I think that sounds very accurate, Hope. The mourning doesn’t go away. We just get used to carrying it.
I feel like I’m such a different person than I was before my son became ill. Who could ever imagine…?
I hope you’re doing well, and I hope your son is in an OK place right now.
Hello to all of you,
Still here, lingering in the background. Not much news about our son Lou. He is back at the state hospital in SoCal. I’ve had 2 conversations with him, he sounds very flat, I’m sure it’s the meds.
It’s always very sad for me after speaking with him. Not much hope of a future for such a promising young man. I guess you can all chime in on that.
The rest of my family is good, we all are coping. Shalom AnnieNorCal
Edit: he does not want any visits at this time and knows very little about what is going on or that’s what he tells me. It’s been over 2 years since I’ve seen him.
Hi @Day-by-Day, That a big thing isn’t it? When we learn we will still be a person, just a very different person than before. We had no way to know or imagine what laid in store of us and our children. I hope my son is in an okay place now, so hard to know. Like @AnnieNorCal, its been a while since I have seen him (January of 2018) Hopefully my son has reached the stage where his scz is calming down a bit. I hope that’s not a false hope.
I am resuming a life.
I hope you and yours are doing okay.
I have also observed such kind of TV shows in psychiatric settings…it DOES seem wrong!! I am amazed at the clarity your son is showing. Won’t he be discharged soon? It sounds like he would be a great candidate for a day program or an Assisted Outpatient Program, or it actually sounds like he could do very well at home or on his own, perhaps with supportive services. Or maybe he could and would attend a NAMI Peer support group. What do you think?
I think he’s doing very well. His symptoms are mostly negative and he’s done a really good job of working on them and understanding how to recognize and handle them. He has insight and is acquiring some maturity. We think he’s close to being ready for discharge, but he is at the hospital on a Not Guilty by Reason of Insanity verdict, is potentially dangerous, and there seems to be another whole layer of things he has to achieve before they will let him out. They don’t seem to want to talk to us about it so he’s taking it one day at a time.
He has the option of going to court this summer and asking for a conditional release. When he does that we’ll finally see just what it is they want before discharge. This is the hospital in Washington state that has had all the trouble with their forensics program, including an NGRI patient who was released to a group home and killed another resident with a coffee cup. So they’re redoing their whole program and my kid is kind of caught in the middle of all that, I think.
He would do really well in an outpatient setting, I think he could for sure live with family and get work or go to school, with support and keeping stress low. He wants to be a massage therapist.
That’s what he is working towards and what we are hoping for.
@WAmac This sounds encouraging! A possible positive I can see in his remaining in the hospital awhile longer, is that it gives more time for the medication to work but if he is truly well enough to be discharged, it is unfortunate to be caught up in the politics of change. At least it is hopefully change for the better for others yet to be treated there.
Stay hopeful and I can tell that you listen to your son well. I believe that goes a long way toward trust and building bridges to agree on things for mutual good.
i am not doing well, son has been in hospital for 4 weeks now, very mad at me for calling 911.
he was non compliant with meds and acting out violently to members that live in my house.
Now he wont see me, wont take my calls.
How do I let him come home, how can I not, I afraid this cycle will never change.
I am so sorry @Justsad. The cycles can make us feel quite hopeless.
Is there any chance that you live in an area that will provide your son with housing if you don’t allow him to come home?
I work for a dentist part time. When people say that we usually think it is code for “I really hate the dentist”. Will have to rethink that now.
On a more serious note, more and more studies are finding good oral hygiene is necessary for good health. For years has been heart health but now looking at dementia–brain health. Not that I want anyone to forgo seeing the dentist regularly ( I am just as bad and I WORK there), but if you have dry mouth add a mouth rinse designed for it and get a water pik type device in between visits. You are a good contributor to this site so want to keep you healthy!!
I am so sorry. Two years ago when I assisted in the involuntary admit of my son the first words out of his mouth when I came in to ER (before they found a bed) was I am never speaking to you again. He was restrained, I leaned over kissed him and said that is ok, I still love you. It took awhile for the mad to go away and for him to trust me again. It was hard.
It is also hard to make them accountable. Mental illness does shift the line of accountability but they still are human and still capable of knowing right from wrong when it comes to harming another human. (Excluding a psychotic break–but in that case the hospital is where they need to be not home.) If you do not feel safe, do not let him come home. It does not make you a bad parent.
You never know, for other people that might be the real reason they say they are busy. Our lives ended up so disrupted from what felt like being terrorized in our home at the time.
We just started sliding into that floating space over an abyss trying to get through each day and night.
I used to talk about it - yeah, lot going on my son has scz - finally I guess I have talked it out.
Each situation is different, but there was a point when I was advised to not let my loved one come home upon hospital discharge and I did exactly that because I knew he would not get better and would end up back in the hospital. With complete refusal to take meds after several hospitalizations, he agreed to be treatment-compliant in order to enter a residential treatment program. It was that or I would take him to the homeless shelter. Apparently, he did not want to live at a homeless shelter! If a residential treatment program is not an option, there are more states now using AOT (Assisted Outpatient Treatment) even for those who have not committed a crime. Or being treatment compliant could be a requirement to live at home if safety is not a concern. However, evicting someone from your home is easier said than done. It is not an easy journey no matter what if the person is not able to recognize the need for treatment. But there IS hope for improvement over time. Our loved one has now been med-compliant for 9 months and is stable, even if he is still not able to fully acknowledge his illness and need for medication. We hope for continued improvement.
Sigh. Such a long time to not see your son. I do hope that the resumption of your life these past months has lifted your spirits.
Although many have not seen your children, many seem accepting the illness for what it is, and learning to live with unresolved issues.
My daughter is stable. I was able to go visit my son and grandsons for 4 days, and leave her here with friends looking in on her and getting her food. She did well, and called me often. It was the first break in 3 years. It did us both a world of good.
Every day, I remind myself to be grateful for st least one thing, no matter how small.
Somehow I had missed the main point of Family to Family when we took the class. Its not about sacrificing your life, its about continuing your life even though you have a family member with a brain disorder.
I know its for the best that my son not see me or his father. I hope that his current life continues to work for him. And I really, really, hope he will be one of those people that experiences his brain clearing a bit later in life. At this point that is probably more realistic than hoping he finally takes meds some day.
My life has continued and its a good life. The details of his life that I take care of are still my priority. Each time I contact him by text for whatever I need in regards to his Medicare, Medicaid ssi, ssdi and SNAP - he responds with what I need and I am at peace.
Do you ever send him an ‘I’m thinking about you today’ message? or send him little updates or pictures? Do you think he would respond okay to those kinds of things? Sometimes I share things with my son just for my own heart’s sake. Its nice when I get a little chuckle out of him.
Your hopes for your son, from my view, are summed up in that sentence. His current life is working for him. Unmedicated, he is making it work. That to me, is such a great situation. He gets the help he needs from you, and you are at peace. Sigh. With this illness, it seems he is doing well, and so are you.
It’s funny, your post reminded me that my father was NEVER happy with me, up until he died. He disapproved of almost every life choice I made and let me know, for decades. He couldn’t tolerate me as a smart sane person, heaven knows how he would have acted if I’d been disabled in some way. Help when I needed it, and good wishes and approval when I didn’t need help, were all I ever wanted. It is funny to look back and see his bitterness so clearly right now.
That NAMI advice is key, and it’s what we’re trying to figure out how to do. We have to keep ourselves from falling into that horrible hole, and somehow try to live the best lives we can, despite the grief we’re feeling over our children. Maybe that’s what “acceptance” is?
I’m glad you can feel some peace, Hope. We’re all traveling such similar yet different paths. I wish peace to us all.
I realized recently that I am having one of the best Spring seasons I have had in a long time. My son is fairly stable, and I feel I can really relax in my downtime away from him.
Dear friends,
@oldladyblue The exercise routine I started last July (can you believe its been that long?) has helped a lot. Finding 60 minutes a day cut down on my laptop time. I did 60 minutes until January, at that point I went up to 90 minutes because while I was gaining muscle I really wasn’t losing fat (I was not dieting). I don’t get 90 minutes in every day, usually just 4 times a week. Finally the fat is coming off, slowly but surely. Now a 60 minute day seems easy;)
@Vallpen I wish I could feel comfortable contacting him for some sort of little happy contact that isn’t about his meds or his SNAP renewals. My fear is that he would be in a good place and contact from me would trigger an episode His delusions about us have made him so sensitive in that regard.
@Cerium (former hope squad member:) I do think I am learning to live with the unresolved issues. We did come a long way - from undiagnosed to diagnosed to getting him on ssi and ssdi (so huge) which makes it possible for him to have a place of his own and pays for his transplant meds.
@Day-by-Day (who often got me through things minute-by-minute) You are so right, we have to figure out how to stay out of the horrible hole and figure out how to put our life back together. Years ago, during the kidney failure years, I realized that when we do find ourselves in a horrible hole, somewhere in a land far away from everywhere, we are very lucky if just one person comes to find us and offers us a hand to help us get out of the hole. They can’t pull us out of the hole, we have to take their hand and help ourselves.
@Hereandhere and everyone else, This site and everyone on it has been that hand for me. And probably will be again, I don’t know what the next chapters in my son’s life hold. I am able to NOT think about it constantly anymore. I look at Vallpen’s art and remember there will be bad days, it might be best if I just let them surprise me instead of worrying about them. I have done what I believed is best in my son’s situation.
Like @Day-by-Day, I wish us all peace and the path to get there.