Top Three Reasons You Should Be Involved in Your Spouse’s Psychiatric Care

I never accompany my husband to dentist appointments or routine physicals, but I go to every appointment he has with his psychiatrist.

This wasn’t always the case. When he first came out of the hospital after his initial breakdown, he asked me not to come into the psychiatrist’s office with him. My presence would make him nervous, he said. It would make it difficult for him to be open and honest with the doctor about what was going on.

With some misgivings, I agreed to let him field the appointment by himself. The doctors from the hospital had been terrible about communicating with me, but I assumed that his private psychiatrist would have a better bedside manner toward me, John’s wife.

I was wrong. Although I asked to visit with Dr. Black for a few minutes after John had seen her, she told us that she didn’t have time. When I called her in between John’s appointments to let her know that his psychotic symptoms were resurfacing, she never called me back. She also had the nerve, when I finally did speak with her during my husband’s next appointment, to tell John (and me) that I was part of the problem, and that he needed to set boundaries around his interactions with me.

Her refusal to give my opinion any weight led to misdiagnosis of John’s illness (she thought he had anxiety and depression, when in reality he was suffering from a manic episode with psychotic features), and a second stint in the hospital for him.

Although HIPAA privacy laws can sometimes make it difficult to get involved in a loved one’s psychiatric care, there are three reasons I believe you should always fight to be an active member of your spouse’s mental healthcare team.

First, you know your spouse better than anyone, and can offer valuable insight into his/her behavior and mood. This is a point that Dr. Black completely overlooked. After talking to my husband for 30 minutes, she thought she had a better handle on who he was than I did. She didn’t, and John paid the price.

Denial and anosognosia (lack of insight regarding your illness) are two hallmarks of mental disorders. Expecting that people who suffer from psychotic illnesses will be able to self-report their symptoms is naïve, particularly during a first episode.

In addition, bipolar disorder can be hard to diagnose when a psychiatrist is only presented with the patient’s perspective. It’s not uncommon for people with bipolar to focus much more on their depressive symptoms than their manic or hypomanic ones. People tend to feel good when they’re manic, bad when they’re depressed. They seek help for the depressive symptoms without thinking the manic ones are significant enough to mention. This can lead to misdiagnosis and the prescription of antidepressants, which can trigger or exacerbate mania.

When psychiatrists solicit the spouse’s opinion, they gain additional information about the patient’s symptoms that the patient may not have seen. This leads to more accurate diagnosis and a better long-term outlook for your spouse.

Second, you send your spouse the message that you’re in this together, and that you’re there for him/her no matter what. Dealing with mental illness is scary, particularly when you’re first diagnosed. There’s a lot of stigma to contend with, a lot of uncertainty, and a lot of self-doubt.

My husband felt like his mind had betrayed him, and his self-confidence was shot. Frankly, I think this blow to a person’s self-esteem is one reason why so many people deny that anything’s wrong, even after years of symptoms and suffering. It’s too hard to admit that you’ve “gone crazy.” It’s too hard to admit that your thoughts and feelings aren’t always under your control.

Once my husband’s paranoia had passed, it was comforting for him to know that he could trust me, even when he wasn’t sure he could trust himself. I’d seen the worst and I was still right there beside him, his partner in trying to figure this recovery thing out.

(The Breaking Bipolar blog has a couple of good posts on how to send the message that you’re there for a loved one no matter what. Holding onto Hope in Bipolar Treatment points out the importance of having someone who believes in you when you can’t quite believe in yourself, and Supporting the Mentally Ill: Best Things to Say includes a great list of supportive sentiments to share.)

Third, you gain peace of mind. One of the worst parts of my husband’s initial breakdown was having no clue what was going on. Was he schizophrenic, or was it just stress? Did he need to be hospitalized, or did he just need to sleep?

Then, of course, there was the fact that the hospital doctors wouldn’t meet with family members. Hell, they’d hardly even return my calls.

I was married to this man, my life was intertwined with his, and yet nobody thought it was important to update me on how he was doing. But mental illness doesn’t happen in a vacuum. My husband wasn’t the only one affected by his breakdown. It threw my life off the rails as well.

After John’s second hospitalization, I insisted on being present during his psychiatric appointments with his new doctor (we did not go back to Dr. Black). It wasn’t that I didn’t trust him; I didn’t trust his illness.

I’d seen him paranoid. I’d seen him delusional. His illness hadn’t given him malicious intentions, but it had tricked him into thinking people—including me—were out to get him. It had tricked him into thinking things that were blatantly false were true.

I wasn’t sure, at first, whether he would tell me the truth about what the doctor was saying. I wanted to be there so that I could hear everything straight from the horse’s mouth.

Now, two years later, it’s not so much about making sure I have the right information, it’s more about ensuring I have all the information. When I accompany John to his psychiatric appointments, I never have to wonder if I have all the information necessary to make good decisions. I know exactly what John knows, and that lets me sleep easy at night.

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14 Responses to Top Three Reasons You Should Be Involved in Your Spouse’s Psychiatric Care

  1. Chris Wells says:

    This is an amazing post. I hardly know where to start. It makes so much sense to be involved in one’s spouse’s care. As the spouse with bipolar disorder in my relationship, I thought about this issue after reading your post.

    I’ve always allowed people to be involved in my psychiatric care to some extent. First my mom, then my best friend, and eventually my husband. In different places and different situations.

    My mom needed to hear that I had bipolar disorder, and that it was serious. And that it wasn’t her fault. She didn’t come to many appointments with me, but she was there during my hospitalizations, knew my doctor, etc. and had my permission to talk to them.

    In my mid 20s I used to have my best friend come into my sessions sometimes. It was different, because I needed her to hear what I was telling him and what he said to me. I was almost always stoned or high on something. It wasn’t ideal in any way, but it made things work a little better.

    Jason never came to an appointment with my psychiatrist until we’d been together 6 years and I had postpartum depression. He kept saying I wasn’t myself, that it wasn’t me. But it WAS me. It was ME, off my meds, nearly psychotic. And at the appointment I brought him in, with 6 week old Jack, so that he could hear everything. The doctor spent 45 minutes with us. We were in a strange city, I’d never met her, just got the referral from our insurance company. She was amazing. She patiently explained what was happening to me and Jason asked questions, it’s such a great memory from that time of darkness. To know he believed her because she was a doctor was both a relief and also kind of pissed me off. :)

    Jason has met my therapist here, whom I’ve been seeing for 5 years. He hasn’t met my current meds doctor. But if he wanted to, or felt he needed to, he would be welcome to be a part of my care. Luckily (I guess?) I’ve been dealing with bipolar disorder for so long that I’m good at knowing myself and my moods, and when things are getting scary. I actively seek out help when things get bad. I won’t let my life fall apart ever again.

    I agree with you on this so much. I’m grateful you have the peace of mind of having the connection and the information. I wish more couples would openly talk about this and involve each other.

    Okay, that was a long comment! Thanks again!!

  2. Hi Chris,

    Thanks so much for sharing your perspective! It’s awesome that you’ve always been so open to having other people participate in your care. From what I’ve heard, that’s not always the case, particularly when the person suffering from the illness doesn’t want to acknowledge that there’s anything wrong.

    I don’t know that I’ll always go to John’s appointments with him, but having the option is comforting, and knowing that I have permission to speak with the doctor is key.

    John’s breakdown really improved our ability to communicate with each other. Although I’m sorry he had to go through such a horrible experience, I’m grateful that we were able to use it to strengthen our relationship in the end.

    Best,

    Heather

  3. Shrinkwrap says:

    As a psychiatrist I couldnt agree with you more. For many assorted reasons, many in our field have lost their doctoring skills and hide behind HIPAA rules, liability and the “blank slate” anonymity to cover their deficits. Your post should be required reading for all families AND providers, including non MD mental health clinicians who are prone to the same. I know I will direct patients to it.

  4. [...] The Top Three Reasons You Should Be Involved In Your Spouse’s Psychiatric Care by Heather Whistler. [...]

  5. Nell Blizzard says:

    My husband found this article today and shared it with me. So glad he did. You are absolutely right about the spouse needing to be involved in the care and treatment. I am the sufferer and my husband is the supporter. I could not get through this without him. God has given me many tools to deal with my GAD and panic attacks – including a service dog. But my husband is the be all and end all. I do not see a psychiatrist because the one I started out with had me on at least 12 different drugs. Not one of them helped me and several left me with side effects that I live with years after I stopped taking them. The truly frustrating part is that I was honest with him from day one and told him everything I was feeling and thinking. Grr! It was a nurse practitioner at our pcp that was able to get me on the medicine that works for me… on her SECOND try. My husband and I talk about everything that I feel and think so that I’m not just endlessly spinning out of control and we keep my pcp in the loop. I thank God for my husband!!!
    I’m going to share this article with others. :)

  6. S.McGuire says:

    I needed to read this post so desperately today. My husband has a history of panic attacks and anxiety. He has been on the same medication for years. He has also always had a temper. Over the last few years, 3 months specifically, he has developed symptoms of bipolar disorder including periods of rage. I on the receiving end of the rage. I planned to go with him to the psychiatric RN he had been seeing. He called me at work that day and told me they called to cancel the appointment because of an emergency. He said the secretary did not reschedule because she did not have the therapists schedule at that time. This sounded strange to me so I checked our caller ID. There was to call from that office. I asked him if he canceled it and he said no but then he started talking about how he really did not like her. He said she did not listen to him. I knew he had a hard time making appointments with her so I told him I would try to find a psychiatrist. I made the appointment telling the receptionist his history and that he was having new and different symptoms. My husband started getting uptight about the appointment. I called the office the previous day and told the receptionist I would be coming with him to the appointment and would I be able to speak to the dr. She said I could as long as my husband agreed. The morning of the appointment my husband told me I better not say anything to make him walk out of the doctors office. “Threat” He has had some extreme behaviors…pouring gas on the kitchen floor and threatening to burn the house down, threatening to shoot my horses and dogs, throwing things at me, getting out his gun and talking about how it will all be over soon. Not to mention the horrible things he says to me. I knew he was not going to tell the dr about this. When the doctor came to the waiting room and called his name we both stood up and my husband asked if I could go back with him. The doctor asked who I was. My husband told him I was his wife. The dr then said if I had questions he would talk to me separately. That was fine. I had to questions but I had information for him. When my husband came out he literally blocked my way to the door and told me the dr was really busy. I said “but I took off work today so that I could talk to him”. My husband got angry and walked out of the office. I had come prepared. I had typed up a list of his extreme behaviors and put it in an envelope. I wrote “Please give this to the doctor” on the envelope and handed it to the receptionist. When I met my husband at the car he was furious, he backed up over the curb and told me I made a scene. Anyway, I want to be involved but he will not allow it. I can’t believe a professional psychiatrist would refuse to listen to the spouse. According to my husband the dr upped his dosage of zoloft and added buspar. He took buspar years ago for panic attacks and it did nothing. I can’t find any information that indicates buspar or zoloft would be a proper treatment for the symptoms/behaviors I am seeing and living with every day. I have told my mother and my best friend that if he kills me to sue that dr. I don’t know what else to do.

    • I am so sorry that you are in this awful situation. Please stay safe. If your husband is violent, you need to leave. If he is using the threat of violence to manipulate you into staying, you need to leave. If he will not let you talk to the doctor about his violent behavior, you need to leave. I know it is a horrible thing to do, but you need to take care of yourself first. Please do not wait until he hurts you. You are in my thoughts and prayers.

    • Nell Blizzard says:

      From what you describe, I’d say you have a very short time before it’s all over if things don’t change now. We just buried my dad a few months ago because he committed suicide. He didn’t murder my mother first like we feared he might, but then I don’t think he did the things you say your husband is doing. A very large part of what brought the end was that Dad was on the wrong medicine (Effexor XR) and then in January of this year his psychiatrist added Abilify to enhance it. HUGE mistake! But I don’t know if the doctor even knew the Effexor was wrong for Dad. I told my mother at least 5 years ago that it was the wrong med and she should talk to the doctor and insist they find a better med because Dad would just suffer in silence even if he realized the med was wrong for him. She looked at me and said, “He is functioning. I’m not going to say anything.” Your husband is more blessed than he will ever know to have a wife who is so interested in helping him get better – not get dead. In my humble opinion (because of my dad and because I, like your husband, have anxiety and panic), you should get a doctor who is not a psychiatrist to take your husband’s case. When I started having panic attacks over a decade ago, I went to Dad’s psychiatrist. Several years later and after trying almost a dozen different meds, I was no better. Thankfully, I got married at that time and moved to Florida. It was my husband’s nurse practioner who found the right med for me. She did it by listening to my story, determining that the psychiatrist had kept me in one class of meds, and it was the second med she had me try that I have been taking now for 8 years. She also determined that I need a very low dose because I am so sensitive to meds. On behalf of your husband even though he would tell you not to, please start yelling FIRE and don’t stop until someone listens. He needs you to be his advocate. This illness is a nightmare and I wouldn’t wish it on my worst enemy. I’m so glad I married a man who loves me so much that he is my advocate, researcher, support, cheerleader, whatever I need at the exact time I need it. And most of all, if you don’t serve God, seek Him and let Him into your life. A very large part of this illness is spiritual and the meds cannot begin to touch that. With much prayer on your behalf, Nell Blizzard. (you can find me on Facebook at https://www.facebook.com/nell.blizzard)

  7. vkennedyart says:

    I had almost given up that I would find the answer to my question on the internet. I have been so frustrated over the past 11 months trying to seek help for my husband. There are alot of similarities in my situation with yours and some of the others who have replied to your story. My husband has had issues his whole life. We met in high school. Got married at 18 yrs of age and had 3 children by 23 yrs of age. We were very much in love, but it didn’t take long for me to realize there was something just not right. He has never been able to hold a job long. The longest time on any job has been 2 years. He was a wonderful father to our children in everyway except as a provider, which a man needs to provide. His compation for his children kept me with him. Now we have 9 beautiful grandchildren that we both cherish together. He had a very disfunctional child hood, starting with his birth. His mother told him that she had taken pills that were supose to abort him because she already had 3 children and didn’t want another one. He was about 25 yrs old when she told him this. There was to many unbelivable events that took place in his life, but he didn’t see that they had caused him such deep emotional problems. Everyone watched as he sunk deeper into depression and even though I tried to get him to see a doctor about it he refused. He felt that would make him less of a man. We are now 50 yrs old and he is agreeing to get help. . I had contemplated having him Baker Acted many times during the past 2 yrs, but was concerned he would freak out and run if they came to get him. I had heard many times how mentally ill people have been shot and killed instead of helped. He has all sorts of issues. Sever axeity, paranoia, manic with sever ups and downs. He has been having some delusional episodes over the past 5 yrears where he feels as though he is being attacked. He can’t go to theaters, resuartants or enclosed places without sever attacks or becoming loud and making a scene. If he is, say at a Tball game in the open around people he does better, but still is over come with anxiety and starts talking excessivly becoming loud acting unapproiatly causeing scenes or offending someone with his strong opinions on politics etc and asked to leave. We have no insurance and for a year I have been trying to get into a free clinic or find a Phychiatrist that will see him probono. The major mental episodes other than depression and lack of motivation ect did not begin until the last 5 yrs. Getting to the point, I finally got us both into a clinic connected with a hospital. Being afraid he may change his mind about seeking help I made an appointment and never in a million years thought I would be denied what I feel is my right as his wife to go in with him. He had no objection to me being there, but the nurse said the doctor doesn’t allow anyone but the patient in the room. I know he will not relay everything correctly or rasionally. Later I called and explained the importance of being there and how my husband will not relay the information obtained correctly nor would he explain all his issues. I felt my knowledge was very nessasary and important and told them he needs a referell to a phychiatrist as soon as possiable. They did give him meds that did not help at all and said they needed to wait and see after a month. I called again and made another appointment seeking a referll but again they would not allow me in. They said the doctor would talk to me after his appointment, but then said he didn’t have anytime. They upped his meds and even though I had made several calls expressing my concerns and explaning his syptoms they sent him away with no referel. That was today, and now I am so discouraged, but not willing to give up. It really encouraged me to find someone who has been through this. I can’t go to another doctor because we have no income. We are living with our son and his children whom I have been keeping while he works for the past 5 yrs. At any moment my husband may snap and refuse to get help. They seem to think I am just an over powering wife or something just being nosey and thinking I can diagnois mental disorders. Well at this point after all my research I think I am doing a better job than these physicians. I believe he has several things going on, phycotic bipolar or scytephrenia, post traumatic syndrom along with the other issues I’ve mentioned. If anything happens because of their lack of true concern or refusal to do what I think should be automatic they will be to blame. I am afraid my husband is gona make someone mad or because of his increasing delussions of being attacked he will end up in jail or dead. I am not giving up. I found on my own today that I can have him sign a disclosure form allowing me access to his care. I shouldn’t have to have him Baker Acted if he is willing to get help. I will write a letter to the top dogs, then go as far as the White House if I have too.

    • I’m sorry you’re going through this, but really happy that your husband has you as his advocate! Definitely ask your husband to sign the form that allows the doctors to communicate with you regarding his treatment. This is something John does for me every time he sees a new doctor. Also, since you don’t have health insurance, it might be worthwhile to get connected with a group like NAMI, which can help you better navigate the resources available to you and your husband from the state. I’m glad you’re not giving up. You know your husband a lot better than the doctors do, so keep listening to your gut and hang in there!

  8. TreTre says:

    Hi everyone, i am happy for all tnose who are allowed to be involved in their husband’s treatment. My husband suffers from severe OCD, multiple personalities, and who knows what else. In the 14 yrs we’ve been together he has remained “stable” as his therapist says … Never getting any better or worse, and calling that in itself progress, according to his therapist, never striving for any other results other than keeping him “stable”. Last october his Psychiatrist decided to take him off Zoloft and replaced it witn Lexipro. Within a month I immediately noticed many changes in him including major mood swings, erratic behavior, obstinate behavior. His OCD rituals have increased immensely and he has become somewhat of a hermit. He has threatened physical abuse about 4 times this past yr. he is starting to have a very weird look in his eyes which is scaring me a little. I have been trying to get the attention of his Psychiatrist for a yr. She refuses my phone calls, and even when my husband said it was ok for me to accompany him on his appointments, she will not even entertain the thought. I have visited with his therapist several times with him to discuss this and the answer i get is that she is not involved and has no input into the medication prescribed which i find hard to believe. My husband has taken a major turn for the worse and i dont know what to do. I am sure his Psychiatrist does NOT know what goes on in his world and i think she needs to be informed in order to properly medicate him. How does she get away with this, ruining a persons life via the meds prescribed and how do i get her to listen ?? I am at my wits end. And he will not consider switching Doctors. I no longer know this person i live with and am a little bit afraid of his behavior. He has regressed terribly, however, i am sure he tells his Psychiatrist he feels great. Any suggestions .???

    • I am so sorry that you are in this situation. Is your husband open to seeing a new psychiatrist? If you feel unsafe, I would take him to a hospital and tell the doctors there about your concerns. They can put him on a psychiatric hold if they deem him to be a danger to himself or others, and hopefully they would reevaluate his meds.

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