I’ve restarted this introduction too many times
and I’m still hesitant to say anything negative about helpers! My mom went to a few local NAMI meetings, looking for resources yo help support my son with sz. The leader of the meetings is disorganized, forgetful, and disagreeable at times. She has her own challenges, including a husband with RA and early dementia. How can we suggest a new volunteer for leadership without volunteering? Neither my mom nor I have the energy or experience to be good volunteer leaders, but the current situation is such a difficulty that I no longer want to attend.
Oh gosh, @Annie_Krause , don’t worry - I think we could all write pages about unhelpful NAMI folks.
I ended up here looking for help BECAUSE of my NAMI support group. The leadership couple took a couple of months off once and the group blossomed and became a wonderful place. Those leadership folks were so out of touch they didn’t have any knowledge about applying for any sort of financial help.
Is there any chance of another NAMI nearby? Or maybe an online NAMI support group?
It is hard to find good information. I’m in these trenches with my son who is 19. Was in college aerospace and we believe he was using substances in particular high concentration THC Dabs, shatter etc. We firmly believe this usage escalated and caused a drug enduced psychosis. He does not have insight into the situation.
Here is what I am finding out —
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There is a small group called CRAFT. Try to find one I believe they are in Colorado, they have an 11 week protocol / lessons. You can do the class online. They are extremely helpful for directions on caring for yourself, your family and your loved one going through this nightmare.
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patience is essential while your loved one is in this awful experience. Their brain needs time to heal…
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we are being told that clozapine is the Only FDA approved medication that gets rid of psychosis and helps individuals gain insight.
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write to the FDA, they have created rediculous barriers to receiving this life saving drug. - ATHELAS is the solution we are finding. (Just got the machine awaiting the medication) this is an at home wbc counting machine!! It does not hurt and is quite Amazing. I did the test first do my kid would feel more comfortable about the process. They are on the tens sustem and can get meds fed exed to you directly.
— CURESZ.
That is all for now as we are all trying to navigate this nightmare sending prayers for complete healing!!
Nami
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I am sorry you have had a less than positive experience. NAMI Family Support Groups are led by trained volunteers who themselves have a loved one experiencing a mental health condition. Someone in the local NAMI leadership would have had to recommend the person for training. That doesn’t mean everyone is good at facilitating. And often, volunteers are in short supply. A Facilitator is not expected to be a resource for everything, but rather to facilitate the discussion with and among participants. The NAMI model relies heavily on GROUP wisdom, that of similar experiences shared by those present at each meeting.
In these days of Zoom and online technologies, you are not limited to attending a FSG in your locality if you are willing to attend an online support group instead of in person. You can go to your state NAMI website and look for support groups throughout the state, or even in other states should you so desire.
I have participated on multiple NAMI Family Support Groups. Each has its own personality and I liked some better than others. I hope this is helpful!
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I went to our local NAMI chapter twice. It was right after my 15 year old daughter was diagnosed and she was actively psychotic. I found the meetings incredibly upsetting. All anyone talked about were their 40 year old children living at home, punching holes in walls, police needing to be called, etc. It was a small group sitting around a table and the leader, who i found to be very smug, did nothing to welcome me. The meetings completely drained me of hope. Other chapters are active in advocacy and host educational programs. Ours does nothing. I hope other NAMI chapters are more supportive.
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Thank you for the reply!! We’re pretty rural, but looking into some online meetings now.
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Thank you for the reply - currently looking into online options!
Thank you for sharing! This is very similar to our situation. We’re looking into online options now!
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Per NAMI, when I was a member I felt there was great variance in the local chapters. Its split role of advocacy and support tended to cloud its mission focus, and family members and “consumers” were sometimes too consumed by day-to-day coping to be of much benefit to their peers, or might serve to distract or demotivate them. In response NAMI developed mental health training programs like Family-to-Family, Family & Friends and Peer-to-Peer for more consistent and informed information and training. I feel smaller directed groups like these or individual counseling is a better setting for support, as they are better structured & facilitated, and not so easily derailed.
My parents and I attended a chapter an hour’s drive away rather than the local one, and we dropped out after a couple of years as I became more steady in recovery. It was a good chapter that was well managed and I had opportunities to attend the national conference and watch presentations by prominent researchers and advocates like Dr. Fuller Torrey. Still after a while we learned all we could learn, and it was time to move on.
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Just wanted to chime in regarding my experience with NAMI.
First, thanks for reaching out and saying something! Too many times we accept thinking that doesn’t help our situations!
Second, you’re not alone. We are right here.
Not sure this will be helpful but here it goes.
My son is 26yo and started to show signs much earlier than when he was diagnosed. Everyone thought it was teen anxiety/depression. His pediatrician missed it. But my son must have sensed something because he started calling himself autistic in high school (because of his weird thoughts that differed from his peers.)
I won’t go into the details of his story but trust me it’s been a hellish journey.
And just plain isolating and a lot of grief for our small family.
I agree with others that NAMI has a confusing mission. I’ve had many people in the healthcare system say to go to the meetings but I found them depressing and not helpful. No in-person support groups. Lots of experience of sharing the horror show of schizophrenia or bipolar. Most of the advice is generic steps for acceptance, etc. and Schizophrenia is a SMI that hardly gets talked about in a rational way.
So what has helped us?
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CRAFT. It’s a behavioral program (scientifically studied) that takes you through a set of steps to communicate better with your loved one - especially those with dual diagnosis. I participated in a study on Zoom and did worksheets and role-played and started feeling much better.
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Dr. E. Torrey Fuller’s website has many resources and easy to understand fact sheets. He has written many books on schizophrenia and our health system.
https://www.treatmentadvocacycenter.org/about-us/dr-e-fuller-torrey
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When I was beginning my journey I watched Living Well With Schizophrenia by a young woman and her now husband. She is so open and comforting about her experience. Her journey is different than my son’s; she does not have a marijuana problem and her symptoms started after her teens. But she is such a great , honest resource. Any facilitator could learn a lot from her.
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When I’m at my lowest and needing support and someone who’s seen it all and has learned from it, I listen to the podcast " Schizophrenia: Three Moms in the Trenches." They are my support group. Their guests are from all over the world and provide so much insight.
I hope this helps.
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Thank you so much!! I will share these resources with my family as well.
I haven’t had great experiences with NAMI, although I am glad that it exists and am a member. I think part of the reason is that there aren’t that many people with schizophrenia/ schizoaffective disorder (<1% of population) and so the discussion is often running far afield of what is relevant to my family.
Another problem is that some of the volunteers are insensitive and/or preoccupied with rules and protocols to run a meeting that allows for community building.
I was looking for in-person meetings, but there are none in my area even though Covid restrictions have lifted. I even volunteered to get trained as a faciliator, thinking that maybe it was a matter of their being shorthanded, but was told that no they were fully staffed. The organization seems to like the remote approach.
I get that one or two remote groups would be useful, but aren’t support groups about community? Zoom meetings don’t build community.
nowwhat, I have the same issue here in the Midwest of the US! It was so depressing to attend meetings where more than one of us are in our cars because we had no privacy at home.
I find this forum so much more helpful.
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I know what you mean! I did just order one of Dr. Torrey’s books for my family and me. Thanks for the help.
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yes I’m grateful for this group!
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Absolutely. If your local NAMI affiliate comes across with excessive negativity (keep in mind that people DO need a safe place to vent) but fails to provide encouragement (I SO believe there is help and hope for almost everyone), find another Family Support Group within the same affiliate or a neighboring affiliate. Search for affiliates and Support Groups through your state’s NAMI. Many Support Groups meet online so that could be a great option. For much of what is discussed, it really doesn’t matter where you live. And all NAMI Support Groups are confidential.
@Raveninthegrave , can you give more info about CRAFT? The acronym is too generic to bring up anything online that is what you are describing. Love all your suggestions!
I dont find Nami overly helpful for me so I go to Alanon-not focusing on the ill person but on taking care of ourselves- alcoholism is a brain disease like schizophrenia. We did not cause it, can’t cure it and can’t control it- my so been ill for over 20 years-he’s off his medications-started using drugs-been violent with his neighbors and is now in jail- breaks my heart he did so good for a long time-I haven’t heard from him since he went to jail-he has not given them permission to talk to me but I did tell them his condition and he need medication hopefully the shot- he’s lost his housing so I do t know what he will do when he gets out-he’s been violent and I won’t accept his behaviors at my house-he’s been I psych hospital 3 x since July-the first time was for 3 weeks and they put home in a short coma because his behavior was so out of control. I hope you find the help Uku are looking for-
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