Support Groups for Families Dealing with Mental Illness

Parent Q&A

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  • PDA or FND support group?

    Jul 1, 2024

    hi, we have a 10-year-old with PDA who has recently developed FND. Both conditions seem to be poorly supported by schools and our doctors. We would love to connect with other families experiencing either of these challenges to learn from your experiences. Do you know of any supportive groups? Do we need to start our own? 

    PDA = Pathological Demand Avoidance, if so, following, and you are not alone. I'm not familiar with FND. If this is like Avoidant Restrictive Food Intake Disorder, UCSD has a program.

    FND = Functional Neurological Disorder. 

    Check out We Get It Foundation. They have several local chapters.

    https://www.facebook.com/wegetitfoundation/

    Hi, our teenage daughter is PDA and we would be very interested in joining a support group of you were to start one. We find that many therapists and school staff don’t even know what PDA is, much less how to work with it. 

    I haven't found any local, in person support groups, but I regularly listen to podcasts from At Peace Parents, which I very highly recommend. They will be offering a 3 month online support/coaching group for parents with PDA kids that will start in September. 

    Please post if you decide to start a support group because I imagine there are plenty of families who would benefit from one. 

  • I have a young child with a severe mental health condition.  It started when she was 9 years old and she is now 14.  She has been in and out of school, however about every 6-8 months she has a relapse and I have trouble getting her care.  She is covered through Medi-cal and currently I am looking for a PHP (partial hospitalization program) where she can receive intensive mental health care services, counseling etc.  She is taking medication, however she still falls out of remission when she is stressed.   Currently, we are in a month long relapse and don't know what else to do.  She has been hospitalized seven times since she was diagnosed and still has not had any real life changing help; just crisis intervention,   several different medications, and some talk and play therapy. 

    I have been told Medi-cal does not cover PHP programs for adolescents.  I called around a few places to see if I could pay out of pocket and the price is approximately $1200 per day and the stay would be 8 weeks-not financially possible without losing everything we have.   The PHP coverage through Medi-cal is reserved for adults with issues such as substance abuse.  Seems a little odd.  Does anyone have any experience with this sort of situation.  This is my first time writing and I am trying to be a little discreet, but I would welcome any suggestions.   I have found that the mentally ill are seriously underserved, especially in this time of Covid.  I would like my daughter to have a chance at a somewhat normal life.  What I have been doing does not seem to be good enough; there has to me more help out there.  

    On another note,  I also been told that now is the time to get a conservatorship.  Any suggestions on who to contact. 

    Looking forward to some help

    Thank you

    I have an older teen on Medi-Cal and have also heard for many years that there is no PHP or IOP through Medi-Cal.  Have you thought about going through Mental Health ACCESS to request Therapeutic Behavioral Services (TBS) instead?  They provide in-home intensive treatment for a few months to try to heal an entrenched problem.  In the past I have requested up to 28 hours per week and ended up being granted 22 hours.  I recommend that you request it ASAP because there can be a long delay before services kick in and I believe the provider actually takes 30 days to simply observe before creating a Treatment Plan.

    Here are the phone numbers for Mental Health ACCESS:

    Alameda County:  1-800-491-9099

    Contra Costa County:  1-888-678-7277

    San Francisco:  (415) 255-3737

    Following up regarding conservatorship -- this is very difficult to obtain in California.  It is also a double-edged sword because if you have a young adult who is out and about in the community, perhaps not making good choices, then you will still be financially liable for any bad choices that they make if they are under conservatorship.  Some examples are:  stealing and damaging a car, driving while intoxicated, breaking into a building, vandalism, etc.  Your finances could be imperiled depending if your young adult is choosing a risky lifestyle.  It may  make sense for some families, but only if the young adult buys into a safe lifestyle.

    Dear Penelope:

      I am sorry to hear about your daughter's challenge.

     I have an adult son, who was diagnosed with a low-level of bipolar, at the age of 17--. Up until he reached 30, all was managed, without medication --he chose to bicycle and jog, stayed away from sugar and alcohol, stopped cigarettes, but then came the pandemic & once he started drinking again, but most importantly, vaping, his bipolar ups/downs became HIGH level--Today, that's where we are.  Husband & I turned to NAMI (National Alliance on Mental Illness)  .  Are you connected with the East Bay chapter of NAMI??  Classes are offered to friends/ family members--free of charge. Apart from the 'family to family' classes there are regular monthly meetings for family, friends and separate gatherings for the 'client'--yes, including children (sorry, I'm unsure how old the child must be).  Please reach out to them (located on Stannage in Albany). My experience is there  is a wealth of experience and know-how for getting help for yourself and for your loved one.  https://namieastbay.org/what-we-offer 

       All the best!

    I am so sorry to hear the pain your child and family is in. I wish you all the best in navigating these issues. I recently researched therapists for my daughter and found this organization: Bay Area Clinical Associates (https://www.baca.org/). They mention on their website that they are working toward being able to accept Medi-Cal. You could contact them to see how far along in the process they are.

    So sorry to hear about your daughter's challenges. My daughter has a complex set of mental health struggles and diagnoses, she has been hospitalized numerous times. Your daughter's school district should be a funding source. She will need an IEP for Emotional Disturbance. If you are interested in considering a residential program, the school district should cover the entire amount which will be around 13K-15K per month and will be a 10-18 month stay. The school district receives federal money for this.  Even if you decide not to go the residential route, it might be helpful to do some research and talk to a couple of programs to get an idea of what they provide and how it works. There are a lot of programs in Utah. A great resource for information is DREDF (Disability Rights Education and Defense Fund), they have an office in Berkeley and do most communication by phone. You will need a lawyer to set up a conservatorship, most lawyers will do an initial 20-30 minute phone call with you for free. Good Luck.

    I’m sorry to hear your daughter is struggling so much, I too have a teen daughter who is dealing with a serious mental illness and know acutely how hard it is to find appropriate help!  
    I don’t have any answers to your specific question but have 3 things to suggest that might be helpful.

    NAMI is a wonderful organization that offers support groups (currently weekly on zoom) and members may have recommendations. 

    Willows in the Wind is another support group for parents with kids who have mental health issues and addiction I think?

    There is a place with looking into called The Felton Institute. It’s only for early psychosis but offers ongoing support in a wraparound way. 
     

    I encourage you to get as much help as you can before she turns 18 and can refuse treatment.

    in case she is resistant, you may benefit from the book I’m Not Sick, I don’t Need Help by Xavier Amador. Look up his Ted talk about anosognosia. 
     

    lastly there is a group called FASMI who is working to push for better services and support for seriously mentally ill. There are many parents in this group who would understand though many have adult children.

    best of luck, I’m in it too and it’s awful, And COVID has made it monstrously worse. Wishing your family all the best!

    Hi, my daughter started having severe mental health problems around the same age. We don’t have medi-cal so I have no experience with that but might be able to help navigate. I have dealt with 4 hospitals, numerous therapists and inpatient and my insurance company. My daughter has been inpatient, IOP and PHP. Please feel free to email me (ask the moderator for my info). I’m happy to help. I found it was vital to have support as well. My daughter is now 19. 

    I am so sorry you are going through this and have run up against all of these financial barriers in mental health access. As a family physician myself, I know that partial programs are a rare resource, so this is not an easy world to navigate. Your Medi-Cal managed care plan should have a patient navigation service, and some counties also have a patient navigation service usually embedded in their county’s healthcare delivery system (ex. Alameda Health Services in Oakland). Within these systems you often find more robust support for mentl health, especially medical social workers experienced with Medi-Cal, because these systems care for most of the patients with severe mood and other paych disorders. Berkeley doesn’t have such a system, but I would imagine Lifelong FQHC system as similar support. Those most experienced at navigating this system are often academic child and adolescent psychiatry residency programs, where their attending physicians, residents and fellows are actively working in the outpatient, partial and inpatient settings. Thus, they know the criteria for admission, what is required to get the admission coveredc and the likely benefit for treatment at the various facilities. They may be able to arrange for a “direct admit” to a given program, where they place the admission orders from the clinic until the care of the child is assumed by the physician who is actually on service at the partial program or hospital.

    Hi, I'm sorry your family has been going through all of this. My daughter went through a local PHP virtually (Rogers) during COVID and it didn't really help. Hopefully they are starting to meet in person. You didn't mention the specialty area that your daughter needs help with so it's hare to see if the program we tried would help. I called SO many programs, so I understand your frustration.

    On another note - again, without knowing anything about your child, we have found a diagnoses called PANS and PANDAS which causes psychiatric illnesses and since you've tried so many things already and they haven't worked, I'm wondering if these diagnoses may be something you can look into as they have a different treatment.

    All the best.

    I sent your post to child psychiiatrist friends of mine, and I hope their responses might be helpful: 

    “This person needs to speak to the child’s psychiatrist. The referral to higher level of care would come from them. Most partials take Medicaid.”
    “Agree, talk with the kid’s psychiatrist, assuming she has one, as something underlying the relapse is not getting treated.  If she does not have one, now would be the time to get one or get a second opinion.  The parent may want to check through their insurance or the Psychology Today Therapist finder. This tool has  separate search capabilities for physician psychiatrists- I would not revommend a psych NPs for this patient. It can filter by location, insurance accepted, etc. Parent may also want to connect to the local chapter for NAMI for helping navigating resources in the area.  Agree with COVID not helping any of this.  Has made it much harder.”

    Hey Penelope,

    I am so sorry to hear you’re having such a difficult time. I am not a parent with experience in this area but I do know of this organization that may be able to be of help. They work with families who are having difficulty accessing appropriate mental health services for children.

    https://www.mhautism.org/

    I am not sure if they will be helpful in your specific case but just figured I’d share the resource.

    Take care!

    Thank you so much to all who have taken the time to respond.  I feel better knowing there are individuals out there who have been through similar situations and who want to help.  I have to say my daughter has full support team.  She has had counseling at UCSF, UCSF Benioff, Pathways Girls Inc, TBS.  We currently have a county case worker,  she has an IEP with a 1:1 aide and a psychiatrist and therapist who are really awesome.  The problem is, my daughter finds it so hard to communicate.   I really feel her anxiety has gotten to a level that is unbearable for her.  She is showing signs of OCD and already has a diagnosis of " unspecified psychotic disorder" and anxiety disorder.   She continues to state that she has made a mistake and needs to know how to fix it.  This has gone on for 30 plus days.   

    On another note, I have gotten some more clarity on the insurance.  First,  we had a private plan with Kaiser before 2017 that made things a lot easier in terms of referral.  NOW,  We have Alameda Alliance, however, since we have been Kaiser Patients for so long,  they allowed us to continue with them as the primary provider.  Unfortunately, Kaiser only treats mild to moderate cases of psychosis so then we were referred to CHO.  However, at this point when I am trying to get her to Next Level of care, Kaiser is pointing the finger at Alameda Alliance,  Alameda Alliance has stated Beacon is in control.  After contacting Beacon, we were told to contact Kaiser again.  I asked our Pediatrician for a referral to an PHP or IOP an she went to the "chief of psychiatry" at Kaiser and he referred her back to Alameda Alliance.  At this point I don't know who covers what.  I am caught up in red tape and my daughter is paying the price.   I have registered with Nami and hope to find some help.  I have been to several meetings with them in the past, however I felt like no one could understand my situation because everyone suggested that a 9 year old could not become psychotic or schizophrenic.   The illness stared at age 9 with paranoia and delusions and has progressed from there.  She also got her first period about the same time.   Will keep trying....  I plan to file a grievance with Kaiser.  Any help would be appreciated

    Any help would be appreciated.   

    Penelope

    My heart goes out to you--so painful and difficult.  I asked a friend who has many years of child development/psychiatry practice in Sonoma. 

    She said  "If this were Sonoma County, I’d call the Sonoma County Mental Health Access Team. They provide services for kids on Medi-Cal (psychiatrist, case manager, wrap around services, some kids have gotten home visits and therapy).

    She needs to access all the outpatient services that can be offered….that might help and if not, if she can’t be served in a public school, sometimes the school will split the cost

    You kind of have to fail full outpatient services first before partial day or residential.  This woman needs an advocate!

    (Since it sounds like she hasn’t accessed that.)

    Hi Penelope -

    This sounds so hard. If you need help with the complaint process or figuring out who should cover what, I would suggest contacting the Health Consumer Center at Bay Area Legal Aid: https://baylegal.org/what-we-do/health-care/health-care-access/. Phone # is 1-855-693-7285. 

    Hi Penelope, I feel for your daughter! It sounds like she is struggling with a lot of different symptoms. I am a mental health professional working in Contra Costa County at a psychosis specialty program that also treats kids with at-risk symptoms including hallucinations and paranoia. It offers intensive services in line with Coordinated Specialty Care (CSC). I wonder if Alameda has a similar specialty psychosis program through the county. I know Kaiser has similar programs but not as fully fleshed out as our program. In terms of her current symptoms, that does sound like OCD, though her psychiatrist I’m sure would weigh in on that. If it is OCD, Rogers does have IOP and PHP programs focused specifically on OCD, but I believe they only take private insurance. Not sure if Kaiser has a contract with them or not. In general, my understanding is that you would have to switch to a private commercial health insurance to be covered for most IOP or PHP programs. At least in Contra Costa County, Medi-Cal doesn’t cover these kinds of programs and instead the county programs utilize wraparound, TBS, and other intensive outpatient services. Hope this is helpful…

    Hi Penelope, I’m sorry you’re having to deal with this. I am too. My daughter is almost 17 and is engaging in some drugs and a fair amount of nonsuicidal self harm. A lot of stuff I really don’t understand. This is especially frustrating when it’s so hard to get in touch with experts to consult. I have spent the last three weeks calling, inquiring and filling in Web forms. I have created a spreadsheet of the resources that I have contacted so far. And more that I have not contacted yet. It is by no means comprehensive, but I would be happy to share it with you. Please ask the  moderator to give you my email and I can send it to you in an attachment. 
    For the sake of my daughters privacy I have asked BPN to hide my user name. But I hope this doesn’t prevent them from sharing my contact info with you

  • I'd like to know if anyone has experience, advice, or suggestions of a local group to help me in dealing with a family member that has mental health issues. A little background - at 36 years old my sister was diagnosed as having bipolar affective disorder (approximately 7 years ago). Within the last few years, her highs/lows have gotten much more severe than what I had previously seen. Since her initial disclosure that she was diagnosed with bipolar affective, she has never mentioned it again and is very elusive if she is on medication or receiving treatment (therapy or other). She has pivoted the conversation of mental health to being affected by PTSD (traumatic experience at 18 yrs old) instead of being affected by bipolar. She is located on the East Coast and it is difficult to know what is true/real or not. Her cycles are becoming more intrusive on my own mental/emotional health. I want to better serve her (in my responses to her) and also myself.

    In this months "cycle," she calls sobbing at all hours begging for help and/or for me to call the police for her. Her main claims are that she is being stalked by a woman and she is in fear for her life. She says that the police are not serving her and they are out to get her. She says that all the police reports that she files "disappear" -- being stalked and the police not helping is a regular theme. She also rants and raves about a lot of other things ("did you know my IQ is off the charts! Yesterday I laid in the street so someone would run me over! I have a soulmate but he's weak! I have a fever! I fell down the stairs!") She has moments of coherence where it seems she's living in "my" reality but then quickly slips back into "her" reality. 

    I'd like to know if you have any advice (how do you respond to a family member in a crisis while maintaining your own boundaries for your health). Do you have any therapists you'd recommend? Are there other resources you suggest? I'm looking into NAMI/mental health support groups but also want to hear if others have successfully worked through similar issues. 

    You are definitely on the right path in pursuing help through NAMI.  A friend of mine found their family group incredibly supportive.  The best of luck to you and to your sister.

    I have adult children with bipolar diagnoses; it was very rough the first decade, but things have simmered down, and I'm able to enjoy my family.

    NAMI, the National Association for Mental Illness, has several chapters in the Bay Area. Some of their meetings are just for families and some for patients as well as families.

    Xavier Amador wrote a wonderful book. "I AM NOT SICK. I don''t need help: How to help someone with mental illness accept treatment," that I found very helpful in the hard times. His method of working with your mentally ill, and recalcitrant, family members starts with recognizing that you don't know what it is like to be in that person's mental world. Then, Listen to what they have to say; Empathize with their feelings; Agree with what you can recognize as truth among all the troubled language; and then, Partner with your family member in finding a way through. I'd highly recommend that book.

    That said, I'll add that I experienced a great deal of stress, and I still feel some of it. Bipolar disorder can be managed, but it doesn't have a cure. It's sad to watch great promise veer into another path than what I originally saw for my children. It's taken years for them to find a stable place, and for us to recognize that reality is not what we expected.

    I have found that therapy--for me--is essential in keeping my sanity an finding my own path through the chaos, while providing encouragement and support.

    Also, knowing others in a similar situation helps. In my case, the disease has a strongly genetic component, so I have a support system in my in-laws, the parents of my children's cousins who have also been diagnosed with bipolar disorder.

    Prayer has been very important to me. I couldn't carry this alone.

    My heart feels for you in your situation. Good luck, courage, and hope to you.

    My heart goes out to you and your sister. What you are both experiencing brought back so many painful memories.  The highs and lows do seem to get more and more extreme. From my understanding, its so hard to have them stay on meds because they feel really good when manic.
    My mother was diagnosed Bi-Polar 13 years ago and we have had many ups and downs, on meds off meds, etc.  Sounds like your sister is in the middle of a manic episode. During my mother's manic episodes, she would deny she was bi-polar or manic.  
    In short what I did:
    1 - obtained a therapist here in California (my mom lives in NYC) to help guide me through this journey and help set boundaries (something that doesn't come easy for me.) There was a period of time I had to block her calls because she was becoming so angry verbally abusive. If the phone calls are giving you anxiety (as they started to give me), don't answer.  I know that's so hard to do, but those phone calls are not helping you or her..... 

    Here is who I saw who helped me tremendously:   https://www.loriopal.com/

    2 - there was no way I could ever rationalize/reason with her when she was in a manic state.  This really took awhile to sink in for me and needed constant reminders from my therapist.

    3 - When she was in a manic episode, I had to wait for my mother to do something really "crazy" in order to call an ambulance/police and have them hospitalize her and get her back on meds. 

    4 -  Her last episode almost got her evicted and APS (Adult Protective Services) became involved.  As a result, she now has a psychiatrist, a therapist and APS, which all seem to be helping greatly.  Unfortunately, there is no way she would have agreed to any of these support systems during a manic episode.....

    Please feel free to reach out if you want to talk.

    I am so sorry to hear that you are going through this. I went through a similar situation with my aunt last year (in fact she has similar claims to your sister) I don't know that I have any great advice, but I can empathize. It was a very difficult time. I called everyone trying to get her help with no luck. My aunt refused to go to the doctor or take any medication. Finally one day, I called the police to ask for a wellness check and they ended up taking her to the hospital on a psychiatric hold. This changed everything for us. Once she was in the hospital they held her for two weeks and we were finally able to get a diagnosis and her on some medication. She was in a better state when she left, but still not great. The hospital would not allow her to go home alone (and we were unable to take her in), so she moved to a group home situation (even though she was young and very high functioning). This has been the best thing for her. She is given her meds three times a day and she is thriving in the structured environment. She is a completely different person from the one that was admitted to the psychiatric hospital. The plan is for her to stay here long term. Although she is fairly independent now, we worry that if she is on her own she's stop taking her meds and things would fall apart again.  I don't know your sister's financial situation, but if she is unable to work, there are resources. We were able to get my aunt psychiatric treatment through medicaid. They have a psychiatric team. Her doctor visits her every 6 weeks and her case worker visits her once a month....so she has a lot of people checking on her. We also had a lot of success working with a special needs attorney. 

    I wish you the best!

    I'm so sorry you are experiencing this distress with your sister. While I do not have first hand experience with this type of situation, a good friend of mine is the guardian for her long distance brother who was diagnosed as schizophrenic in his 20's (now in his early 60's. lives on the east coast). I've watched her travel a long, hard road, yet it has had moments of joy and always unwavering love. My friend has relied on her sisters and close friends for support. Her family is exceptionally close. Key for them has been managing their brother's health care, including psychiatric hospitalization and day programs when warranted, and finances. While she has not engaged with NAMI, I've heard very good things about it. 

    Mental illness of one effects the whole family. Take care of yourself, and know you are not alone.

    I feel for you. My mother was bipolar, and ... it was hell on wheels. In retrospect, I took better care of her than of me and that was a mistake. You will need to set boundaries and you will probably feel guilty no matter what you do or don't do. I'll just say, letting someone vent their illness on you won't make them feel better, but it will make you feel worse. So prioritize your own mental health, because this is one rocky road.

    The current understanding is that the disease progresses--every episode lays the foundation for even bigger mood swings. So each episode will be a little more severe. Appropriate medication is so far the only option that can stop or slow down the disease progression; she either agrees to take it or is compelled by law. I say this (I know it sounds very draconian) because the search for functional alternatives is agonizing and pointless.  She needs medication and a stable lifestyle to avoid more episodes, and she needs to be on board with that. You can't "make" her better.

    NAMI is probably the best place to start. They can help you with community and putting this in perspective. Perhaps they also can put you in touch with a chapter in the area where your sister lives--who can educate you on the actual resources and laws.

    Please remember that a person who is manic is impervious to reason and will both demand and reject help. It's very frustrating because they are genuinely in distress. You won't be able to do much of anything unless you learn the laws for the state she's in, and make contact with either someone she will listen to, or a law enforcement professional who will hospitalize her (against her will) and hopefully is medicated enough to stabilize. At that point, she is much more likely to be a willing and active participant in keeping herself on track.

    I wish you well.

    I feel for you.  It is so difficult to see a family member struggle!  And denial is so common - it is hard to for most people to admit they have a life-long mental illness.

    The NAMI support groups are very good - try going to a few different ones to find one that is a good fit for you. Also highly recommend their 12-week free "Family to Family" course for helping family members and others whose have loved ones with mental illness. Found the role-playing parts of it extremely helpful - it is so difficult to figure out how to talk with someone when they are manic, depressed or having a psychotic episode.

    Also, there is the Depression Bipolar Support Alliance, www.dbsalliance.org.  They have both in-person support groups and online support groups, as well as a wealth of resources - click on the "Support" tab on the top.  I think they may even have an online support group specifically for siblings.   Have been attending the SF group for about a year and find it a valuable source of support.

    Also self-care is extremely important - "put on your own oxygen mask first."  For me yoga helps me relax and turn-off worrying for a while.  Find what works for you.

    Sending you hope, strength and comfort!

    Sending you strength courage and hope!  I highly recommend NAMI (National Alliance for Mental Illness) and especially their 12-week free “Family to Family” course on how to cope with a family member with mental illness.  They also have excellent support groups, and you may want to go to several in order to find the best fit.   Another great organization is DBSA, Depression-Bipolar Support Alliance.  They have in-person support groups for family member in SF and San Mateo, but I do not think there are any in the East Bay yet.   Hower they do have online communities , and I believe there is one specially for siblings.  Their site has a wealth of information: https://www.dbsalliance.org/

  • Any recommendations for support group or resources for mom with this situation. I have Kaiser for healthcare which does include some great resources but not for this. This is a long standing issue which I pretty much have handled alone for 15 years but I feel frayed. I support my daughter (financially and otherwise) as much as I can but am feeling like I would like to talk to other parents in the same situation. As my daughter has aged she has become more demanding. 

    Any suggestions appreciated 

    Thank you in advance

    In Oakland but have support group will travel in East Bay

    Can you provide a bit more information on how old is your daughter now?  Does she live with you?  What type of mental illness?  If your child is an adult (over 21) then you do realize that you are not obligated to support her financially anymore?  Is her illness so bad that she cannot hold down a job?  Does she know what a budget is and could she stick with one if you put on such a thing?  Not  judging you.  Sounds like either you, your daughter or both of you could use some mental health care.  You also need support to ensure that you are not going down a rabbit hole.  

    Hello Missy, In my experience it takes working with heartbreak, shame, confusion, denial, etc  to come to the clarity you have about your child's mental challenges.  As a parent of a child-- now an adult -- with multiple challenges (mental illness being one) I know first hand.   Have you checked out the local NAMI, meetings are in church at Stannage @ Marin (Albany area)?  NAMI = National Alliance for Mental Illness ? They have a group designed specifically for parents (and/or loved ones) of teens and young adults.  From that group more connections/suggestions/referrals are possible.

    http://www.namieastbay.org/

      BTW: As I was very much about alternative remedies/help for health (and very much against allopathic medicine) I tried to address my son's problems with emphasis on diet, exercise, meditation, etc.  It didn't work.  In fact, he suffered greatly, I saw -- in hindsight.  No doubt it works for some people however, but my son isn't one of them.  ( I am shamed, occasionally, by well-meaning, yet ignorant people who feel they know better....but have never lived with a child like ours).   

       My prayers for you and your daughter in this journey. 

    You might try meeting with Family Sanity's group for parents of teens, which is held in a private home and facilitated by a therapist. I've only met the host, Lisa Scimens, once--but she was very welcoming. I have found just being in the presence of other parents who "get it" can be spirit-lifting if the group dynamic is carefully tended. Here is some info about Family Sanity's upcoming meeting in Oakland. All the best to you, Sarah

    Evening Group for Parents with Teens 
    Tu Feb. 27   7:30-9pm
     w/Amy Friedman, LCSW

    (suggested donation of $20)
    Please rsvp to lisascimens [at] gmail.com (lisascimens[at]gmail[dot]com)

    The Ann Martin Center in Emeryville has multiple resources:  https://www.annmartin.org/

    Also, look into Childrens Health Council (CHC), formerly Parents Education Network (PEN):  iinfo [at] chconline.org (info[at]chconline[dot]org)

    24-hour crisis lines: 855.278.4204. (Santa Clara) | 650.579.0350 (San Mateo)415.781.0500 (San Francisco) | 800.273.8255 or Text BAY to 741741 (Crisis TextLine)Be sure to try to attend EdRev 2018 on Sat.,April 21 at AT&T Park in SF

    I also recommend the NAMI meetings in Albany. http://www.namieastbay.org/   They meet on the third Tuesday of the month at 7:00pm in the church at 980 Stannage Avenue, Albany.

    There are also free 12-week "Family to Family" classes that are NAMI sponsored and offered periodically.

    I found these both to be very comforting and they actually helped me keep my sanity through a very difficult time with my son. 

    Stay strong and take things day by day.  It does get better eventually.

  • Hello,

    I am looking for a therapist for my sister-in-law (she is not on BPN and has asked for help finding a good match).

    She has been caring for my severely mentally ill brother for several years as his depression has sharply worsened. She has agreed it's necessary to see a therapist of her own because of caregiver burnout. She is a nurse during the day, then caring for my brother and their young child on evenings/weekends. I believe she could use someone with help in boundaries -- in helping her see where her obligations to her husband/son end and her obligations to herself & a happy life begin. This may include the painful exploration of conversation around marital separation.

    Is there a really good therapist anyone could recommend? This is a special person and a really, really difficult situation because of the mental illness context with my brother. Location in Oakland near Piedmont Ave/Macarthur Blvd. would be great. She has Kaiser but if someone really good is out of Kaiser network that is an option too.

    Thank you in advance,

    - Worried sister-in-law

    Sharon Gregory (on Ashby in Berkeley) has been a great help to me with issues like what you’re describing. 

    I recommend she contact NAMI (National Alliance for the Mentally Ill) and go to some of their support groups for family members.  She will be among other people who are walking the walk and struggling with these issues.  It is a special kind of problem.  Therapists tend to look at the pain of the individual with mental illness, and don't always realize how much agony family members go through as well, trying to find a balance between caring for others and for themselves.

    Good luck to you and yours. 
     

    I don't know if the location or insurance is a fit, but I highly recommend Susan Wansing -  susanwansing.com  510-326-5541. Her specialty is working with caregivers. She has definitely helped promote a better lifestyle for me.

    I would send you to Dr. Lisa Lancaster.  She is fantastic--especially dealing with illness/caregiving and boundaries.  She helped me a lot.  She is in Berkeley/Oakland right near College and Alcatraz.  510-841-2525

  • dear BPN parents 

    our last 2 years have been very hard. Our  happy, well- adjusted child who grew up in a loving & happy home began experiencing signs of pychosis at age 13. 

    Mental Illness runs in the family on both sides so we immediately sought treatment, found a psychologist, psychiatrist, etc.  

    We've been through DBT, CBT and I reluctantly hand my child a fist full of meds each night.

    We are in the "Prodromal" phase -- no psychotic break or hospitalization yet ... Hoping to avoid that! But still dealing with a suicidal child who has engaged in self harm who hears voices 24/7.

    I've reached out to NAMI & other orgs but really would like to talk w other parents who worry @ their children's life chances due to early onset psychotic features & what we can do to best help our child through this period and prepare for young adulthood 

    thank you

    Very worried mommy 

    This free weekly drop-in group in Berkeley offers a good perspective and good company. 

    http://www.hearingvoicesusa.org/hvn-usa-groups-list/details/1/76-east-b…

    Have you read the new research that indicates that people are actually hearing their own voice? 

    http://www.slate.com/articles/health_and_science/medical_examiner/2016/…

    There is also information that fish oil is preventative: 

    http://articles.mercola.com/sites/articles/archive/2015/09/03/omega-3-f…

    Hope this helps. 

    Hi, I'm a very worried mommy too. My 14 year old son has been in residential treatment for 6 months in Utah after 3 months of 14+ hospitalizations/placements for homicidal/suicidal depression/anxiety w/psychotic features  self-harm hears voices sees violent images etc. I've found a lot of support through Willows in the Wind monthly meetings in Oakland, but feeling like I also need some support on how to survive with a severely emotionally ill child, my own feelings of loss, guilt, frightened, sad, PTSD, how to support my other family members, what the future may look like, how to financially prepare for long term care, etc.

    He safe and alive at his current placement, but has not made any personal progress in learning how to cope with his symptoms. This also makes me very sad and not as hopeful about his future.

    I'm hoping there's some responses.    

    My best wishes to you through this struggle.

    Have you heard of PREP? Its an Alameda County funded program for kids who are exactly in this prodromal stage. My son had his first psychotic episode at age 17, probably was having other symptoms earlier that we mistook for behavioral issues. PREP, based in Oakland, took him in as a client. They have therapists, support groups and medical staff who worked with him and helped him manage his symptoms better. The counselor/ therapist, a young friendly student intern, used to come home to Fremont weekly to meet my son and often took him around to the park. Unfortunately, our son had co occuring conditions that required hospitalizations and we had to pull him out of Prep. But for time he was with prep, we felt very supported.

    You can google them up for the contact info. Best Wishes!!

    Hang in there. You are a great Mom and are doing everything right. 

    The PREP program in SF has a lot of experience with early psychosis. They offer a lot of what you are already doing but may be another good resource. 

    http://prepwellness.org/why-prep-is-different/

    good luck! 

    Hi

    idk if this is appropriate and apologize if not. First Hope in (or near) Concord.   I wish you all the best. 

Archived Q&A and Reviews


Questions Related Pages

Support Group for families of depressive spouses

Oct 2011

I am looking for a local support group in the East Bay...particularly Oakland or Berkeley area. I have been to a good one in SF, but it is too far to travel on a regular basis. I am looking to find a group, or even start one myself if there are others on this list who need support as well. If you have a husband or wife who has depression, you know what I am going through. You need a strong support system around you to survive. I haven't been able to find one specific to wives of depressive husbands. Also, one for families with children and one parent who is depressive. trying to find others in the same situation


here's NAMI's website with a list of east bay support groups for families affected by depression/mental illness: www.nami-alamedacounty.org/Family_Support_Groups.html


Support group for parents of ED/LD teen

June 2011

Our 13-year-old son has a alphabet soup of afflictions (ADHD, bipolar, OCD, ODD, Tourette syndrome and anxiety disorder). When he was little we read scores of books and attended support groups that helped us develop good techniques for working with him, all of this when we lived outside the Bay Area. The older he gets the more apparent it seems that we need new skills. Can anybody in this dialed-in network suggest either helpful literature or support groups? Many thanks. Anon


I'd be surprised if you aren't already familiar with NAMI (National Alliance on Mental Illness), but, just in case you aren't, here are links to the national website as well as the East Bay website. http://www.nami.org/ http://www.nami.org/MSTemplate.cfm?Site=NAMI_East_Bay . Best wishes


Support group for depressives and or their spouses

April 2011

I have a 4 month old daughter. My husband has a major, long-term, ''treatment-resistant'' depression. He's tried every medication (the list is something like 30 drugs and combinations) including some MAOI's, one of which helped land him in the ER when I was 9 months pregnant. He has heard from everyone that he should exercise, but won't/isn't able to actually do something about it. Ditto with dietary changes, such as cutting down on the wine, coffee, etc. These things contribute to his being overweight, having sleep problems, snoring. He also suffers from migraines. He's been in therapy with his Psychiatrist but he doesn't seem to think it has done anything to help. Bottom line is he's depressed. Often to the point where he is in bed most of the day. I'm looking for some sort of support group for myself. Does anyone know of such a thing in the Bay Area? coping


Check with the National Alliance For Mental Health. They have s support group for depressives in San Francisco. According to the link there are also affiliates in Oakland and Albany. http://www.nami.org/template.cfm?section=your_local_nami What is positive about NAMI is that they are a group that encourages both medical and social management of mental illness. It also helps family members reduce their feelings of isolation, and advocates for better medical care and the governmental financial resources necessary to provide that care. anon

Editor note: more responses to this question are here: Husband's debilitating depression


Support groups for people with depressed siblings?

Aug 2010

Hello all, I am wondering if there are any support groups that meet face-to-face for people with severely depressed siblings or other family members. I've found plenty of online support groups but I'd really like to talk to people in person. Therapy is getting pretty darn expensive and I really want to meet other people who can relate to my situation. My little brother (now 25) has been horrifically depressed since he was about 8 years old; we've exhausted all our emotional, financial, and mental resources trying to help him, and now I just really need help myself. Thanks Katie


Hi, There is a website findgrouptherapy.com that lists many of the therapy and support groups in the bay area. Take a look and see if there is a group that appeals to you and talk to the group leader. I run a women's group in Lafayette and would be happy to talk to you about other groups I know of. Marie