Hi there,
I’m new to this forum. I have a 19 year old daughter who as far as I know has not been diagnosed with schizophrenia or schizoaffective disorder yet BUT my husband and I strongly believe that is what she’s dealing with.
Backing up a bit- We have 3 daughters. Our middle daughter has always been different from most kids we’d see her age. She was shy, physically aggressive with her toys and with other kids. Had major anxiety about the weirdest things. Harder to handle but we made it work by putting her in soccer. She played club soccer for years. Played very well although she had trouble forming friendships and trusting relationships with her teammates. She’s always had suspicions of others intentions. In her early teens she started telling us that she was seeing things in her bedroom at night. A faceless man in particular. We thought she was just imagining things. Eventually she said she learned to ignore him. We thought she was just story telling. She only brought it up periodically through the years and it was sort of forgotten.
Then one day we get a phone call that my husbands mother was taken to the psych ward. Come to find out she has schizoaffective disorder and my husband never knew she had it. She was diagnosed years ago. She handles it pretty well when she’s medicated properly. But it explained a lot considering my husbands traumatic childhood.
Back to my daughter - one day out of the blue after I had noticed she’d been secluding herself constantly in her bedroom, she called her loving boyfriend over and they were being secretive and she was telling him that something was very wrong. I asked her what was going on and she told me she had to leave and she’d be back in an hour. She actually went to therapy and was then involuntarily admitted into a psych ward. After a few days she called me from the psych ward and I immediately thought maybe she really was having hallucinations again. I told her I was proud of her for getting help she then told me she was in there because she was afraid my husband and I were planning to kill her. That was January of this year. She started telling me of all these repressed memories that are coming back and making up stories about abuse that did not really happen. Later her younger sister told me that she had actually told her one time that she heard voices telling her to kill her father in his sleep.
Since her hospital stay she told her sisters that she was diagnosed with PTSD and then told her older sister that she has memories of being sexually molested by her father. The accusations are absolutely not true. Now her delusions have progressed to her thinking her sisters also want to kill her. She has blocked all of us, changed her appearance and her phone number. She’s moved and made her boyfriend block us as well. The only thing that keeps me hopeful is that her boyfriend really cares for her and I can actually see her bank transactions through my bank app. She has stayed in therapy and is continuing it. But she’s been paying for EDMR therapy and I believe it’s doing more damage in creating more delusions. She won’t let a single family member contact her including grandparents, aunts and uncles and cousins. All people she’s been close to. She told my dad she can’t trust anyone anymore. We have no rights to help her because she is an adult.
To top it off my mother in law told us that she has 2 other people on her side of the family who have paranoid schizophrenia. I don’t think My daughter has told her therapists about any of our family medical history. She believes her delusions are very much real.
My worry as that it will take too long before she’s treated properly and it will cause more damage that could have been prevented. My baby is gone and scared of the people she used to be the closest to. I can’t do anything to help her and I’m so overwhelmed.
Any suggestions? Or is there nothing I can do at this point but wait?
I am so sorry @concernedmomof3 for what your daughter is going through and the pain and heartache it is causing you. It is horrible to feel helpless when our loved ones are ill.
First off, remember that you didn’t cause this. Don’t beat yourself up for anything that you didn’t do in the past, thinking it might have helped her. Usually when severe mental illness comes on, it isn’t recognized at first as even with hallucinations and delusions, things still sound sort of possible. It is common for the ill person to see family members as enemies when the illness comes on strong. That is heartbreaking, hearing the horrible things being said that you KNOW didn’t occur. With schizophrenia, it is usually not diagnosed right off the bat, and her therapists might not be aware of her hallucinations and delusions. Sometimes what the ill person says makes enough sense for it not to be alarming to others.
I suggest you contact the nearest NAMI and try to go to support groups and especially take the family-to-family course. You will learn so much that will be helpful in the future. There is a book called “I’m Not Sick, I Don’t Need Help” which explains why those who have severe mental illness won’t get treated or take medicine. They truly don’t see that they are ill and they don’t see a need for meds. It is called anosognosia, and is a very scary concept to have to learn about. I suggest reading that book, I had to read it three times to figure out how to use the communication method in it. Come back here to read stories and look for tips. I struggled for three years with my daughter’s psychosis before the was successfully on a medication that worked. I called them the hell years.
This illness very badly affects life, the whole family and is a lifelong struggle to manage. You must maintain hope and take things one step at a time.
Thank you. I will definitely get that book. It’s been a nightmare and this is only the beginning. Wishing our other 2 daughters would understand that she is very sick instead of getting so angry at their sister. They are taking everything so personal. I can’t imagine feeling like there is nobody in my family I could trust.
I’ll second what @oldladyblue said and state the obvious that EMDR therapy seems inappropriate for her case. Most people with SZ and SZA experience disfunction in eye tracking or saccade as a “feature” of the disease(s).
This may lead the practitioner to believe they are helping rather than aggravating symptoms. (For those unfamiliar with EMDR therapy, it usually involves practitioners guiding a subject through eye movements as a means of working through past traumas)
As a note of hope, I similarly had a year of psychotherapy only culminating in a psychotic break and hospitalization. False delusions of past abuse were a feature of that break, but hospitalization ultimately led eventually to neuroleptic treatment. My history differs as my therapist referred me to a psychiatrist after our first session, and my choice of psychotherapy-only treatment had more to do with the competence and bedside manner of the psychiatrist than that of the psychologist.
In the end, I pragmatically adopted an agnostic attitude toward delusions and abuse, telling myself the content or reality of past events was unknowable and it was more important how I adapted to my situation. My understanding is EMDR has a similar bent in theory, although what happens in practice depends on the skill of the practitioner (and luck). I’ve had what many say is a remarkable recovery due to insights found in therapy (and neuroleptics of course). I’m an advocate of LEAP methods mentioned by @oldladyblue based on my insights of my SZA diagnosis and understanding of the wants and needs of sufferers.
CURESZ Foundation is a wonderful small nonprofit in Cincinnati focused on schizophrenia. There’s a wealth of information and also online support group opportunities. https://curesz.org/
My daughter also has delusions that we are/were trying to harm her, and the delusions about abuse that never happened. It is such an awful thing to experience. One time when she was feeling better and I asked her about it, she said, “It’s the only way to explain how awful my brain feels.” So I’m trying not to take it personally but I fail at that most of the time lol, but look at it as a symptom of the illness. It does break my heart that she seems to remember none of the good times before her first psychotic break. I’m hoping as she heals maybe some of those memories will come back.
You must get your daughter ASAP to a First Episode and Early Psychosis Program at a major hospital with a research psychiatry department. Do not delay. Early treatment by knowledgeable supportive experts is essential in getting help to this young woman.
Hi, this is an old post, so I am unsure if I will be of any help here. However, I wonder if you have considered talking to your daughter’s therapist? I am not sure how the law works in the US, however, where I am, the therapist can not give you any information about your daughter’s treatment without her permission, but she can and should listen to what you are saying. Perhaps it is worth mentioning your concerns, plus the medical history from your husband’s side. Experience therapists should be alarmed when hearing someone mention that “the voice is telling her to kill her father in his sleep” and that this person thinks that her family is conspiring against her.
Anyway, hope things will get better.