My husband (29 years old) was just diagnosed. He has had symptoms for about 5 years now but it’s just getting worse everyday. We are in the middle of our 3rd hospitalization in the past 4 months. He was on abilfy but refused to take the correct dosage. Now he is getting the invega shot but hates it. And honestly, looking at him it’s like he’s not even there. He’s just a warm body with no soul it feels like. We have 3 young children together, all under 5 years old. Right now they don’t really have any idea what’s going on, I’m scared for the future. Does it get better? Does the medication help? Does it ever go back to “normal”? I’m at such a loss, I don’t know what to do. I’m tired of the fighting, the emotional abuse, the constant state of being paranoid. Is there anything I can do to help? Any advice is appreciated.
a tired and hopeless mom.
I don’t think I have a real right to answer you since my only experience with SZ involves a close friend who doesn’t even live nearby. But I wanted to send tell you how much I feel for you and to give you some hope. It must be so hard to deal with symptoms when you are trying to raise a family and maintain a marriage. The fact that your husband has been willing to take any medication at all is already a good sign. My friend refuses both. From what I have read and others will confirm, it can take a while trying out different meds to get the right mix and the right dosage. Try not to give up hope. This is a cruel and serious disease but many have managed to achieve something close to normalcy if they get properly treated. Check out this website and Youtube channel: https://www.livingwellwithschizophrenia.org/
Welcome. My recovery is a relatively rare best case scenario, where I eventually returned to college, got a degree, had a professional career, social standing, relationships, and established life and financial independence. Despite these achievements, I’d never say life ever got back to “normal”. About the best you can hope for is a near normal or Next To Normal (title of a Pulitzer Prize winning play on a family’s struggles with a parent with mental illness).
Per your questions, on average it does get better and medication helps. But the tyranny of averages is some fall far below, and well above those averages. Whether this is because caregivers and the diagnosed get better at coping, treatments are successful, the disease moderates over time or a combination of these is unclear. What I know for certain is recovery is hard, and it takes hard work. Medical and social support systems can be maddening to navigate. Stigma and inequitable financial burdens seem inescapable. And symptom and medication management, and the progression of the disease can be tough.
I’m not going to sugar coat it, 5 years of untreated symptoms and 3 hospitalizations in 4 months isn’t a good sign. Generally early intervention and good response to treatment(s) correlate to better outcomes. Being put on an injectable medication isn’t favorable either (last I checked there’s no injectable version of Abilify). It means he’s non-compliant, may question his diagnosis and may develop anasognosia— lack of insight that he has a disease.
What can you do to help? Educate yourself, get support, learn to be more supportive and advocate on your own and on your husband’s behalf. NAMI can be a good starting place for these beyond friends and family and professionals. Books and online support can be helpful too.
Give it more time, the side effects will lighten up over time. Many of our family members have their most difficult years in their late 20’s, early 30’s. You want to give the injection more time. Meds alone aren’t the answer, he will also need to work with therapists to help him be a member of his own family.
This book helps: I Am Not Sick, I Don’t Need Help! How to Help Someone Accept Treatment. It might be that a person becomes compliant with meds when they see the terrors of psychosis being worse than the side effects of the drugs which, admittedly, can be hard to take.
@Jros Welcome to the club that absolutely none of us wanted to join. I don’t really have any advice for you. My daughter had her first psychotic break in October 22 so this is all still really new to us. I just wanted to let you know that you’re not alone in feeling overwhelmed and confused. I know I find comfort in knowing that my feelings are valid. My best advice is to take it one day at a time and focus only on what you can control. None of us know what the future will bring. Stay strong Mama. You’ve got this.