This is life now (Our Long Story)


#1

I don’t know if my husband has Schizophrenia for certain. It seems to be what his doctor believes, but there has been no official diagnosis, so I apologize if I shouldn’t be here.

We’ve been married 4 years and have two young children. For the great majority of that, we have been incredibly happy. He has battled depression on and off, but nothing debilitating. Then, in November he got incredibly drunk. I knew he used alcohol as a coping mechanism, we had fought about it a few times. But this time he turned violent against me. I almost left that night, but settled for locking myself in a room with our children for the night. About a month later, he started getting excruciating headaches-- after never having had them in his life. His doctors found 2 masses in his brain that they are certain are benign.

While trying to find out the cause of these headaches, he began to have auditory hallucinations. We were not terribly concerned because we knew the masses in his brain could cause them. He heard people talking as if they were outside our home (could not make out what they said), footsteps, people trying to break in. Roughly 6 weeks after those started, the visual hallucinations came. He would see what he described as shadows and demons. He woke up once in the middle of the night convinced our child was standing at the end of our bed. We got him into a Psychiatrist and he has been on 3 or 4 different medications and things are only getting worse.

He sees large shapes in the road while driving, things flying at him from the sky. He has gone to run an errand and not remembered doing it, has left the house to go to the store and he was not allowed in the store because he wasn’t wearing shoes (he thought he was).

My brilliant, witty, affectionate husband is gone. He is angry, on edge. Snaps at the children. He has told them he will kill them (last time was because our older child was messing with his computer cord). He snaps at me, too for the first time ever. He rarely comes to bed. He has nights that he us certain somebody is going to break in and harm us. He has installed security cameras around our house and is begging me to agree to bars on the windows. Sometimes he just sits on the floor, knees to his chest and rocks back and forth.
He has told me that he feels nothing will ever help him, he is broken and he wants to die.

I’ve spent so many nights crying myself to sleep in mourning him. I know how hard this is on me (and our children for that matter), I cannot imagine what he is going through.

His family believes mental illness is shameful and not to be talked about and I have no family around here.

I don’t entirely know why I’m posting this. Perhaps because nobody understands.

What on earth can I do for him? How common is it not to respond to medication? His condition seems to be degenerative, will it likely continue to get worse?

And where do the caregivers find the strength? After 2-3 months, I’m so exhausted and stressed and tapped out. I’ve been put on an antidepressant. I know I need to stay strong and take care of him, but how?

I am sorry this is so long. Thank you very much for reading it.


#2

Hi Sakura~
You have a lot on your plate. You really can`t do this alone. Have you tried a NAMI support group?
Are these things happening because of these masses in his brain? If they are causing these symptoms-they are not benign! What do the doctors say about this?
Since you are looking after your children, I would be careful when your husband gets scary. You say his family is not supportive—where is yours? Sorry, not trying to be nosy. Also try calling social services in yor area. Even the doctors might be able to refer you to someone.
Come here often and let us know how you are doing.
Also wondering if these masses can be removed?
It is also common that a lot of meds will not work, or may just dull some of the symptoms. It usually is a trial and error situation to get the right combo of meds and the right dosage.


#3

Thank you so much for your reply. I have found a support group, but they do not meet for another month (just missed their meeting).

The doctors say he has had the masses since birth (idk how they know that when his first MRI ever was at the end of January) and that they cannot be causing anything. His second MRI (2 months ago) showed that they were not growing. Five doctors have told us that it is not the masses causing his problems. I find the timing incredibly coincidental, but I must admit I am no doctor. They will not remove them because apparently the surgery is a greater risk to his life. The larger one is located in a spot that could cause him to seize on the operating table and die.

My family lives 800 miles away. While they try to be supportive, there isn’t much they can do. I have thought a lot about what I would do if I have to take the children and go. I am under the impression that I can not legally take the kids out of state without his permission. I haven’t worked since shortly after we got married. Our savings is gone because we’ve been paying so many medical bills. (His and our baby’s, who was in he NICU, sent home on monitors and had tons of appointments, ultrasounds and X Rays for a few months). I think our church might help us, even though we haven’t been terribly involved (all the medical stuff), but my husband does not want me to tell anyone because he is deeply ashamed. I’ve tried reasoning with him and assuring him that I do not think it is shameful.

I thought that was the case with the medicine and have tried telling him so. He said it’s BS, the only thing that will help is drugs and alcohol (he’s never done drugs and has had no alcohol since November). He says he is only pain right now. His soul hurts and he can’t think, there is just pain. When I try to talk to him he just gets angry.

I’m sorry. I tend to ramble


#4

Oh honey!
Don’t worry. I don’t care if this was an autism, a physical disability support site, or a alcoholics anonymous. You need support and no true human being can deny you that and still be called respectable.
Have you thought about the hospital? You cannot allow yourself or your children to come to harm. Not only that but hospitals deal with this. This is what they do.
Have you talked to the doctors who are handling the tumors about this? I don’t know, but if that’s whats causing it I don’t know if psych meds are going to help… But I’m not a doctor.
-O-
big fat jelly bean hug.
Please come back and let us know how it is going.
I just want to know that things will get better.


#5

Hi Sakura. I feel so badly for you. Your situation sounds dreadful. I’m fairly new to all this as well, but I can tell you what my gut feeling is, reading your story. This is the part that jumps out at me: [quote=“Sakura, post:1, topic:6478”]
His doctors found 2 masses in his brain that they are certain are benign.
[/quote] Personally, this sounds alarming and if it were me, I would get a second opinion and beg for an MRI.

If they already did one, I would ask for the (radiology? neurology?) report. I believe you can even get a copy of the MRI in action, I guess it’s like a video of the procedure burned to disc… and even if you have to pay another Neurologist to view it and give a second opinion. If you can get the opinion from a Doctor in a different medical group, I think it would be best. I imagine Doctors are reluctant to badmouth another Doctor, especially if they are in the same medical group.

This is just my gut feeling as the first place to start. I’m pretty sure that the hospital must supply one copy (free) of any records the patient requests, including the MRI on disc. I have found record requests on some Hospital’s websites. Others you have to call in, or show up in person.

Hang in there. I pray for your family and that you are able to get answers.


#6

Welcome to the forum Sakura. You will find support here.

I know nothing about masses on the brain however to think that they will not or do not have an impact doesn’t make sense to me.

I know that you love your husband however keep your children and yourself safe first. If he has threatened to kill your children then they should not be around him while he is in this condition. Their lives should be priority.

Call social services. Call however you need to but get help for yourself and your family. Getting help is more important than your husband not wanting to tell anyone.

I wish I had better advise for you. What a tough situation. Your husband needs more help then you alone can provide.


#7

Ramble on! This is the place!
Even though you missed the first Nami meeting, there might be a contact that you can call–and they may have another member call you ( that`s what they did here. ) Sometimes it helps to just have someone listen.
Even though your family is far away, I would still call them and get their input. I have 2 sisters in CA., but they have been so supportive with money, advice…at one point, I had to go out there to live with one of them. My job, finances, and my son-all came crashing down at once and I could not cope with it alone. Maybe that could be a temporary option for you. your husband could stya with his parents?