motivation. I feel that there is a fear of being in any kind of a stressful situation and how he’s going to respond to the stress. My son has been working hard at creating music which he sends to me and I post it to various Internet sites for him and he monitors the comments he gets. He’s been attending a couple of therapy groups including a men’s group that he says he likes to go to. When my son had one of his earliest episodes in which he became somewhat violent (breaking furniture etc.) his mother called me to come over immediately. I live a 10 minute walk away and by the time I got there it was over. I sat down next to him and hugged him and he just started crying. I think he was terribly upset by what he had done and didn’t know what to do to control his mind and the things his voices were telling him to do. I feel that a stable non-stressful situation feels safe and he’s fearful that anything stressful like a job could precipitate a return to a state of mind that must be terrifying. I think that I, and anyone else who has never experienced that can only imagine how frightening it is to not be able to trust the things your own mind is telling you to do.Hang in there. I don’t have any magic solutions, but I’ve seen some really good progress. It’s going to be a whole lot slower than you would like, but every day that he’s not getting worse is a good day as far as I’m concerned.
Oldladyblue, something else important to consider is a Special Needs Trust for your daughter. We had one developed for our son.
Basically it’s a way to protect your daughter’s SSI/SSDI and her Medicaid (once she gets those things in place) from ever being discontinued if she has assets over $2000. It’s also a way to formally set up someone to manage the money someone inherits.
It required a lawyer. When we die, half our estate will go to our daughter. The other half will go into the Special Needs Trust for our son. Our daughter will manage the Trust. Now, the government cannot touch the benefits our son is eligible for, including SSI, Medicaid, government programs for disabled, etc. It doesn’t matter how much money he has in the Trust.
Just a side note about planning for the future. You might want to look into setting up a Special Needs trust that would be the beneficiary of your assets. Using a Special Needs trust, your loved one’s benefits such as SSI will be protected, since the trust will hold the money, not your family member.
There is also now another type of savings fund available that protects your family member from losing benefits.
I haven’t heard of a special needs trust, or the rules about assets over $2k discontinuing benefits. Thank you @Day-by-Day and @Vallpen for mentioning this. I am going to have to make sure I set things up right. At least the wheels are in motion!
Yes, if someone gives your daughter money or pays for her expenses, she could lose any government benefits. That is one of the reasons why a Special Needs Trust is important. You might want to look at other threads on this Forum about SSI and SSDI benefits. You are thinking ahead wisely and on the right track! So glad your daughter is talking with you about the future!
I will have to re-think this disability/SSI thing I guess. My daughter went and got herself a job with an employment agency. It is a temp job, but I was pretty surprised. She did get her 3rd injection too (we had to change the appointment to after work hours and she let me pick her up from work and take her to the clinic). It is a group cleaning job with a team of others.
All good to hear. I was amazed when my son got a job last July and then got another. I hope it goes well!