Family and Caregiver Schizophrenia Discussion Forum

Son going off meds again - Housing dilemma


#1

Hi,

I came to this site as Savanna back in 2008, and found lots of helpful friends. Son N had been through a lot since then, so have I. Three years back he shoved me hard (painful fall) and he got jailed (second jailing for aggressing me). On probation for the past 3 years, though, he’s been lovely, on meds (Abilify Maintana shots).

He’s mostly always shared my 2-bedroom flat in San Francisco, on or off his meds; there are now no there relations (his dad left the USA permanently) and my son has no personal friends. I’m 65, single, and a very protective sort of mom; N is now 35.

As soon as son’s probation ceased in September he decided to go off meds, which I only just learned now when he refused his due injection. He’d been doing well on just 300 mgs every 10 weeks - such a modest dose compared to what others report taking; but still he believes the dose harms him.

Also he’s 100% lacking insight no matter how many arrests, hospitalizations and evidence point to his illness.

So here’s what I want feedback about: The caseworkers are pressuring me again to make him move out of the flat as I’d initially told my son I would do if he refused meds post-probation. I find I cannot do it. N’s SSI is way too low to pay for a crappy hotel, never mind feed him and support his pot, tobacco, and soft drink cravings. I cannot afford to supplest him, being retired on a limited budget. N’s payee has been sending me rent, which covers what I spend on him at home.

I am angry that the case management will be dropping him, that they are not apparently drafting him into a Laura’s Law court-ordered AOT program - for which he amply qualifies but seem to expect me to initiate such a program - which will only make me N’s adversary all over again.

I think the probation-appointed case management should handle this. Also, from past experience I know that making N homeless is a no-win proposition - also suggested strongly by the case management, who accuse me of “enabling” my son. He’d be flat broke, vulnerable to violence and simply deteriorate while he decompensates.

Also, he’d be at my door night and day begging to come home or just use the bathroom.

Although I am dreading the prospect of his decompensating again at home, I feel it’s a better option than tossing him out. People are saying that’s wrong-headed. How wrong-headed is it? Am I wrong-headed?

When off meds N gets very loud, shouts out at neighbors, and can almost randomly aggress me if I confront him even in small ways, say, request he leave the house if he’s going to shout. I cross my fingers that he gets a psychiatric arrest again or effect one myself, need be - and there have been multiple such arrests.

Please reply with what you other parents would do in my position.

Thanks, Savanna


#2

Dear Savanna,

Our family is in similar situation with probation still requiring meds. This is my plan:

First, I will ask the courts and the FACT team to keep court-ordered medication in place. And a few other requirements of probation.

Second, I will keep all of my own legal options open as far as petitioning for involuntary commitment IF NEEDED. I 100% agree with you that this should be up to the courts and the caseworkers and treatment team.

Third, if my son goes off his meds by his choice because the court would no longer support his stability and wellness, I will NOT kick him out because of this.

Fourth, I will give my son a list of rules for both of us to follow at home. These rules will be something like, no yelling, no threats, no drug use, no alcohol use, no physical or verbal aggression or abuse, no disruption of another person’s sleep unless there is an emergency. I will let him know that I will first offer to take him to outpatient treatment options, but that neither of us can live with these behaviors.

My son would only become homeless if he behaved in ways I could not live with in our home. There is no way I will ever take responsibility for my son taking his meds. Our relationship is incredibly important to me and I will support him in ways that he requests and accepts, but I will not let professionals make me feel guilty for them not doing their job. It is so common that professionals have told me to let my son become homeless that I just wonder now, is it because then I won’t know that they are not helping him instead of me requesting medical treatment for a vulnerable person who cannot fend for himself?

Also, my favorite definition of enabling: doing something for someone that they can do for themselves. Sometimes if I do not feed him, my son does not eat. Sometimes he does. So I try to see where he is with his symptoms and provide for his basic needs based on what he can and cannot do. My estimate is there is about a zero percent chance he could live independently at this point. But maybe someday.

I’m sorry you are going through this. I worry about what will happen, but I’m trying to take in every good moment because when my son’s illness is treated and he is supported by a treatment team, he’s great to be around. So I know it’s the illness, not him. But that would not help me if I had to make the decision to kick him out (again) because he was being aggressive or disruptive. I would just be making a vulnerable person more vulnerable, but my own survival and health have to be considered at some point.

I am angry at the broken-beyond-repair “system” on your behalf. Of course your son’s medical treatment is their responsibility. I might ask them, not in a mean or angry way, why can’t you help him now? What’s stopping you from keeping him in treatment and keeping both of us safe? Just so I could know.


#3

Dear H&H,

Wow. THAT is a blessing of a response. THANK you! You’ve eased my uneasiness about both my decision and the pressure I’ve felt ignoring the caseworkers’ advice.

You’ve also offered a fine plan - yours for post-probation issues - from house rules (very GOOD guidelines) and how to approach the case management team. Yes, I will aim to put the onus on them to keep my son in a treatment plan, logically through our SF County Laura’s Law ordinance. I also appreciate your comment that you will not be responsible for keeping your son on meds - that it’s the case management’s job. I feel this is essential: I am not a ward orderly, I will not be a dictator-mom, I want only to be mom.

And like you I have a loving connection normally with my son, unless and until he’s too far derailed to reach at any level and intervention becomes vital.

I like your definition of “enabling.” My son sometimes cooks for himself, sometimes not, like yours. But I try to let him fend for most of his meals and at-home needs. On his own for shelter & food, off his meds, there’s no way he’d handle it, socially or financially.

Thank you again so much. You’ve given me hope, courage, and a sense of solidarity with another mom who’s walked the same miles.

Savanna


#4

Hi there. I’ve read your post and S response. I have a different position than what has been discussed. Firstly, let me say that my 24 year old son is the love of my life and I would do anything for him EXCEPT enable his demise. He has been in 3 treatment programs and does well there bc he is forced to take his medication, he is safe and supervised and he is away from substance abuse. These programs have been excellent with very good drs. and therapists. I am in the situation now in which my son is soon to leave his current living program after a year and we are going to have to deal with all of these tough issues (I have experienced all that you have)again. However, while on his meds, he is capable of making his own choices. IF he follows the support plan we put in place for him, he will receive our continued financial support and help him work towards recovery and success. However, if he breaks the contract, relapses, stops taking meds, we are going to tell him that we will not support him in his demise and he will have to figure out what to do with himself. It is giving me a lot of anxiety and I don’t know if I will be able to follow through with the homeless threat but he has to believe that I will because otherwise, he won’t ever get better. As much as I love him, I have to do what is best for him and that includes making incredibly hard decisions. If that makes him hate me, then I will accept that. All effort is to getting him better and if that causes him to be mad, hurt, angry, then that will have to be the case. I don’t think the advice they are giving you is necessarily negligent or shocking. It is risky and I’m afraid but we can’t afford to keep putting him in these very expensive programs and at this point, it has just become repetitive. It is time for him to take some responsibility for himself to the extent that he is able. He cannot live at home because we will all go down with him. Our survival and health has been greatly affected and we cannot afford to go down any further ourselves. Pray for us all.


#5

I am 61, married, and have an afflicted 34 year old, not on meds. She lives with me, hates my husband, is sometimes aggressive verbally, but never physically. I worry what will happen when I die, as there is no one else to care for her (her father is dead, and I don’t know if my current husband will continue to support her, although he says he will). If I had a way to get her out on her own, I would do it. If she was using drugs in my home, abusing me physically, etc, as you have to put up with in your home, I would be hard-pressed not to kick her out although I worry about a pretty young woman being homeless… I am afraid that when I pass she will be homeless anyway, if I can’t figure out a way to get her into care from the “system” since I have no assets to leave behind other than my home, which will pass to my husband (her step-father) since he basically paid for it.

I have no real advice for you, since I haven’t solved my own situation. I only feel that your own safety comes before the need for your son to live in your home, that the system is failing you by not helping you keep him on medication, that he has no right to take advantage of your kindness by using pot and/or other drugs you don’t know about, and that our ages are against us protecting our children forever.

Good luck in sorting things out.


#6

Hi Rosie and Old Blue,

Rosie, it’s great that your son’s done so well in the programs, and for his and your sake I hope very much for you all that he’ll adhere in the future to his treatment and meds.

Since my son and I have been struggling now for ten full years with the ups and downs of this illness I’ve learned that turning him out of home hasn’t worked to reverse his stance on meds resistance - in other words, he doesn’t agree to take meds in order to return home. Rather, he just keeps getting worse out there until something he does leads to another psychiatric arrest or jail.

The torment it causes me to turn him away has not been worth the effort toward getting him back in treatment because I am deeply averse to the idea that it’s ethically okay to eject mentally ill insight-lacking, essentially handicapped individuals to a status of utter deprivation and homelessness where they are left in an ill wind to fend for themselves.

Nor, due to this same lack of insight, is my son capable, as you assert your son may be, of figuring out BEFORE her decompensates that he ought to make the choice to stay on meds, for his own good. That’s why I lean toward keeping him at home and sheltered until forced treatment becomes imperative.

It’s terribly hard and risky for me personally - which is why this time around I mean to pressure the caseworkers to route him into a court-ordered program and make it clear to him that it’s the law, not his mom that’s doing it.

Yes, Mom Blue, our age is not ideal for the long haul of tending to a loved one with this condition. I’ve set in place a Special Needs trust so my assets, including a fully owned home will go to my son with allotments for ongoing supervision in order to keep his assets secure, even if he goes off meds. It’s a small comfort because we can never know how things will go once we’re gone ourselves, but it’s the best I can offer.

This week I’ll discuss things with case management and son too has a meeting with them Wednesday, at which they plan to steer him toward meds and/or enforcement of Laura’s law. I am not confident they will actually tow the line and enforce that law - extra work for them - when they can lay it on me instead with the “Homeless or Meds” gambit. I agree with Hereandhere that these treatment teams seem to drop the ball on the parents when they can.

Well, best wishes to us all for now, and thanks.

Savanna


#7

Thank you for putting it into those words. Your sentence and the paragraph that follows put words to the confusion in my heart that has been occurring for 2.5 years now and threatens to eat me alive at times.


#8

I, too, feel all that you are expressing. I have a hard time at the thought of putting a mentally ill child on the street. I haven’t done it yet so tough talk is easy. However, he is much better right now, and if we don’t scare him into making the right choices, he will either end up in jail or a group home. He is afraid of being homeless or in jail and so right now that is our leverage. We, too, have set up a special trust for him also so that he will be well provided for once we are gone. The thing I cannot do is have him live at home again nor does he want that. There is constant tension, irritation and the prospect of worse. We’ve been that route and cannot do it again. I am not familiar with Laura’s law and caseworkers, etc. I don’t know of any support other than what we provide and pay for. We pay for him to see his doctors and therapists who do not take insurance and the 3 programs he has been in have been a fortune and very little has been paid for by insurance. We cannot continue that route, so I don’t know what to do. One of his psychiatrists has a daughter with sz so he has been incredible for me. He also treats a lot of sz and worked on drug trials of Clozapine before it was approved by FDA. He is mostly responsible for where we are. He also knows how much I have fought for my son and has told me that I have done all that I can do…so I don’t know what’s next, only that for all of our sakes, we need to keep trying to make him want to get better.


#9

I appreciate you sharing this viewpoint, Rosie. With firm advice from several professionals in the past year, I have come to believe this also. It is a hard but necessary way, at least for some of us, to truly care about our loved one. I know first-hand stories from at least two persons with SZ and other stories from families of a person with SZ who have told about the fact that it took “hitting bottom” (likely either in jail or at a homeless shelter or similar) for the person with SZ to get the help they needed and they were each doing very well subsequently. One was even employed by NAMI! I think that this is another place where using LEAP can be helpful in having a trusting relationship. If you have that relationship BEFORE they get so sick that they turn their back on you and anything that makes sense to us, I think it will be easier for them to choose a path that is truly beneficial for them. This has been our experience so far when I told our son that he could not come home (because I knew he would not be medication-compliant). Now we’re praying for medication to work so that our son can either come home (he is currently in a personal care home) or live independently. In the meantime, we visit him as often as we can, take him outings, etc. Meds are required where he lives, but he is taking them without any push-back.


#10

I am glad to hear your child is safe and taking his medication. I am afraid for my son to try independent living again because I think he will likely relapse to smoke pot and then forget to take his meds and things will spiral down… but maybe not. He’s made some big strides and I hope that if he knows we are serious, he will keep it together, and with a lot of support, build on that. I know that he doesn’t want to live like that and that he really wants to go back to school, etc. so I just have to hope and pray!


#11

I also need to say, if I haven’t already, that he is doing well enough to tutor both college age and high school students in calculus and physics and he just got a part time job. His time management is getting better and his hygiene is improving. We are a long way from where we were, thanks to Clozapine and good care. However, he is about to try independent living again and I am afraid. He lacks insight and refuses to commit to giving up pot but he has been in this program almost a year so I hope that will be the difference this time. He doesn’t push back on his medications. But if things start to spiral down, he will forget and then things will go to hell fast.


#12

Great that he can tutor! And has a job. Nice to hear that he’s come a long way. I can understand your fears about the independent living again. I hope it goes well.


#13

The fact that your son is doing so well is encouraging to me and to many of us, I’m sure! You must be so proud of him! I agree, there is no rush to living independently as long as he is doing well living with you. There are also residential treatment programs (some are day only) around the country that are geared to helping the person learn coping skills, gain knowledge about his illness, and to help him gain insight so that he is more likely to stay on meds. The person would have to agree to being in the program. The ones I know about cost a lot of money but may have partial scholarships or even take some insurance. We found one that takes our son’s private insurance. Unfortunately for us, he got sick again and had to leave the program after 4 weeks. Now his illness is even worse than it was but he is on meds in a personal care home…this illness can be so complicated!


#14

Your email touches on our last 3+ years. My son had his psychotic break spring semester of his sophomore year of college. We had to bring him home in full blown psychosis and try to figure out if it was substance induced or sz. We got him into rehab first and it became immediately clear that something else was going on. The signs of sz were becoming clear. We have become very familiar with the residential treatment programs you speak of and we have spent a fortune. The first program he entered had him there for 5 months and then into IOP at a sober living home for 9 months. He then reentered another residential treatment program for it’s maximum stay of 10 weeks. We then let him try 3 months of independent living and he couldn’t do it. So now he has been in an excellent residential treatment program for 10 months and I’m hoping it will be about 12 when he leaves.
He has agreed to all of these programs and insurance has paid some but we have had to pay a lot. 3 programs is over the top but he has gained ground each time. The program he is in now just happens to be the lucky number 3. He is finally on the right medication, is in a great program where they keep pushing him and he seems to be developing some insight although I am not sure yet. He has never acknowledged that he is sick or has a substance abuse problem until recently. His therapist told me that in a recent group session they went around the group to say what each was recovering from and my son said he “was in recovery for psychosis!!!” That is a huge breakthrough.
Please don’t think we have beat this horrible disease by any means. It is just that we have been working at it relentlessly for 3+ years and we are finally seeing him gain some ground. Also, he has had no cognitive decline for which we are so grateful. He will never be the same as he was and we still have a long way to go with no guarantees that it won’t go to hell in a second. I am just here to help anyone who is just starting out or who needs some answers because we have been through a lot, taken him to Johns Hopkins, Emory, 3 treatment programs with some of the best psychiatrists and therapists we can find and I have learned a lot and am glad to pass on what I have learned to those who need it. However, we are also fortunate that we have been able to afford all of this care. Not many can and we are reaching our limit.


#15

Oh Rosie, I am very happy that you are seeing good results with this third program for your son. Bless you for all the care you have made available for him, despite expenses. You are the total opposite of one of my son’s friend’s parents. Although they could have afforded to try to help their son for years, after only three months of psychosis, and only one facility, they turned him out into the world (from that facility, he never came back home) and turned their backs on him: the entire family cut him out of their lives.

I hope things continue to go well for you and your son.


#16

Thank you for sharing! I relate to relentless! You bring encouragement to continue the battle. The scary part is the realization that successes are likely to be up and down over time. There may be no such thing as becoming “comfortable” in this journey but we can take one day at a time and keep working toward improvement. I know that there ARE housing resources, private and government-funded. I find one of the biggest challenges is in figuring out what the resources actually are. I am not familiar with this but came across an organization (and website) called American Residential Treatment Association. Also, a state-specific Department of Behavioral Health it seems is another place to look for help with government-funded programs for housing. And I second your concern (individually and as a society) on the guilt of privilege to be able to afford costly programs. “Afford” for us means, at least for now. Long-term is a bridge we have not yet crossed. Here’s wishing your son many more successes, and for your perseverance in managing the journey as best you can for him and for yourselves.


#17

Thank you oldladyblue. I think that it is immoral and despicable to do to a child what you described from that one family. Our children are our responsibility and our treasure. We brought them into this world and it is inhumane to abandon one who is sick through no fault of his own. I think everyone has the duty to care for loved ones and fight the good fight no matter how hard until it is just no longer doable. We hope that the same care would be given to us if we were the ones with this diagnosis. I don’t mean that we have to be afraid in our own homes or become sick ourselves from lack of self care. That then becomes a toxic situation for everyone. I just mean that we do the most that we can with the resources we have to try to achieve the best care possible for our children without bringing danger into our home and making us sick too.


#18

Hello All,

I’ve been following your views and thoughts. Still adamantly in the camp that if possible and not eminently harmful to myself as caretaker-mom, it’s not right to evict a schizophrenic son who wishes to remain home safely, I wrote this email (follows) on Monday to the caseworker team–and have had NO REPLY. Which I take to mean they plan to do nothing. I had hoped to move them to action. Please comment if you wish.

Dear_______,
As your client’s mother I realize that I disappoint in my trepidation to force my son out of home, particularly after I expressly stated at one point to you and to him that he could not stay if he went off meds.

The problem I have now and deep down with that action is that I do not believe it will be effective in getting him to agree to meds. In the past it has never worked: we spend a bundle on hotels, he still refuses treatment, and eventually gets booted from the hotels, and winds up in custody, where court-ordered meds ensue. Or worse, once in a homeless status he also refuses meds until there’s a 5150 or arrest.

Ethically I am deeply opposed to these so-deemed solutions. I believe that it should be incumbent on the court system and his case management to effect a court-ordered AOT Laura’s Law maneuver at this stage, given his history that qualifies him for Laura’s Law enactment; given the fact that he lacks insight into his illness and persistently refuses meds; and I strongly believe that the parent of an adult schizophrenic son should not bear sole responsibility via a draconian “NO MEDS NO HOME” threat to veer him toward compliance–especially since that method does not WORK and frankly endangers my son.

Pitting the parent against the mentally ill son also only further endangers the parent, who in the eyes of her son becomes the enemy. Honestly, I will feel safer sheltering him at home than by inciting his rage and sense of unfair rejection if I were to boot him out.

A severely mentally ill adult is no more endowed with the capacity to self-sustain than a sufferer of Alzheimer’s disease, and it is not right, just, or reasonable to turn the most vulnerable such persons out to fend for themselves.

I ask that your team please take over the necessary moves to keep my son on meds and in treatment and that you leave me out of the equation: the court system, the law alone should arbitrate and insist upon his absolute need for psychiatric oversight and meds.

As his parent, as the sole person, absent a father, siblings, other relations or friends, my son has only me for family, only our home for sustenance and refuge. I do not want to sabotage that by becoming overnight his adversary again.

Please support me in this effort.


#19

Hello @Savanna, I am sorry the case management team seems to be dropping the ball. I just read what Laura’s Law is. I am in Florida and laws are different here. Only one time (out of 4 times) did a hospital team arrange a place for my daughter to go after the psych ward. I called/visited that hospital social worker daily for 3 weeks and wrote letters to the hospital staff regularly about my fear of having her come home. They found her a place but she had to be voluntarily med compliant, and my daughter refused to commit herself. It would have been an 18 month program to help her re-adjust to life with her illness and medications. To me it was a dream answer. To my daughter, with no insight, it was an insult on top of the involuntary 4 week hospitalization. After the bed was given up, I was told by the same social worker that if I made her homeless, that “other” government programs might pick her up and help her, but that sounded so “pie in the sky” to me… WHAT other programs? I got no answer, so she came home and has been home now for 2 years.

@rosie94 yes, I believe NOW that the well-to-do parents who turned down care for their son from their Innisbrook golf club home are immoral. THEN, they were the only other family I knew with an adult child suffering mental illness, and I was told that type of action would be the correct one: to force med compliance or be banned from the family. My own son was convinced by that family that I should turn out his sister and that I was a fool for supporting her. He has since changed his mind, but he doesn’t help me to support her even still, not even visiting our home (my family take home income is less than $40k a year and my daughter gets no government support as of yet). It is a real struggle.

@hope4us yes, you are right: take this one day at a time and keep working toward improvement in this up and down battle. It is a very big challenge to find resources to help and not feel so alone in fighting for solutions.

@Hereandhere I never thought of giving my daughter a list of rules. I haven’t tried written communication since she is just 20 feet down the hall. I just knock on the door and hope she will open it to talk to me (after she asks her voices about me and my purpose). Maybe I should try regular written letters to her under the door.


#20

It is so sad when people turn out their family members with brain disorders because they think this will make them hit bottom and seek meds. I wonder if they would feel differently if they understood anosognosia and realized their family members have no way to understand that they need medications?

On the other hand…

The young female who did a consumer presentation at our Family to Family (In Our Own Voice) had been made to leave her home by her parents. They had younger children, the young woman was abusing drugs and bringing all kinds of people to their home. Her life on the streets was not pleasant and after being raped, she returned home and agreed to take meds. The woman told us she thought her parents had done the right thing.