How many of you have an unmedicated family member and what's happening today?

[Wederington034985]

Welcome and so sorry you are going through this.

The LEAP method, developed by Dr. Xavier Amador and “I’m Not Sick, I Don’t Need Help!” is a book you should definitely read. It will help open communications with your daughter, if possible. There are also YouTube videos from the LEAP foundation, that can help summarize the techniques.

Volunteers of America has free resources for your help and has outreach chapters in most states. Googling your state alongside the name is the best way to find the phone number. The Involuntary Commitment resources (typically EMS or your local DSHS or Community Mental Health) are a better step than police. NAMI, also has the resource list for involuntary commitment laws of your state, including family submitted petitions. We have used our state’s policy to get my brother permanent housing and treatment after years of fighting the limited resources in our area. Unfortunately he cannot and has not really improved unless he took “forced” treatment. He feels better now, but a certain underlying level of his delusions haven’t gone away. They’re mostly muted thanks to long acting injectables.

So many hugs. Please stay safe.

[carolinamom68]

Hi everyone sorry I haven’t seen on I have a lot of stuff going in the family.Asher is getting their med’s but I have to pay for them from my social security ck.i only have the Good RX card for discount s.i have been trying for years to get their SSI AND MEDICAID BACK.When they are not on their med’s ALL hell break’s loose.

[hope]

Welcome @IndyMom , I’m glad the thread has helped you in some way. There were some wonderful people that got me through those early years. I am so sorry to hear about your daughter’s diagnosis. I hope you are doing okay, I know I felt as though I had landed in a foreign country when we realized our son’s issue, suddenly all of the parental rules of “how to fix” didn’t apply anymore. Overwhelming is a good word, it takes some doing to get your arms around the issues presented by schizophrenia.

@IndyMom

She’s a completely different person since she had her first psychosis.

At first all you see are the differences. Later you will see the similarities.

@IndyMom

prior to October I only had a very limited understanding of the disease and never thought about how painful it is for family members.

Schizophrenia is hard to understand, the different presentations don’t make it easy - all of our family members are unique even within their similarities. I had absolutely no idea what was going on with our son. My Family to Family teacher said we were “normalizing” our son’s behavior. We didn’t know enough about schizophrenia to recognize its presence.

One of our most prestigious posters, @Maggotbrane has suggested that we think of schizophrenia as a neurodiversity. Our family members are neurodiverse and there is a path forward for the vast majority. That path requires some locating and a lot of support along the way.

As @Wederington034985 has suggested - Dr Amador’s LEAP videos will help you understand your daughter’s reluctance to take meds. NAMI’s Family to Family course is available online these days - sign up to take it as soon as you can. My husband and I were able to chart a plan to move forward after taking the class.

Thank you for holding us in your prayers, I suspect many of us have had you in their prayers when they reach out spiritually to those parents who don’t know yet.

[hope]

[oldladyblue]

I am so sorry @carolinamom68 that you are not getting help paying for Asher’s meds. Have you found an attorney that will help try to get the SSI back? Usually they charge nothing upfront, and can be a big help at finally getting SSI approved. Hugs. You are fighting the good fight, and not giving up. That is most important. Good luck, hugs, and if you learn all you can about this illness, you will make correct choices for your loved one.

[oldladyblue]

@hope you always give such good advice. YOU are the reason I found this site, this particular thread came up on a google search, when I was desperate to understand what was going on with my daughter. Thank you for being here, being strong, and helping your son and all of us.

@IndyMom I felt exactly as you do right now, in 2016 and 2017 when my daughter first got ill. I have a success story with my daughter as her 24/7 psychotic days are long over now. I hope you find success also, it is a long hard road to help someone with schizophrenia.

@Wederington034985 is correct about Dr. Amador’s book, and his LEAP method of being able to reach those in psychosis and bring about healthy changes. I found that book worth its weight in gold, and read it 3 times total while helping my daughter.

[IndyMom]

@oldladyblue , @hope, @Wederington034985

Thanks to all of you for responding. I appreciate all of your advice and suggestions. I purchased the book and I’m in the process of reading it. This is all still so new, but I’m trying to use the tips to better communicate with my daughter. I’m sure I’ll have to read it more than once. I also plan on watching the videos for more live examples.

We have joined a support group from NAMI. I find it comforting to know that we’re not alone in this fight. My husband finds it both alarming and comforting. At first we assumed she’d be fine if we could just get her the correct medication. We’re learning and working on accepting that she very well will not be the same person as before. I’m not saying that we won’t still love or accept her. It’s just feels like we’re grieving what was and what could have been. We’re planning on taking the Family to Family class. We’ve been told there is a wait list in our area. Someone from our support group suggested looking to see if we could take it virtually at a different location. Did anyone that the class virtually? I’m trying to decide if we’d miss something not being in person.

My daughter was arrested again this week. This is the second time in less than a month. We did have a friend suggest a local program that provides advocates for people with mental health issues while they are in jail. I’ve called them and I’m waiting for someone to call me back. Fingers crossed they have some suggestions on how to get her into treatment. She absolutely does not believe she is sick and refuses to take medication. At this point she’s stopped taking all medication because it’s not natural and she doesn’t want the chemicals in her body.

[Wederington034985]

I have been on the “no chemical” struggle bus when talking to my brother for years. The basic truth is that nothing, not even a human body is “chemical free” but talking them through the chemistry or rationalizing this to them when they are amidst their delusions is impossible.

The second tack you might take is reckoning that most pharmaceuticals are lab based analogs of human compounds (i.e you’re not introducing something that doesn’t form part of the human chemical soup) OR that animal based compounds are part of how we’ve treated ourselves for millennia. It’s just that we’ve become better at synthesizing them with technology, and removed the things we are more likely to be allergic to. My brother has horrific seasonal allergies so he’s more than willing to avoid them, even if he won’t ever draw the conclusion that invalidates his whole “natural is better bias.” (i.e If natural items were better, he wouldn’t and shouldn’t be allergic to large swathes of the natural world, go figure. From an evolutionary standpoint, the ability to create medications and foods that most people can tolerate speaks to favorable conditions both in agricultural genetic changes AND in medication synthesis, but I digress.)

The natural products are simple non simplified derivatives of multiple different chemical compounds that haven’t been properly separated. This has worked when I talked to my brother, which is why he has taken the medications he chose. Other than that, he doesn’t have options to refuse care and fortunately and unfortunately, he realizes if he goes completely non-treatment, he looses his friends and will go back to being isolated by his own mind. Due to his delusions (as they put others at risk) the least best option to keep him safe from himself and others is to wait and talk with him until he’s willing to accept some form of treatment and moving him to a step up unit in a mental hospital. If nothing else, sedatives, as sleep disturbances are indicative of decompensation or the beginnings of decompensation, keep some of his symptoms from getting worse.

[RishI]

My mom is unmedicated; she also has agnosia and will not accept treatment. She knows what to say to get the cops to leave when they’re called, and I haven’t had any incidents that would qualify her for forced commitment in our state. (If I were here for longer, there is a process I could go through, but I won’t be here long enough to carry it through. In the next state we’re moving to, it will be even more difficult to organize any kind of commitment, but I’m going to see what I can do.)

I’m moving across the country on the 22nd of this month, and she’ll be moving out. She has so, so many triggers and it isn’t sustainable for us to share our home space with her - which, unfortunately, is the only kind of help she’ll accept. She is on SSDI (and has more than the average, thanks to her passed father’s retirement fund which was never tapped) and an excellent credit score, so if she chooses to she can afford an apartment and/or vehicle.

She is functional enough to feed and clothe herself, showers daily, and is still relatively well-organized most of the time (able to do most things herself, even if it takes her a few tries, such as getting a car loan, which she did towards the beginning of her initial psychotic break.)

I worry about her constantly, but I can’t continue to live in the same home with her. I’m with her now getting her cellphone set back up, so with any luck, I’ll be able to at least be in contact with her.

Sending well wishes to you and your family on your journey! I hope your son is able to seek treatment.

[oldladyblue]

@IndyMom I understand your husband’s feeling that the NAMI meetings were “both alarming and comforting”. I often left those meetings crying, or cried during them. I learned so much and the emotions were so great, but it did feel better than not going at all by a longshot. Getting the class done online or in person should give you great help in sorting out your family’s future. I was so glad to do it in person, but doing it at ALL was THE smartest thing. You will learn so much and you can’t know now WHICH bits of it will be most important to you in the years to come.

@Wederington034985 you make some very good points.

@RishI I totally wish you the best of luck with your cross country move! Good for you! Of course you worry about your mother, you always will, but she has the ability to provide for herself, and now it is your turn to care for yourself without her in your home.

[hope]

Thank you so much for your kind wishes. You have done some good work to realize what is and isn’t possible. My son will never be medicated for his schizophrenia. He will take the other meds he needs in his life, but he will never willingly take psych meds. Its okay.

[RishI]

Thank you so much, for both of your messages. Reading your perspective and hearing your experiences, as well as everyone else here on this page, has helped me to reach that acceptance. I may never have gotten there otherwise!

[Mona]

@hope I am responding to your comment hoping that you’d be able to help. About the court order, how do we get that? I have been told that the hospital that the patient is admitted in can help getting it and the ACT team can help but nothing else. My husband has extreme delusions atm and he has been admitted to a hospital but they told me they won’t keep him for long since he isn’t physically violent or threatening to harm himself or others

[hope]

The people at the support group had successfully “framed” their family member (claiming they had done violence when they had not). Their family members were arrested based on those claims and ended up in front of a judge who did order forced meds.

By forced meds I mean that they are given the choice by the judge to take meds or go to jail.

[BigSis]

What a great and encouraging story. I’m glad your daughter got the help she needed.

[Maggotbrane]

@hope

@Maggotbrane has suggested that we think of schizophrenia as a neurodiversity. Our family members are neurodiverse and there is a path forward for the vast majority.

Funny you should mention neurodiversity, I’ve recently started taking (non-stimulant) ADHD medication. As side-benefits, I now can avoid arguments with Autistic and ADHD spectrum members who exclude mental illnesses from the neurodiversity umbrella and am much freer to talk about my possible ADHD DX than my SZA. A great many Autistic and ADHD folks have multiple diagnoses, so I’m not sure why the fuss. I suppose they don’t want to take on extra stigma, as unipolar depression and anxiety disorders are all most will admit to.

In many ways an ADHD diagnosis is far more subjective and medication options more limited. Only two on-label non stimulant options, and because of abuse, access to stimulants in my state requires $2000-3000 worth of evaluations for a qualified diagnosis of ADHD. Not that I wanted to go that route, but what gave me pause was my psychiatrist saying that he’d never seen much success in patients going with counseling, coaching or CBT. I haven’t had my ears blown back by the medication so far, but there may be some subtle improvements.

Predictably I guess, there’s been a period of second-guessing my SZA diagnosis, and lamenting I didn’t come to this conclusion sooner, and especially thinking I may not have even developed SZA if my ADHD had been treated sooner. In the end, I feel we all have to let go of potential past mistakes as much as missed potential futures, and deal with the issues at hand.

As far as my brother goes, he’s out of jail awaiting a jury trial in October. He has a weekly substance abuse test and pre-trial supervision (kinda like probation, before you’re convicted). It seems to be keeping him on the straight and narrow, if on the depressed side, so I have hopes he’ll make it through the summer which is when he typically has manic phases. I feel we’ve abandoned hopes that his hoarding will get much better, but at least it doesn’t seem to be getting worse.

[hope]

I have wondered how to start this post. In the end, I decided to start at the beginning. I strongly suggest that no one reads the whole thread - it’s terribly long.

My son’s name was Mike, since I worried he might run across this site and this thread, I gave him a different name. To my knowledge he never did see the thread. I don’t know how well a name change really would have helped if he had, there surely can’t be that many people with a kidney transplant, schizophrenia and, later, colorectal cancer.

We could always count on Mike to call us when he needed us. If he didn’t call me, he called his brother. His brother has been brother heroic throughout Mike’s life. Mike never gave up. When I said it to his brother after his death, his brother said, “no, he didn’t give up, but at the end, we had to carry him across the finish line”.

Cancer is a nightmare. Mike’s cancer was aggressive and was discovered late. He battled it with 5 lines of treatment, one line of treatment was experimental and was quite successful for over a year. Future people with kidney transplants who develop cancer and have that new line of treatment while on immunosuppressives will benefit from his efforts. He was pleased that he was able to contribute.

Cancer deaths are rough. Mike’s was no exception. At the end, bone and brain mets were racing to devastate him. The last week of his life he was treated with constantly increasing doses of Haldol for the brain mets. 48 hours before he died, he threw the Haldol across the room. I had told them they should not tell him they were giving him Haldol. I guess that particular nurse hadn’t read the notes.

He had been an outstanding cancer patient for 4 years. Never missed an appointment until the very end. He cooperated beautifully through an LAR, 5 lines of chemotherapy, and radiation on his brain and bone mets. He kept a meticulous journal for the research people. He took excellent care of his transplanted kidney (2009), the kidney functioned until the day he died. He did two weeks of physical rehab in January after his left leg and his right hip broke at the same time from the bone mets. He was delightful and humorous with the therapists, nurses and doctors.

We did refer to his mental illness in his obituary. After living with him the last 18 months, I knew that “before” Mike would have wanted it that way.

[irene]

Hi Hope, I just read your whole thread and found you and Mike to be exceptional human beings. I am so sad and sorry for you and your family’s loss of Mike. May your wonderful, and sometimes crazy and funny memories bring you some peace. Mike was a fighter for sure, and you are a tough, kind, compassionate mom for him.

[hope]

Thanks @irene, so much of our family’s struggle is written on the forum, I hope it helps others in their struggles. We were dealing with Mike’s scz every step of the way. We were fortunate that there could be some really good times during those last 4 years. After his cancer diagnosis, he let us back into his life gradually, which eventually led to me living with him those last 18 months. Living with him started when he began having panic attacks and developed a panic disorder. All credit to Dr Amador and the LEAP method, Mike found my presence helped him and I learned how to assist when he was panicking. (I’ve spent a lot of time on cancer forums - turns out lots of the normies have to deal with anxiety and panic attacks while fighting cancer)There were some wild moments in the car while driving into downtown Dallas for treatments during rush hours. Cancer is a full-time job. His brother, dad and I basically dedicated the last 4 years to his cancer fight. We had three “last Christmas” celebrations, each year he was sure it was his last Christmas. He had an absolutely wonderful Christmas in December. I told his brother, “we finally nailed last Christmas, it just took 3 attempts”.

Mike at his graduation from university. Mike at Christmas '23

[irene]

Lol, glad to hear you finally nailed having a great holiday! What a handsome and sweet looking guy Mike was! I bet he was a really cute, funny kid, just like my sz son was. It is good to hear he had a supportive, kind passage out of this life. It was amazing to have the whole family s support. The cancer treatments and sz sound like a place we never want to be and think we could never handle. I suppose we have to handle what’s given to us as best as we can, even when we think we are doing a terrible job of it. My prayers to your family and Mike.