I don’t normally post on these forums because I’m diagnosed, not a caregiver, and therefore really belong on the patient forum. I’ve been wanting to come over here and tell you guys my experience for a long time. I had bipolar from age 15 to age 30, at which point I developed schizophrenic symptoms (delusions, paranoia, visual and auditory hallucinations). I went completely out of my mind for a period of about two years. I was already seeing a psychiatrist for my bipolar however, and was therefore always 100% med compliant… but even so, I didn’t start improving until I had been sick for a full two years.
It’s been six years since my diagnosis changed from bipolar to schizoaffective (and when I started hearing voices and believing things that weren’t true) and I no longer suffer from any delusions or paranoia. I still hear and see things, but I never suspect my family of anything they aren’t doing, and I no longer cause them heartache.
If your spouse has only had it for a few years, there’s a good chance he will recover partially within the first 5-10 years of the disease. The most important thing by far is for him to become med compliant and start trying different antipsychotic medications. It took me a year and a half and experience with five different antipsychotic medications before landing on one that effectively removed the delusions and paranoia without giving me horrible side effects.
You’ve got to find a way to get him to take medications or he’s going to be lost. I don’t know how to do this because it really wasn’t necessary for me… I always took my meds. If you can get him to take a 1 month or 3 month injection, and it gives him some relief, he might be able to take stock of his life and realize that he feels better on the med than off it. What helped me realize I was out of it (I was iffy about whether I was sick or not for the first year) was visiting this forum’s sister forum, the diagnosed forum. There I would post my concerns and the other members would help me with a process called “reality checking.” They could tell me if I was paranoid or delusional and I would listen, as some of them have been dealing with a diagnosis for over 15 years. Now I post on the diagnosed forum every single day and it keeps me level headed and stable. I’m on federal disability and can take care of myself, and my relationship with my family is back to where it was before this all started.
They say delusions and paranoia are hard to remove, but in the end Zyprexa helped me shake them. The problem however is that I can’t recommend the drug because every antipsychotic affects different people in different ways. What works for one person might be ineffective for another. It really varies from person to person. One good example is that Zyprexa tends to cause weight gain in most people who take it, but I’ve never gained a pound on it. You just need to want to get better, and find a good psychiatrist and just agree to spend the next year trying each medicine in turn until you find one that works.
During my first two years with the disease I was cast out of my home and ended up in jail, where I was put into solitary confinement 24/7 for 5 months straight. They did not give me my medications despite my asking and I was tortured by voices and visions the entire time. My point is, sometimes it gets worse before it gets better. Coming out of that place I was willing to do anything to avoid ending up there again… and then I found the wonderful diagnosed forum at forum.schizophrenia.com and things began turning around. I have several buddies over there that keep me on the straight and narrow.
I feel like I’m rambling, I don’t know if this is helping, it’s such a rough disease. There is hope for recovery though, it’s not curable but it’s treatable. I just wanted my family back, that was my motivation for admitting that I was sick and needed help.
Best of luck, and yeah the Ted Talk that was mentioned above is a great one, there’s also one by a fantastic woman named Elyn Saks, one by a woman named Eleanor Longden, and another by Cecilia McGough. These were some of the first videos I watched when I got into the process of recovery.
I wish you guys the best. Please feel free to use the forum if it helps, you’re definitely not alone. Remember that this diagnosis does not necessarily mean that you will have to be a caregiver for life. That was something my mother was unwilling to do, which is totally acceptable. Nowadays she doesn’t have to be thanks to my recovery. I am so glad to have a healthy relationship with her again.