Family and Caregiver Schizophrenia Discussion Forum

How to have hope with a chronic illness?

Hi Everyone,

I’m really new to the chronic illness community. It’s still sinking in with me that my husband has a chronic illness, and I feel completely lost and overwhelmed right now. I apologize in advance for all the wordvomit in this post. I’ll put a tl:dr at the end. I am really uncertain what I am even asking for here. I know other people have it much worse than I/we/he does, and I am trying my best but it never seems like enough.

Background:
My husband, “Thomas,” and I have known each other for 11 years, and been married for almost 3 years. He has had a psychiatric diagnosis for as long as I have known him. He was hospitalized multiple times before he got to college (before I met him), diagnosed with bipolar type II, but was off his medication when I met him at college. In college, we shared many classes together, and bonded over a love of literature and snarky humor. He was brilliant, creative, artsy, antisocial, and weird. He was phenomenal in class- when he showed up, but had a tendency to skip class and climb trees. He managed to graduate, but barely. We stayed friends, and I went to grad school. He struggled for a few years, tried a few jobs, moved back and forth across the country, but ultimately moved home to stabilize. He had been working as a school janitor for about 2 years when we started dating. While we were dating, he had intense moods and bouts of depression, but seemed like he was more or less on an upward trend; we got his credit card debt paid off, he quit his job as a janitor and started working a job he was passionate about. Doing meaningful work seemed to make a huge difference for his outlook, and we started planning for the future. We started talking about marriage, and he wanted to go to graduate school to further his professional ability.

I married him knowing he had mental health trouble, but I thought we could handle it together. Depression and anxiety run strong in my family, and I had seen the damage that could be done to an unsupported person, as well as how different dealing with mental illness with support could be. I did not have delusions of “saving” him somehow, but I did honestly think we could heal together. So recognizing that his illness is chronic already feels like a defeat --like things will always be bad, no matter what. I’m having to redefine “healing” and I don’t feel hopeful.

We got married in 2016, and moved to New York for him to go to graduate school. It was a terrible idea for a multitude of reasons, but especially in retrospect, we can look back and see how unsupported and unprepared we were. New York was too expensive for us, it was dangerously far away from both of our families or any support network, and our graduate institution was at best incompetent, but more likely willfully negligent and corrupt regarding supporting its all of its students, but especially students with disabilities.

While we were there, Thomas’ mental health rapidly degraded. He stopped attending classes, had angry and increasingly violent outbursts, became paranoid, and had delusions.For example, we usually shared household tasks and responsibilities. When he slipped into his dark phases, he would stop doing his share of the chores, and bristled and yell if I asked him to do something. This usually led to me just doing all of the household maintenance. I worked to support us both, and the school required that he begin seeing a counselor and psychiatrist before returning to class.

At first, it seemed like enough to turn things around. Thomas started taking medication again for the first time in years and was excited to find that Latuda significantly helped and didn’t dope him up like the meds in the hospital did. He still struggled-- our restricted finances meant that we could not actually afford the Latuda prescription, but instead were supplied with sample packs of 60mg tablets that we split into thirds. The irregular dosing was obviously reflected in his behavior and mood, but it was notably better than nothing. Having fulfilled the school’s requirements, Thomas reported his status and requested to be permitted to continue working towards his degree. Instead of allowing him to return to class, the school sent him a letter stating that he was officially being academically removed until he had “overcome” his diagnosis of bipolar type II. In addition to a major blow to his hopes of finishing his degree, this triggered a bout of major depression, accompanied by rage, paranoia, and delusions. He was never violent with me, but he threw things, broke things, hurt himself, yelled, and accused me of terrible things that his paranoia was suggesting.

His being kicked out of school meant that homelessness was imminent for us unless we could move quickly, and we could not afford to stay in New York. We left only with what we could fit in our car, and I moved us temporarily to my mother’s house in Georgia. We were uninsured, his medication was erratic, and he was miserable. With a lot of hard work, within 3 months we both had jobs, health insurance, and our own apartment. Things have definitely, definitely improved. Money is still very tight. He has had two severe breakdowns since we’ve been here, and his outbursts seem rarer, but more violent. Perhaps most importantly, he has started seeing a proper psychiatrist again. His new psychiatrist is great, but she has suggested that he is not bipolar type II, but is schizophrenic. This was initially scary, but not especially surprising given his tendency towards delusions/hallucinations, and his relative lack of a manic station. He had been identified as having schizotypal disorder as a teen, but nothing had been done with that diagnosis since then. His medications were adjusted, and seem to be on point. He’s doing better than he has in years.

HOWEVER…one of the biggest struggles is his job. He loves his work. He really truly does. We both work with individuals with disabilities-- work we have done for years-- and we both are very committed to advocacy and support for individuals with disabilities. I am the main breadwinner, and my wage largely supports us in terms of bills, savings, and financial goals. Thomas has a low-risk but strenuous job (think Support Personnel for individuals with disabilities) that he enjoys, but it is hard work. He does not get paid very much, but gets insurance through his job (though we could get insurance through mine if he becomes unemployed) and his job gives him a regular schedule and a community. He is at risk for losing his job at this point due to absences. He will frequently miss at least one day of work for weeks at a time when he is struggling. His boss is very understanding, and he’s phenomenal at what he does, so they are not looking for reasons to fire him, but he also needs to be reliable.

Our relationship is loving, but I feel strained. I feel like I am his mother and therapist. This makes me deeply uncomfortable because I have ended previous relationships firmly because my partners expected me to mother them. Obviously, this is a different situation, but this feels is familiar in a bad way. The one-sidedness, the lions share of responsibility, is not what I wanted for our marriage. I am also tired. I’m so, so tired. And facing the realization that this is a chronic illness-- that he will probably always need care, that his regular job is not a given, that I will likely always need to be primary caregiver and breadwinner for us, especially if (IF, IF, IF) we have children. I can feel myself wearing down and I have no idea what to do. Any time I have tried to talk to my spouse about my feelings, it turns into a conversation about him, where he either feels guilty and I have to reassure him, or he gets angry. Some of our support (my mother, his parents) know that he has struggled with his mental health, but none of them know that he has been diagnosed as schizophrenic. I feel very isolated and don’t know what to do except for take it day to day.

TL:DR – husband is struggling with mental illness, I feel isolated and alone, not sure how to move forward to be able to deal with it as a chronic illness with hope.

Wow…One day at a time is all we can handle, I would suggest you seek advice from a support group. You are a brave individual. Sounds like you love your partner deeply and willing to stay for the long hall. Medication and therapy are essential to both of you. Take care AnnieNorCal

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“His medications were adjusted, and seem to be on point. He’s doing better than he has in years.”

Welcome to this forum @laughingsteps . I hope you can find comfort here knowing that many people are caregivers, as you are, and we somehow manage to get by and support our loved ones.

I am the sole breadwinner in my household. My daughter moved back in 3 years ago when she became schizophrenic and was unmedicated for the greater part of the last three years. She is on a medicine that works now and our home life has calmed down from screaming or isolating pretty much 24/7 to a “normal” life where she even got a job (basically as a janitor) part time.

I also support my husband who has turned into a serious alcoholic in the last 3 years, although he was a drinker all of his life. I used to drink, and have pretty much quit totally after dealing with the two of them for the past 3 years.

Support groups helped me, NAMI is a great place for face to face meetings, so is Al-anon. This forum is a blessing. Facebook has a few groups for those who are parents to schizophrenics. You could possibly benefit from other caregivers sharing their stories.

I was urged to stop caring for my daughter and my husband over and over, by well meaning friends and relatives (who have no reality on either severe mental illness or alcoholic delusions) however, I love them both, and we are all doing the best we can. I have changed my job to earn more, started renting out rooms in my home for extra money (separate back apartment), and built a studio for my daughter to keep the noise down when she was screaming a lot (that is over now). I am so tired at times I wonder how I keep doing everything… I feel your tiredness too, I get it, and I understand.

However, if your husband is now doing better than he has in years… perhaps the future years can be very good ones. Yes, with you as the caregiver… most likely.

You CAN do it, if you choose to. I don’t know about having children… that is a decision only you can make. I know many single old ladies (my age) who never married and never had kids, and they are happy. Most of them are “rich” by comparison to how poor I am after raising 4 kids and now caring for two basically disabled adults… I know several couples who chose not to have kids, my sister is one of them, 35 years with her husband, happy, settled, and again “rich” by comparison to me. Sometimes I wish I’d never had kids, but I did, and that wish passes. My sons live closeby and never see me (well once every three months or so, usually to ask for money…)

If your spouse is schizophrenic, you should read up on the condition, serious conversations are few and far between sometimes for those stricken. My daughter’s only serious conversations recently were to finally spit out “what happens to me when you die?”. So I am setting up future care for her: life insurance, a trust to keep the rental house going and her stably living here, etc.

You have a lot to deal with, but understanding that basically your husband is disabled by one of the cruelest mental illnesses that exist and you are a caregiver has many, many levels to understand and work out for yourself.

Keep coming here, post and read, and be kind to yourself, above all, be kind to yourself. I’m sure you are doing the best you can.

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