My wife has been an SLE Lupus Patient for over 20 years. I believe that based on my understanding of her condition that she has an SLICC score of 15. She has been taking Prednisone for over 20 years at an average daily rate of 15mg/day and is 1.5 years into a taper that has her currently at her lowest of 10mg/day. I believe that she is paranoid of me, I believe that I have seen her have a transient psychotic break, and I know that she isn't making sound decisions. She has a tremendous sense of denial that gets her through her day. I am afraid to be around her and moved out. While I love her, and she says that she no longer loves me, I am grateful that she filed for divorce, and I have forgiven her for all of the resentments that I had. She has been able to hide these changes from her friends and her family. No one, including myself really wants to believe that her disease is affecting her brain, but if it didn't, it would be the only organ that Lupus attacks that isn't affected, so I have to believe that I am seeing this correctly. My only concern is for our young children. She now lives alone with them, and while they have begun to realize that something is wrong, they have no idea about how bad it is, and their safety has been increasingly put at risk. I would appreciate any insight as to how to navigate this difficult situation. Thanks
Have you talked with her doctors about prednisone sycosis(not spelled correctly)?
HIPPA prevents that discussion, but I have made her Dr. aware, and there was immediate concern.
Prednisone could cause this but so could CNS (central nervous system) lupus. Sometimes we forget how hard it is on our spouses. My husband is so healthy and full of energy and I feel so guilty that I don’t join him for his bike rides etc. I do work full time but after working 40 to 50 hours a week on my feet I don’t have much left to give to my spouse. I greatly appreciate all that he does though to keep our family going. Prayers going up for you and your family.
Also not to be forgotten is psychological issues that can occur with any chronic illness Even if her mental issues have an organic basis the psychiatrist is skilled in prescribing medications to help her cope Evaluation and treatment can be made a condition in the divorce and custody hearings if she doesn't seek help on her own
Research lupus psychosis. You may have to make some difficult decisions but it is quite serious.
I am someone who deals with neuropsychiatric lupus, which is thankfully well-managed, and that I was fortunately self-aware of when I was suffering most from it. Lack of insight is one of the most brutal things about being mentally I’ll… You are trapped and miserable but can’t tell what’s wrong, often being paranoid of others or even just blaming the outside world instead of knowing something is really wrong and you need to ask for help rather than distance! It sounds like you are very sensitive to the issue but can’t seem to help. While still legally married, you probably have some influence on medical decision-making if she is determined to be incapable of making her own decisions (which it sounds like isn’t the case even though the decisions she’s making might be bad ones, but if it gets worse maybe it’ll come to that!) She definitely needs your help, even if it’s with you stepping away. With HIPPA, you can’t get information about her from the doctor (especially with sensitive, more strictly protected mental health records.) But, you can and really should tell her doctors not only that you’re concerned, but a list of your observations. What you wrote here is a great start, and more detail would help them even more.
It’s really tricky about the steroids, because it cuts both ways. For me, steroids brought me back to a more mentally healthy state. But then again, I wasn’t on a very high dose (20mg/day) for very long (4mo) before starting to taper. Even at my plateau level, 7.5/day, it’s only been a year and a half (I just got diagnosed in 2012, and fortunately early enough in the disease process that most things are totally reversible still if treatment works.) In any case, I was actually treated for mental health issues (an atypical bipolar pattern) before we knew about lupus, and continuing on the psychiatric meds has been important. Most of all, me knowing it’s important has made a big difference for success. Maybe she can get there too, it’s just hard to get on track from within the deepest parts of the confusion!
While she and her doctors get to work on getting better (with your input to them at least), of course your kids need to be taken good care of. Is there a reason they’re living with her and not you? Or are they with you at least part of the time? You have rights to have them, and it should be easier to accomplish since she’s the one asking for the divorce. I know custody laws vary a LOT by state, but it seems like poobie is on the right track here. A dad I know who is stuck in a custody battle was forced to go thru an evaluation and a certain number of counseling sessions before he gets overnight custody (his ex is not well-intentioned like you, she’s bitter and deliberately abusing the fact that he’s a vet with well-managed PTSD and very successfully recovered from alcoholism, neither of which impact their son in any way, except for him being an even more dedicated and selfaaware parent!) Point being, one parent was able to influence the ability of the other to maintain custody, based on mental health concerns. My roommate, also a dad, and a very young one, has sole custody of his son because the mother became very unstable and psychotic after her pregnancy (sadly many illnesses, including mental illness, can be triggered by pregnancy/childbirth.) If my roommate’s ex were willing to be treated, she would probably be fine to have some limited custody, like weekends together but not managing the practical things like school, etc. But she never has accepted treatment, so he took her to court, which she failed to show up for, and moved on with raising his son.
My very best wishes for her, for you and your kids. I have great respect for your commitment and understanding. These things are soooo hard… And I’m sure being pushed away while you’ve been trying so hard to help is truly heartbreaking. Maybe things can turn around, and I’m glad you can use your space now to take care of your own needs too.
One more quick thing… Just because the doctor can’t discuss her situation and records with you, that doesn’t mean you can’t get guidance and patient/caregiver information about your concerns. The doctor can handle things in terms of “these are things to be aware of, and if you feel there are problems like this, here are things you can do to help, report, etc.” A doctor doesn’t normally have time set aside for this sort of thing, but if the clinic has a nurse, they might have these sorts of patient/family education services. If major concerns like this are impacting a patient, the nurse or patient educator should pass it along and have it addressed by the doctors. In an ideal type of clinic, at least. Also keep in mind that putting herself or others at legitimate risk can be grounds for involuntary admission to inpatient psychiatric care (getting “committed”) That’s an extreme thing that will pretty much obliterate her trust in you, and probably the doctors too, so nobody like to do it unless it’s an immediate danger of suicidality/homicidality and there’s no other way. Other kinds of smaller interventions can be much more effective, starting with her doctor steering her towards awareness if the issues and the availability of treatment for it. Medicalizing it instead of keeping it personal can be really helpful, like a review of if certain symptoms (the ones you can see but she doesn’t) are showing up as she’s tapering. If they are following the time course of the taper, she should be going back up in her dose!!! Since she’s unaware, she hasn’t probably said, “hey doc, this taper isn’t working too well.” If her doc isn’t very aware of neuropsychiatric lupus (a lot are behind the times on it, sadly), he or she might think it’s best to get off the prednisone ASAP, assuming that’s the cause. And maybe it is. But if things are getting worse as she tapers, not better, it’s probably on the wrong track! This is why informing the doc of your observations is so important. Best wishes!!!
Faladora said:
One more quick thing... Just because the doctor can't discuss her situation and records with you, that doesn't mean you can't get guidance and patient/caregiver information about your concerns. The doctor can handle things in terms of "these are things to be aware of, and if you feel there are problems like this, here are things you can do to help, report, etc." A doctor doesn't normally have time set aside for this sort of thing, but if the clinic has a nurse, they might have these sorts of patient/family education services. If major concerns like this are impacting a patient, the nurse or patient educator should pass it along and have it addressed by the doctors. In an ideal type of clinic, at least. Also keep in mind that putting herself or others at legitimate risk can be grounds for involuntary admission to inpatient psychiatric care (getting "committed") That's an extreme thing that will pretty much obliterate her trust in you, and probably the doctors too, so nobody like to do it unless it's an immediate danger of suicidality/homicidality and there's no other way. Other kinds of smaller interventions can be much more effective, starting with her doctor steering her towards awareness if the issues and the availability of treatment for it. Medicalizing it instead of keeping it personal can be really helpful, like a review of if certain symptoms (the ones you can see but she doesn't) are showing up as she's tapering. If they are following the time course of the taper, she should be going back up in her dose!!! Since she's unaware, she hasn't probably said, "hey doc, this taper isn't working too well." If her doc isn't very aware of neuropsychiatric lupus (a lot are behind the times on it, sadly), he or she might think it's best to get off the prednisone ASAP, assuming that's the cause. And maybe it is. But if things are getting worse as she tapers, not better, it's probably on the wrong track! This is why informing the doc of your observations is so important. Best wishes!!!Thank you so much! I feel like no one understands what I am going through and it is so helpful to hear it from someone that is also dealing with these types of issues and is not in an adversarial relationship with me. She cut off all contact between my kids and I a month ago without basis and I am afraid to be in her presence without a witness. I am pursuing every option that I can to put our kids first.
Reading your post broke my heart. It must be very difficult for you because you are damned if you do and damned if you dont. You must really love your family to continue to fight this way for them. Remember that the most important thing right now is protecting those kids. God bless you. Mental illness is so very difficult to deal with. Don’t give up and get as much support as you can for yourself.
Hi Lupus Husband, Wow ! am sorry to here the thing's that you have stated about our family member , "Living with LUPUS " , for the Love of your wife (ex , and the small kids that have NO CLUE ) , i feel as though you did the first step , Talking with her doctor !!!! For the sake of the kids, remain calm and view the safety of the kids in Heed ??? NOt saying that she ( their mother / your wife -ex ) will harm them , But to stay focused ? The thing's that she is going through is denial - of some sort , and again letting her doctor know was GREAT to start ! Post and let us know how everything turn out , but be that friend to her that you all once were ,that is Important also - " Being the peson that got you married or when you were dating , that helps at lot to help that person whom has problems of this nature . My wish's go out to you ....Beverly L.
Lupus Husband: I am so sorry to hear all you, wife and your children are going through. My husband was a HIPPA advisor and he told me that if your wife gives the doctor permission to talk to you he can. You somehow need to make your wife understand your love for her and your children, for her to get the care that she needs. Prednisone meds to me, are a double edged sword, a wonderful drug, and then again not..... It can cause physic problems, as CNS lupus, and just a chemical imbalance can. I hope you can get the proper care for your wife, for her sac and your children's.. Good luck.
Eagle41 said:
Prednisone could cause this but so could CNS (central nervous system) lupus. Sometimes we forget how hard it is on our spouses. My husband is so healthy and full of energy and I feel so guilty that I don't join him for his bike rides etc. I do work full time but after working 40 to 50 hours a week on my feet I don't have much left to give to my spouse. I greatly appreciate all that he does though to keep our family going. Prayers going up for you and your family.Thank you
I can't thank you enough for taking the time for your response. It is so on target for what we are dealing with, and I feel so trapped with trying to protect myself from her paranoia and psychosis in the context of domestic violence laws, HIPPA laws, and the custody laws. In order to do the right thing for myself and our kids, I have accepted that I need to accept the divorce and seek custody so that I can be a resource for our kids. I have accepted that this is the best course of action to help her too, because she will fight me to the end, and in doing so will need to be independently evaluated, and perhaps this will be the entry to her becoming aware enough to accept treatment.
Faladora said:
One more quick thing... Just because the doctor can't discuss her situation and records with you, that doesn't mean you can't get guidance and patient/caregiver information about your concerns. The doctor can handle things in terms of "these are things to be aware of, and if you feel there are problems like this, here are things you can do to help, report, etc." A doctor doesn't normally have time set aside for this sort of thing, but if the clinic has a nurse, they might have these sorts of patient/family education services. If major concerns like this are impacting a patient, the nurse or patient educator should pass it along and have it addressed by the doctors. In an ideal type of clinic, at least. Also keep in mind that putting herself or others at legitimate risk can be grounds for involuntary admission to inpatient psychiatric care (getting "committed") That's an extreme thing that will pretty much obliterate her trust in you, and probably the doctors too, so nobody like to do it unless it's an immediate danger of suicidality/homicidality and there's no other way. Other kinds of smaller interventions can be much more effective, starting with her doctor steering her towards awareness if the issues and the availability of treatment for it. Medicalizing it instead of keeping it personal can be really helpful, like a review of if certain symptoms (the ones you can see but she doesn't) are showing up as she's tapering. If they are following the time course of the taper, she should be going back up in her dose!!! Since she's unaware, she hasn't probably said, "hey doc, this taper isn't working too well." If her doc isn't very aware of neuropsychiatric lupus (a lot are behind the times on it, sadly), he or she might think it's best to get off the prednisone ASAP, assuming that's the cause. And maybe it is. But if things are getting worse as she tapers, not better, it's probably on the wrong track! This is why informing the doc of your observations is so important. Best wishes!!!