Passing info on to therapist and psychiatrist

[Anonymous]

Anyone BTDT?
Background: Young adult DS with depression, anxiety and ADD. Numerous behaviors that are odd and dysfunctional. Mood is generally stable, still moderately depressed and unmotivated. Taking prescribed meds as directed.
Things observed that I want to pass on (and I realize there is confidentiality between DS and providers, so they will take info, but not share back with me): Lying episodes, evidence of what I think are self-sabotaging behaviors, and expressions of suicidal thoughts.
The suicidal stuff is a concern, obviously, but he has no plans and it was only a one time expression of "sometimes I think it would be better if I'd never been born" and "I would never do anything, because I love you, and it would hurt you too much".
Because of the lying, I am afraid he might be glossing over things with his therapist and psychiatrist. I have no way of knowing obviously, so I want to be sure they are getting a different viewpoint.
What do you think? Do I do this by email, a phone call? Has it been helpful for your loved one, if you have given the therapist and/or doctor more info?

[Anonymous]

I have BTDT with my ex-spouse multiple times. He is bipolar. The first time my therapist recommended that I call his therapist to share some worrisome signs. I did so and asked that he keep my sharing confidential. He called me back and advised me that he could not acknowledge that my then husband was a patient and that in any case he would never agree to keep anything private as it would destroy his therapeutic relationship. He advised me if I had a problem to ask my spouse to come in with him on his next visit. We did so, but to be honest, the psychiatrist's unwillingness to include family in treatment was a red flag that he wasn't very good.

The second psychiatrist was very clever and at our first early joint visit essentially said to my spouse in front of me -- "well, you would want her to be able to call me if she was worried about something wouldn't you?" Of course, my spouse could hardly say no, and thus the psychiatrist had put my spouse in a position to have waived any HIPAA privacy rights. I called him from time to time if I saw anything that indicated a change in moods. Over time, the psychiatrist came to see that I was often right and he came to trust me. This was the time that my exDH experienced the longest stability.

Another time I had to call a physician (not a psychiatrist) to follow up on something. That time, I basically told the office staff that I respected HIPAA, but that I was providing information to them and they were not revealing anything private and that the doctor should call me if the information I provided indicated there was an emergency. (It did and the doctor called me back almost immediately, as an emergency entitles him to waive HIPAA. ) In that instance, I was able to track my exDH down and get him to go to the emergency room, which he had been advised but failed to do.

Unfortunately, exDH's psychiatrist retired. My DH is now my exDH, and I have no connection to the new psychiatrist, so I do not call. I suppose I might if I saw something really dangerous, but the honest truth is I am tired of this role. However, if it were my child instead of my exDH, I would not stop contacting the doc.

I would do it by email or fax. It creates a written record. You can choose your words carefully. And, you can submit your entire information before someone cuts you off and says they can't listen due to HIPAA. I think you have to offer to have the psychologist share your observations with your child. Asking for it to be kept secret is probably a non-starter.

What's your relationship like with your child? Can you ask to meet the therapist, suggesting that you want to learn how to best support your adult child?

Do you have a therapist for yourself? I found it very helpful to have a therapist to help me deal with my spouse's mental illness. A therapist is also the best place to get guidance on specific steps to take regarding suicidal threats or talk.

Have you ever taken NAMI's Family to Family course or participated in support groups? These can also be helpful. I also love a book by David Karp called The Burden of Sympathy. It discusses the dilemmas of having a mentally ill relative. It's always so hard to know where to draw boundaries. Also good is "I'm not sick, I don't Need help" by Xavier Amador; it addresses how to talk with an MI loved one in oder to encourage them to stay in treatment.

[Anonymous]

I''m not the OP but wanted to thank the PP at 14:29 above. Very helpful post especially the book recommendations at the end. Hope they help OP too.

A close friend is very involved in his brother's mental health issues and treatment (and resistance to treatment at times), and I fear it's compromising my friend's own day to day life now. The books are resources I'll ask him to check out.

[Anonymous]

Anonymous wrote:Anyone BTDT?
Background: Young adult DS with depression, anxiety and ADD. Numerous behaviors that are odd and dysfunctional. Mood is generally stable, still moderately depressed and unmotivated. Taking prescribed meds as directed.
Things observed that I want to pass on (and I realize there is confidentiality between DS and providers, so they will take info, but not share back with me): Lying episodes, evidence of what I think are self-sabotaging behaviors, and expressions of suicidal thoughts.
The suicidal stuff is a concern, obviously, but he has no plans and it was only a one time expression of "sometimes I think it would be better if I'd never been born" and "I would never do anything, because I love you, and it would hurt you too much".
Because of the lying, I am afraid he might be glossing over things with his therapist and psychiatrist. I have no way of knowing obviously, so I want to be sure they are getting a different viewpoint.
What do you think? Do I do this by email, a phone call? Has it been helpful for your loved one, if you have given the therapist and/or doctor more info?

You stated that your son has ADD, depression and anxiety. The professionals know the behavioral issues and tendencies someone like your son has. Could he benefit from your sharing with the professional? I would think so. But would your son be willing to allow that? If he would, and is largely committed to the solutions, then I believe it best to do so together. One risk you take though is if he isn't really ready then he will go on the defensive and spend way too much time trying to persuade that those issues aren't real. Which is a nice way of saying...he will lie about it.

One thing that you will need to learn to do...let go. As much as you want to help your son you cannot control what he does or does not reveal nor can you control what he does in his day to day. AND, it takes a lot of patience along the way. For instance you will need patience to not project conclusions or impose past results on the present effort.

I hope your son stays the course and get this taken care of. I can tell you from experience it isn't easy but life is so much better with the larger part of the load off and the knowledge and ability to handle that which remains.

[Anonymous]

14:29 again.

PP @ 16:17, may I respectfully suggest you read these books yourself? You are not helping your friend by pressuring him to do something that he clearly feels uncomfortable with. How about instead of pressuring him to give up the relationship or stop helping, you offer to support him in ways that enable him to help his sibling?

I think one of the hardest things about having a family member with MI is the constant encouragement we receive to abandon these loved ones. Sometimes this encouragement comes because people mistakenly believe that the MI loved one is deliberately choosing to engage in "bad" behavior. It can be very hard to separate what is chosen behavior and what is driven by illness -- lying, anger, hypersexuality, money problems, irritability, irresponsibility -- all of these can seem like choices when often they are the result of mania or depression. Although it is true that sometimes we have to separate from the MI loved one to keep ourselves safe, it is more often true that "bad" behavior is a sign that the illness is not being properly treated.

Sometimes we are advised to "let go". We are told we are "co-dependents" and that we need to learn that we can't control anyone else. We are told that the MI loved one can't get better until they "hit bottom" and "learn to care for themselves". But, as Amador's book so elegantly shows, there is a feature of MI called "anosognosia" (which means that the patient lacks awareness of their own symptoms) which often prevents patients from fully reporting their symptoms to providers. These patients aren't making a conscious choice to hide their symptoms, rather they simply lack insight into the existence of these feelings/behaviors as symptoms of illness. Hitting "rock bottom" is unlikely to change much because the "bad" behavior is not a result of denial but rather of anosognosia That is why the "best practices" documents of major organizations like the American Psychiatric Association encourage the inclusion of family members in treatment. There is also evidence from medical trials that therapy which includes the family (Family-focused Therapy or FFT) leads to longer periods of stability for the MI loved one. This is why, in fact, reporting from the family to the provider is SO important.

I received all kinds of advice from therapists and doctors to abandon my MI spouse. The advice left me aghast. There is no way that if my spouse had major cardiac disease or cancer that I or he would have been treated the same way. I can't imagine that if my MI spouse came down with major cancer and refused to acknowledge it, take meds or keep appointments that I would have been told to "let him hit rock bottom." If my spouse had cancer, no one would have advised me to stop supporting him because I was spending my retirement money to ensure his treatment or that I was using so much time talking to doctors and ensuring that he took medications that I didn't have time to take care of myself or my own career.

No, actually, if my exDH had cancer, our entire network of neighbors, friends and work colleagues would step forward and organize nightly dinner deliveries, offer to babysit or run errands or donate some sick leave to cover his time off work.

I can assure you that none of this happens when you have a chronic mental illness. Sadly, people just encourage you to let go and give up. Karp's book eloquently addresses the additional pain this causes for the family members.

[Anonymous]

True words, PP. I can't imagine using a psychiatrist who didn't welcome my input on my partner or child. I've seen too many times where someone will tell the doctor that things are a little rough, or not too bad, when they're practically suicidal or seeing everything in a completely distorted way.

[Anonymous]

Anonymous wrote:True words, PP. I can't imagine using a psychiatrist who didn't welcome my input on my partner or child. I've seen too many times where someone will tell the doctor that things are a little rough, or not too bad, when they're practically suicidal or seeing everything in a completely distorted way.

Very true! In fact, I was fascinated recently when my DD went for a physical with her adolescent medicine specialist. She had previously told the doctor several months prior that she was feeling tired and down. The doctor brushed it off. DD went again and told the doctor that it had gotten very bad and she had felt very sad. The doctor asked "did you ever feel like hurting yourself?" And DD answered "not really". I was shocked that the doctor let this pass as a "no" instead of gently following up with my DD. The moral is, that while it's true that sometimes the MI person isn't reporting accurately, it is also true that sometimes providers don't want to hear it or minimize what the patient is feeling. I have seen this repeatedly, both with doctors and with family members.

[Anonymous]

Op here. DS is currently with his therapist, whom I had emailed an update yesterday. We see a family therapist, but none of us are feeling it with him. DS likes the lady he sees for individual counseling. We thought to keep DS's therapist separate from the family's, but I am wondering if it might be better to have the one therapist oversee both DS as an individual and the family as a unit. If he would be okay with that, would PPs or NPs who've BTDT advise on this?

[Anonymous]

Anonymous wrote:14:29 again.

PP @ 16:17, may I respectfully suggest you read these books yourself? You are not helping your friend by pressuring him to do something that he clearly feels uncomfortable with. How about instead of pressuring him to give up the relationship or stop helping, you offer to support him in ways that enable him to help his sibling?

I think one of the hardest things about having a family member with MI is the constant encouragement we receive to abandon these loved ones. Sometimes this encouragement comes because people mistakenly believe that the MI loved one is deliberately choosing to engage in "bad" behavior. It can be very hard to separate what is chosen behavior and what is driven by illness -- lying, anger, hypersexuality, money problems, irritability, irresponsibility -- all of these can seem like choices when often they are the result of mania or depression. Although it is true that sometimes we have to separate from the MI loved one to keep ourselves safe, it is more often true that "bad" behavior is a sign that the illness is not being properly treated.

Sometimes we are advised to "let go". We are told we are "co-dependents" and that we need to learn that we can't control anyone else. We are told that the MI loved one can't get better until they "hit bottom" and "learn to care for themselves". But, as Amador's book so elegantly shows, there is a feature of MI called "anosognosia" (which means that the patient lacks awareness of their own symptoms) which often prevents patients from fully reporting their symptoms to providers. These patients aren't making a conscious choice to hide their symptoms, rather they simply lack insight into the existence of these feelings/behaviors as symptoms of illness. Hitting "rock bottom" is unlikely to change much because the "bad" behavior is not a result of denial but rather of anosognosia That is why the "best practices" documents of major organizations like the American Psychiatric Association encourage the inclusion of family members in treatment. There is also evidence from medical trials that therapy which includes the family (Family-focused Therapy or FFT) leads to longer periods of stability for the MI loved one. This is why, in fact, reporting from the family to the provider is SO important.

I received all kinds of advice from therapists and doctors to abandon my MI spouse. The advice left me aghast. There is no way that if my spouse had major cardiac disease or cancer that I or he would have been treated the same way. I can't imagine that if my MI spouse came down with major cancer and refused to acknowledge it, take meds or keep appointments that I would have been told to "let him hit rock bottom." If my spouse had cancer, no one would have advised me to stop supporting him because I was spending my retirement money to ensure his treatment or that I was using so much time talking to doctors and ensuring that he took medications that I didn't have time to take care of myself or my own career.

No, actually, if my exDH had cancer, our entire network of neighbors, friends and work colleagues would step forward and organize nightly dinner deliveries, offer to babysit or run errands or donate some sick leave to cover his time off work.

I can assure you that none of this happens when you have a chronic mental illness. Sadly, people just encourage you to let go and give up. Karp's book eloquently addresses the additional pain this causes for the family members.

See bold above. I posted at 16:17. I think you read some intentions into my post that were not there. My brief post was mostly:
A close friend is very involved in his brother's mental health issues and treatment (and resistance to treatment at times), and I fear it's compromising my friend's own day to day life now. The books are resources I'll ask him to check out.

I don't say or indicate there that I am, as you put it above, "pressuring (my friend) to give up the relationship or stop helping" his brother. Sorry if you misread "I fear it's compromising my friend's own day to day life" as "I think he should stop helping" -- not at all the case. I didn't want to get into details in a post. I'm just concerned that the caregiver brother does not always remember to look after himself well at times. He won't be able to keep helping his brother if he is worn out himself, and it's pretty vital that he be in good enough shape to be there for the MI brother for a long time to come. Caregivers do burn out -- but I would never "just encourage (him) to let go and give up." I'm so very sorry that you have had the awful experience of people telling you to abandon an MI loved one--that's a tragic statement, coming from the therapists and doctors who said it to you. But that is not at all what I meant regarding my friends.

[Anonymous]

Anonymous wrote:

I don't say or indicate there that I am, as you put it above, "pressuring (my friend) to give up the relationship or stop helping" his brother. Sorry if you misread "I fear it's compromising my friend's own day to day life" as "I think he should stop helping" -- not at all the case. I didn't want to get into details in a post. I'm just concerned that the caregiver brother does not always remember to look after himself well at times. He won't be able to keep helping his brother if he is worn out himself, and it's pretty vital that he be in good enough shape to be there for the MI brother for a long time to come. Caregivers do burn out -- but I would never "just encourage (him) to let go and give up." I'm so very sorry that you have had the awful experience of people telling you to abandon an MI loved one--that's a tragic statement, coming from the therapists and doctors who said it to you. But that is not at all what I meant regarding my friends.

I appreciate your clarification. You are absolutely right that caregiver burnout is a big problem. My point is -- it's not that helpful to hand someone a book and say, "I'm worried that you're not taking care of yourself." There are only so many hours in the day, and when someone says this to us, the only way we can see to take care of ourselves is to spend less time on our loved one. What IS helpful is to say, "I'm worried that you don't have time to take care of yourself -- let me babysit the kids this Saturday, so you and your spouse can go out and have some downtime to yourselves." Or "let me bring dinner and watch the kids while you visit with your brother." Or, "I really think you need to talk to a therapist regularly about your brother. I'd be happy to babysit (or drive or bring dinner or whatever) so that you have time to do that."

[Anonymous]

Anonymous wrote:Op here. DS is currently with his therapist, whom I had emailed an update yesterday. We see a family therapist, but none of us are feeling it with him. DS likes the lady he sees for individual counseling. We thought to keep DS's therapist separate from the family's, but I am wondering if it might be better to have the one therapist oversee both DS as an individual and the family as a unit. If he would be okay with that, would PPs or NPs who've BTDT advise on this?

It was difficult for me to understand how to coordinate therapists when we had to see one after my exDH's hypomania and depression from as yet to be diagnosed bipolar. I think in retrospect, what I would say is that, IME, it doesn't really work well one one therapist has multiple clients with conflicting issues/interests. So, a therapist who is treating both a MI patient and his family has conflicting responsibilities sometimes to the individual and the family as a unit. IMO, the therapist who is treating the MI person does better when they integrate family into the MI person's treatment, but it's clear that the MI person is the patient to whom the therapist has responsibility and that the family is being integrated (and educated) as part of the effort to support the MI patient.

I did better when I had a therapist for myself that discussed my exDH's illness and behavior and supported me about that, but it was clear that my therapist didn't have any responsibility to anyone other than me. I felt more like I was getting the unvarnished truth, and I never wondered what she knew but was withholding. I also felt that she was recommending what was best for me, and not necessarily encouraging me to do things that were really not in MY interest, but were in the interest of my spouse or the maintenance of the relationship. Conversely, I'm sure my exDH never worried that his therapist would share something with me that my exDH didn't want to share. It was clear that his therapist was HIS and would only reveal things with his permission. (except for the circumstances in which I was reporting changes in mood, which was something that my exDH approved, as I already explained above).

Recently, I went to a therapist with one of my children (for a different issue). It was clear that the therapist was for my child, but I really liked how the therapist handled the family aspect. The therapist explained that she would talk to us together first (parent and child) and then talk to each of us separately in case there was anything either one of us didn't feel comfortable discussing in front of the other. When we came back together at the end of the appointment, she clearly explained her diagnosis and recommendations to both of us. Of course, this is slightly different than OP's situation because my child is still a minor.

If you have issues as a "family" that are separate from or don't stem from your DS's illness, then I would say it's important to keep a separate family therapist. If your family issues mostly stem from the illness and how to deal with it, then I would say DS's therapist should be interacting with and educating your family more how to support DS.

Most importantly, if you're not "feeling it" with the family therapist, it's perfectly OK to shop around. Between my exDH and me, we went thru 6 therapists and/or doctors before we found ones who knew what they were doing and with whom we felt comfortable. If you are dealing with mood disorder (or anxiety or whatever), you REALLY need to see both psychiatrists AND therapists who specialize in working with mood disordered patients. I tend to try to stick with PhD therapists who are affiliated with major university systems, as I think they are the best trained and have the most experience and are most up to date with treatment changes (which are happening fast in this field) and they are also most likely to take a wide variety of insurances.

[Anonymous]

I think it's important to talk to your son about this. Explain your thoughts and worries and ask if he would be okay if you shared certain things. If you share VERY personal and private things with his therapist without your sons knowledge you absolutely betray trust and undermine your relationship on the very very basic roots.

Personally I am against talking to anybody's therapist without the approval of the client. The only exceptions to me are suicidal thoughts, self harm and harming others - and even for this I would never do it without letting my child know first that I will share these things even if he/she is not okay with it because it's my duty as a mother to make sure my child is safe. Anything other than suicide, self harm or harming others is not my place to discuss with my child's therapist.

[Anonymous]

PP here. I also BTDT and would absolutely advise for separate therapists for each individual that needs treatment. Therapy is a VERY private thing and for it to work properly one has to be able to rely that the therapist has responsibility to the patient and not the patients family. Confidentiality, trust, sharing, never knowing what might be known or withheld...that's all a very bad basis for successful therapy. For adults, if they agree to share therapists it's fine. But children can not really understand all the possible consequences so they need to be protected by having their own individual therapist.