Family and Caregiver Schizophrenia Discussion Forum

What to do...My World is a Mess


#1

Greetings All,
Thought I’d throw my world into the mix here, don’t know why for sure, maybe to help show the many sides of this.

My wife of 20 years now dropped into a severe depression after the loss of a pregnancy in 2003. She finally agreed to see a counselor and was diagnosed Bipolar in 2004. Went through all the meds to help but she still had a very difficult time day to day and went on disability the same year after the loss of a job and the terrible side effects from one of her medications she was, “trying”. After about a year of “medication experimenting” they finally found something that worked pretty well. At least she was out of the bed room.

Everything remained, “stable” for the most part, sure she was a bit verbally abusive at times and still had the occasional manic idea but we were surviving. She always had a fascination with ghost/haunted shows on television to the extent that she once asked her father if after he passed would he please try to send word back. He also had a bit of fascination, I think.

Then after the passing of her father in 2011 she became obsessed with receiving word from him. There was a blank piece of paper left on her desk with a small pencil, a blank Word document left open on her computer just in case. Then she started to experiment with Electronic Voice Phenomena, (EVP).

In short this is supposedly where you record your asking a question then be silent…when you listen to the recording once in a while there will be an answer. She did a bunch of these and would analyze them on her computer with some software that was free to download. She would sit for hours on end with the head phones on and then she started to hear things. She would ask for me to listen, but I would hear nothing.
She did not stray from her medications, does not drink, no illegal substances.

Suddenly, she started having conversation with the voice she was hearing, then, I knew we had a problem. This quickly moved to not needing the head phones on and she claimed she could hear the voice through any white noise in the house, (sound of the refrigerator running etc.) Very quickly it got real bad.

A voice entered her head and it was terribly abusive towards her and then she would complain that the owner of the voice was hitting her in the head, she would sit holding her Bible over her head or a pillow in order to protect herself from this thing. She claimed to see fights between demons and angels in the middle of our living room. She had visions of our children, all grown and moved out, being mutilated. This progressed very quickly. Then there were three days she spent in bed, and told me they were going to kill her that night and were shredding her insides. She was peaceful with her statements at this time.

This whole time I tried to convince her that these were all signs of her condition and that if we saw her councilor we could fix it. She refused to listen. Then after a huge blow up, a lot of tears, she finally she agreed to go. She had refused because she spent some time in a hospital when she was a teen and feared that they would, “lock her up” for something that was “really happening”.

I was even accused of cheating on her, one late night she came and got me out of bed because of a friend on facebook, a girl, I worked with 15 years prior and now lives over 100 miles away. A long discussion about, I go to work, I call home, she calls my work and I’m only late getting home when we need something from the store. When was I cheating?

So I make the appointment, time for her quarterly med check in…we walk in…I have always attended her appointments. Typical small talk, how are your meds etc. My wife talks a bit about this and that, nothing important and I sit there waiting for her to bring up what had been going on, because I was going to if she didn’t.

Finally she told her councilor the things that she was experiencing. I felt an extreme relief come over me as I was certain a med adjustment would fix things up. Then…something happened that I did not at all expect. Her councilor said, “well, that’s not psychosis” to which I quickly asked, “what do you mean?” which the councilor said, “it’s not psychosis, it’s something else”. So…mouth hanging open I sat stunned. Gathered my thoughts and asked, “what do you mean, something else…well how about we try a med that might quiet it down a bit at least?” The councilor then said, “I can prescribe an anti-psychotic but it isn’t going to help this”. My wife then perks up and asks, “if it’s something else, what is it, how do I stop it?” The councilor then says, “you need something like a shaman, medicine man” and went on to tell us that technically she could lose her license for sharing this because it isn’t accepted in the scientific world though many in her profession have run into it and do beleive, “but, there is something else out there”.

So we left the appointment, prescription in hand…didn’t do a thing.

Now, 4 years later, my wife has grown to live with the voice and various pains it causes her. The best one is the tooth pain, located squarely where she has a bridge, (no tooth). Dentists are stumped. During these four years, endless research, endless talking of the subject.

She is now off all medication, with no change good or bad.

In the last year, she has found a love for horses and now she is finally driving again to go to the horses. Every day, she gets up and goes and has again found some happiness.

Years of the above has beaten me down so far that I woke up one day a few months ago and realized that I had given up everything, except my job to watch after her. No friends, closeness with my family lost you name it, I gave it all up and I am now unhappy…very unhappy. I talked with my wife about it which caused a bit of an argument, she told me go get a friend. Not sure she remembers the two friends that entered my life during the 4 years that she protested against and it was just easier to stay home with her.

So…now I am seeing a councilor…I am told to stop worrying about my wife, let go and worry about myself. Something I have never done… at least not in over 10 years ”what makes you happy?” I’ve been asked. “Don’t know” I answer. My wife still suffers from the voice and various pains, (which have been labeled entity interacting with her) but I am having difficulty imagining myself staying by her side. We have nothing in common any longer, she has the horses which I have grown to hate due to the cost and constant talk about how wonderful they are and she has the entities that fill the rest of the talk time we have.

I feel very empty and alone any more. I have often said that I can’t leave her due to the fact that her disability check will not cover her needed expenses, home and the horses and I don’t want to strip these items from her life.

But I need a life as well. I have even thought about just leaving, no explanation just leave town and be done. What to do?


#2

Its very very unusual in this day and age for a psychiatrist to attribute voices and hallucinations to real spiritual happenings not that i do not believe that a spiritual reality exists but she has shown other examples or paranoia outside of a religious context so to attribute all of her symptoms to essentially a real problem with possession it seems really strange and maybe this psychiatrist should be reported a psychiatrist like anyone else can have a mental problem or breakdown theyre not immune from anything the same as anyone else and obviously as a psych he has influence over many other people who are struggling with delusions and the this psychiatrist at the very least needs to be honest with parents and family members about the “prescription” he is prescribing and his personal and religious views if that is going to be apart of the therapy so they can decide to entrust their loved ones/themselves to this persons care not every patient is going to have a loved one with them in the office who is thinking logically so not sure keeping that a secret is such a great idea .

Im sorry you and your wife seem to be at a crossroads in your relationship and your questioning your future together you and her have been together for a long time maybe marriage counseling would help it sounds like you have some resentments and regrets have you shared this with your own counselor ?

I think thats fantastic that your wife can function and is happy without medication at all - if life works without medication and she is aware of and is not bothered by the voices/delusions is not dangerous to herself and other people , and can live with the delusions and voices and realizes they are not real and more or less ignores them some people can do that and some cant … medication has side effects some worse for your well being and happiness in life than the distraction of annoying voices anyways thats just my opinion :slight_smile:


#3

Problem with finding someone new for her to see…
Her first councilor was an intern, she was perfect, my wife trusted her. Took a few months of visits for a diagnosis of bipolar and to begin meds. Then, well she graduated and moved to another state. Next intern assigned to her, first year intern, two visits in and this intern said, “I don’t think your bipolar”, she just closed her text books two weeks prior and now she’s a pro. So we sought a new councilor. Found one, met with him and he seemed very up beat and kind. Little did I know that his bed side manner was much different and was pushy and a bit of a bully when I wasn’t in the room. So we found the current one. Up beat, always positive and she’s been with her for 6 or 7 years. Wife has trust issues in this area and getting her to see someone else, lets just say I’m trying.

Yes it is fantastic that she is functioning and has found her happiness, all I ever wanted for her. The problem is her belief in many of her hallucinations. She is not a danger to herself nor others, just not a lot of the woman I married left. Beliefs are very different now. Will probably look into couples therapy but not real sure she believes there is a problem.

Yep, shared all the above with my councilor, and we are working it.


#4

What about her family? Does she have other people in her life that would also like to see her living a life without delusions?

If you leave - how will she support herself?

If you can’t stay with her because you’re hating life, and your wife can’t support herself - then its imperative that she gets treatment. Nobody wants to see her homeless; thats a terrible outcome.

What state or country do you live in? Different resources are available depending upon your location.
A good place to start is by talking with your local NAMI office: http://www.nami.org

I would definitely get help from her extended family if you can - they all need to pitch in and help with this, and you would really benefit if you were not the only person dealing with it.


#5

Yep, hating life. Nope, can’t leave her to fend for herself so no homelessness in her future.
As far as family, Grandmother who adopted her passed in October, biological mother in Hospice in Dallas. Two daughters who both exhibit similar behaviors, just not as advanced. One has sever paranoid problems the other is on the same page as my wife. One son who seems okay but has had struggles with severe panic attacks. Sister, is off the radar with her problems, always has been the outcast so there is no contact. Brother is having health issues and struggling to keep his head and family above water.So really I am it.


#6

Wow - that is really tough. You need to develop a strategy that helps you - perhaps vacations with a friend to get some down time and recovery for you, a therapist for yourself, anti-depressants for yourself to help you cope,

perhaps work to get her moving towards self sufficiency via some part-time outside work, or if all else fails, assisted treatment:

http://schizophrenia.com/invol.html


#7

Yep, got a therapist, figured it was time for a tune up. As far as anti-depressants, not going to go that route. Therapist says I just gotta get my life back. Kinda let her illness consume my life over the years.

As far as vacationing with a friend, unfortunately I have no friends left but trying to establish some new ones. Did find a pretty good friend from the past, she actually helped me to start dating my now wife…funny the way jealousy can get ya what ya want. Well, we were/are nothing but friends and one night my wife’s condition took off with her imagination and I was accused of having an affair. That took about a week to get through, I go to work, she calls me at work throughout the day, I come home. When is there time for an affair?

Working on some part time work for her. She keeps saying she’ll give it a shot, but has yet to take the first step. Keeps asking for help getting started…keep agreeing to help…but I guess I’ll have to just start and see if she follows.


#8

You are very patient and enduring and yes, you definitely need to make some space for yourself and other friendships. I am not in the States but I believe that NAMI can be very supportive for carers there.


#9

My son lives alone and is on SSDI.
He does not get enough money–so I supplement every week.
You can still get yourself to a healthy place and continue what you are doing, but only if it doesn`t sink you also.
Wishing you luck!