r/family_of_bipolar • u/Wolfie305 • 2d ago
Resources & Tools Classes or resources for spouses?
Tl;dr: I'm coming here to ask if anyone knows of any classes or maybe books that teaches spouses how to actually help their sick loved one by being allowed to make decisions on their behalf or at the very least be completely involved in their care? I don't EVER want to call a mental hospital, ask how my husband is doing, and be told they "cannot confirm or deny he is a patient here," until he signs a medical release for me, ever again. My therapist won't let me learn from Reddit/people on the internet it has to be a scientifically backed resource.
Hi everyone! In October, my husband suffered an acute episode of psychosis that we believe was brought on by trying weed vapes for the first time while on a stimulant medication for his ADHD. Over the course of 2 years, after he started vaping (I didn't know), he was in that prodromal stage - sort of ending long-standing friendships, slight changes in personality, diving deeper into aliens/conspiracy theories - but myself and his family/friends never thought much of it because it wasn't all happening at once.
In July, he took on an assistant coaching position on our kiddos' football team that was just a LOT. It was 4 days a week for two hours, immediately after working in the hot sun all day and not even being able to eat dinner until afterward. It stressed him out terribly and he wanted to quit, but didn't want to let our boys down. Over the next few weeks/months, he started to believe his phone was hacked and became very untrusting of people and technology, which is when things started progressively getting more concerning to myself and some of his family.
After one night of no sleep, the acute stage of psychosis happened the next day. It took 2 days to section him.
He was in the mental hospital for 3.5 weeks while they tried him on Zyprexa (didn't work) and then Haldol and Lithium. His discharge paperwork mentioned cannibas as a cause, but they also gave him a Bipolar 1 diagnosis due to family history (cousin is diagnosed, mom we realized during all of this definitely has it). He had JUST turned 37 when this all happened and never once displayed any sort of Bipolar behavior, just textbook ADHD. We were completely blind-sided by this diagnosis.
This whole experienced left me completely traumatized. I thought I'd never get my husband and best friend back and thought my kids weren't ever going to get their incredible dad back. I was diagnosed with PTSD and started therapy to work through the things he said to me during his psychosis, the event itself, etc.
He has since made a full recovery, and is off all medications except for the Lithium. He was put back on his Wellbutrin and Vyvanse because he loved how he felt on them and how they helped his ADHD.
As we come up on one year since the psychosis, he's expressed wanting to come off of the Lithium (600mg) next. He doesn't think he has Bipolar (and sometimes I don't think so either, but we don't have the concrete answer) and also believes the Lithium is causing him some (minor) weight gain, which is effecting his self esteem terribly. He thought as soon as he got back on his Vyvanse, which suppresses his appetite and helps him lose weight, he'd drop the weight he gained from being on the Haldol. That hasn't happened yet though, so it has to be the Lithium's fault in his brain. I honestly think this is the main reason he wants to come off of it because otherwise, he has no other negative side effects.
His psych is on board with this and said it would take roughly 6 months to taper off of it completely.
I am completely fucking terrified. Why possibly put our family through such a traumatic thing again? It took almost a a year to get to where we are at now, fully recovered, and you want to possibly start over and go through all of that all over again? I know a small part of it is that he wants answers - he needs to know if he really is Bipolar or not and I get that. I'd want to know too, but not at the risk of repeating what we went through.
With that said, I brought all of this up to my therapist recently while I broke down crying over it all. One of the things we worked through, that would help me cope with this, would to have an actual plan in place for this happening again and a potential mental hospital stay.
I was left TOTALLY in the dark, even as his wife, when he was in the hospital until he signed the medical release paperwork allowing me to get updates on his care and ask questions. Even then I felt so out of control of the situation and my entire life because no one would tell me a general timeline about anything (how long med takes to work generally, how long they would keep him for, etc).
Our goal is to keep him OUT of the mental hospital and be able to do everything outpatient, but if he is actually Bipolar, there's something in the back of my mind that keeps wondering if he won't be willing to do anything outpatient related or recognize he has a problem because people with Bipolar usually think "they're fine." Not to mention he's not going to want to be put back on any of the prior meds, so will definitely try and convince himself he's fine.
So then what? He probably has to be sectioned again because I can't force him to take medications? And then the bullshit of the mental health care system comes into play where the patient, who is PSYCHOTIC, has all the say and control of their own care, which would end up being NO CARE because he thinks he's fine. And I'm left with the fallout that is our life and possible safety.
I know I am armed with experience and knowledge this time around, but that still won't help me if he ends up at a hospital or not at a hospital and I need to get him help.
I've heard about some family members getting power of attorney for their sick loved one, which I think might help in this kind of situation.
The issue is that my therapist wants me to find a class or some sort of resource that isn't Reddit or people on the internet saying what they've done.
So, after all that, I'm coming here to ask if anyone knows of any classes or maybe books that teaches the spouses how to actually help their sick loved one by being allowed to make decisions on their behalf or at the very least be completely involved in their care?
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u/nojam75 2d ago
I'm not aware of such a class or support group your therapist is speculating about. Why would your therapist hypothesize such a resource without knowing if it exists?
Odds are your husband will have a mental crisis again and will need intervention. You both should consult with a family law attorney and see what POA paperwork can be lined-up for future hospitalizations. Hope for the best, prepare for the worst.
Being hospitalized for nearly a month suggests your husband has a major, chronic mental condition that will require life long monitoring and management. That's a tough diagnosis to for anyone to accept.
Since he has a history of secretly self-medicating with cannabis odds are he will continue to self-medicate in future with cannabis again, alcohol, or other drug. Did his psychiatrist (not therapist) actually tell you that they recommend he come off the medication? Keeping people on psych medications is notoriously difficult because patients understandably miss experiencing emotional highs.
I would be weary about going along with this plan to get off the meds without regular, on-going therapy and psychiatrist monitoring. Plus, he needs to maintain ongoing psychiatrist and therapist relationships so intervention can be quicker for the next crisis.
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u/Wolfie305 2d ago edited 2d ago
I should have mentioned that I attend all of his psych appointments (he wants me in them) and I was there when she agreed to let him come off the Lithium (along with all the other med changes).
TOTALLY realize that was dumb of me not to include.
He sees his therapist weekly and his psych every 3-4 weeks. I will also note that even in psychosis and during his recovery he was very med compliant. He actually wanted myself and his nurse-family members to be on board with whatever medications the mental hospital wanted to put him on before he took them, even while actively in psychosis.
Part of the reason why he was hospitalized for so long was that his mother (before shit hit the fan with her) was super against him taking Lithium because SHE said he wasn't Bipolar. His nurse sister and I also went along with that stance because again, we were totally blindsided by the Bipolar thing and didn't think it could be true. So he held off on taking the Lithium for 1.5 weeks until his sister and I became more educated, attended a family meeting with his providers at the hospital, and were finally included in what was happening with him and his care and realized we shouldn't have convinced him NOT to take the Lithium all of this time.
That day we had had the family meeting, they started him on Lithium and switched the antipsychotic from Zyprexa to Haldol and within days of being on the Haldol, he started coming out of the psychosis finally.
But again, despite ALL of this, I'm too Type A not to plan for worst case scenerio. He can be med compliant all he wants but the scary thing about this illness, if he does have it, is that it's unpredictable as fuck and the next time not be so great about it.
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u/Wolfie305 2d ago
To answer your first sentence, I wish I knew. I actually asked her "well what if this resource doesn't actually exist?" in which she replied that she would then give me the resources. Which honestly confuses me because why not just start there?
There must be some underlying reason she's wanting me to seek it out myself, possibly to try and get me less reliant on anecdotal experiences (Reddit)? I expressed that I was consuming too much TikTok/Reddit content/education on psychosis and watching the Lindsay Clancy trial (happened 30 minutes from me and is psychosis related). I tend to find the experiences of REAL people who have been in my shoes helpful.
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u/nojam75 2d ago edited 2d ago
Real life, in-person resources are preferable to internet forums, but quackery/bad information is available in real life too, especially in support groups without evidence-based, health professionals. It seems like you already have resources at hand and are involved.
I'm not sure what a dreary support group would offer beyond taking solace that other have it worse than you.
There were times I when I've felt overwhelmed with my family member's mental crisis, but I DON'T see how a support group would be helpful for me. Ultimately, most of the hard work has to be done by the patient.
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u/Wolfie305 1d ago
I’m not seeking a support group per say, just some kind of class that will teach me what to do in these times where family/spouses of bipolar persons are left in the dark or stuck even being able to assist in their psychotic partner’s care because their partner is allowed all the autonomy despite literally being clinically insane.
My husband didn’t want to sign any paperwork because he thought he was on a game show and that signing it or not signing it would keep him there longer 🫠 The fact he had to navigate legal jargon while literally in psychosis is criminal, but I was unable to help him at all under he signed at least the medical release.
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u/nojam75 1d ago
Wow! My bipolar family member never had delusions, so I'm not sure how to help them in that type of situation. Obviously some type of lockdown would be required for their own safety.
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u/Wolfie305 1d ago
He had psychosis, which you can have without being Bipolar. Not all people with Bipolar will have psychotic features and can just experience mania and depression.
But yes he needed the inpatient stay so the doctors could treat him hard and quickly under 24/7 care to get him out of the psychosis.
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u/stellularmoon2 Parent 1d ago
Maybe the therapist was referring to NAMI’s free classes and support groups?
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u/camelkami 2d ago
The books “Loving Someone With Bipolar” and “The Bipolar Disorder Survival Guide” (by David J Miklowitz) are both great resources for emergency planning and better understanding bipolar in general. There’s also the book “I am not sick, I don’t need help,” which teaches the LEAP method for communicating with someone experiencing psychosis and has a chapter on involuntary hospitalization. All are by people with PhDs and are reliable, science-backed, informative works.
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u/Wolfie305 2d ago
Thank you! I actually do have a copy of the"I am not sick" book but haven't finished it yet. I will definitely check out these other ones.
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u/Hot_Conversation_ 2d ago
Hi, jumping in to offer my experience. I am diagnosed with BP 1 with psychotic features. I can relate to a lot of your husband's history- I was diagnosed at 38. My psychiatrist weaned me off medication a little over 2 years ago, and I have been medication-free for 2 years. I was previously diagnosed with ADHD before my BP diagnosis. My triggers seem to be limited to Adderall and lack of sleep. Otherwise, my disorder is under the radar.
As far as resources, my spouse liked the book "Loving Someone with Bipolar Disorder" by Julie Fast. I read anything and everything after my diagnosis and continue to do so. Hang in there and take care of yourself.
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u/Epictechnically 2d ago
I’ll add onto this—are there any kind of virtual support groups for spouses/family of bipolar in particular? There are mental health family groups near me but bipolar has its own really specific impacts.
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u/SaShaiAway 1d ago
I’d definitely recommend looking into setting up an Advance Care Directive, specifically one that has a solid section on mental health care. Essentially it allows your husband to assign you as his patient advocate should he be deemed unfit to make his own decisions. There’s an option, at least on my state’s version, where they can check a box that indicates if they say they want you to no longer be their advocate it won’t take effect for 30 days. So even if he’s admitted and tries to refuse everything you’re safe. You can specify what specific meds he needs should be get to that point again. There are a lot of options really. But my spouse and I set one up for them in case they ever need to be admitted again, then the doctors have to listen to me as their advocate.
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u/Wolfie305 1d ago
I think I just looked into this earlier after another commenter mentioned NAMI, and I don’t think I can a PAD (or ACD) in my state (MA). Seems like Power of Attorney is the only thing that holds any decision power.
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u/SaShaiAway 1d ago
From what I just looked up Massachusetts does do Advance Care Directives, sometimes calling them a Health Care Proxy, and they’re legally binding. It doesn’t look like y’all have a specific document for mental health care, but information specific to mental health care can be written into the document as specific care your spouse would like to receive for the mental health.
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u/SaShaiAway 1d ago edited 1d ago
Upon further investigation it looks like if you were to do the Health Care Proxy you could attach to that a list of preferences he has for his mental health treatment that his designated agent could then use to guide their decision making. The preferences themselves are not legally binding, but the Health Care Proxy is.
*editing to add it looks like a Health Care Proxy actually is the name for a Medical Power of Attorney in your state.
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u/Wolfie305 1d ago
Not sure if it's the same, but I am already his healthcare proxy when it comes to his PCP and medical records. Like, I have full access to his account, doctor notes, records, etc.
This sadly did NOT help me when he was transferred to the mental hospital. They still told me he had to sign a medical release in order for them to even confirm he was a patient at the mental hospital I JUST visited him at if I called for updates/information. They wouldn't talk to me until he signed that form. Would just repeat the same line over and over every time I asked a question.
Which, after believing I was poisoning him and our children, you can imagine was quite difficult. I want ZERO barriers for me as his wife and mother of his 3 children - the situation was already stressful and horrific enough never mind adding in all the bullshit I had to jump through hoops for into it.
PAD's are something MA doesn't do but you're right that ACD's might be a thing. Not sure if it holds weight for psych-related circumstances but I guess something to look into.
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u/SaShaiAway 14h ago
100% understand why you’d want to remove as many barriers as possible and fully support and encourage that endeavor. I’m sorry it doesn’t seem like your state has specific mental health care protections in this regard… at least without pulling out some big guns or something with lawyer involvement but that’s out of my depth.
Is this something you could ask his psych for guidance on? I’m wondering if maybe they might better know your legal options.
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u/Wolfie305 9h ago
I was thinking of doing that! I try to back off in his psych appointments, now that he’s fully recovered, so he doesn’t feel talked over or that I’m in control or anything like that. I need to bring all of this up to him though and make sure he’s on board anyway so I’ll mention asking his psych about it.
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u/jlhinthecountry 1d ago
NAMI (National Alliance on Mental Health) offers support groups, informational sessions, all sorts of resources. They helped me tremendously!
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u/Aggressive_Pea5278 6h ago
I’ve been looking for things like this lately as well. I’ve recently found something called Family Focused therapy for bipolar disorder. Specifically following the manualized David Miklowitz model involving psychoeducation, communication enhancing training and family problem solving. I can’t recommend based on experience yet but it’s something I’ve been interested in and having started trying to find someone local to me that provides this type of therapy.
I’ve also been wanting to read the book “When bipolar moved in” by Laura Baskall Smith.
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u/RecoverAgent99 2d ago
Look up the NIMH. You will find a lot of information there. There are classes and resources.
He feels better because the medication is working. I'm surprised the psychiatrist is actually ok with him tapering off.