Family and Caregiver Schizophrenia Discussion Forum

New to this and looking for any help/advice!

Hi all! I’m new to this and just wanted to get any sort of help/advice on how to deal with this disorder day to day, medication advice, etc. my boyfriend of 7 years (we’ve lived together this time) was diagnosed a year and a half ago. He suffered from symptoms for a few years prior to his diagnosis especially paranoia and the safety of me and his family. Diagnosis didn’t go great (does it ever?) and involved police and a lengthy hospitalization. Since he has been released, he has been on the Invega injection once a month. I don’t know the mg. He has improved significantly! But still has issues every couple months or so and it can vary for how long. He often breaks in and out of it for example, he could be fine for weeks and then symptoms will spark up and either last consistently or it will last for 1-2 days until he snaps out of it and basically crashes from exhaustion. Once he awakes from his crash it will often start again and it will be on and off every other day or so just like that. Otherwise he is generally fine and can go long periods. Nothing has changed with his medication since he started it. He hasn’t missed any either. When he isn’t having problems, he is often pretty lethargic. He’s not one to be overly motivated normally and he has lazy tendencies but it’s more amplified sometimes. It can be difficult for him to stay awake at times. When he is having problems he’s the pole opposite. Difficultly sleeping, very restless and overly concerned about the dumbest things he normally would never care about. His doctors are aware of the cycles he goes through and haven’t offered much help. They think it may be stress induced or when something changes in his every day routine but right now he barely has an every day routine and when he’s healthy he’s generally a lower stress person. They did prescribe him risperidone (the same thing he takes but in pill form) to take as needed for a boost when he’s struggling but of course he won’t take it when he’s having problems because he thinks he’s fine. I’ve had conversations with him when he is healthy about how we should handle it and he is now at the point where he admits he has acted strangely in the past and says he’ll take the pills next time, but when it happens he insists he doesn’t need them. He’s on a decent understanding when he’s healthy but not when he’s unhealthy. Does anybody have any suggestions? Is the medicine not effective enough? I want to help him get his life back and I really don’t know what the right things are to do that and what I should or shouldn’t push for from the doctors. I love that he gets a shot since he isn’t a person who’s ever had to take medication or pills so the shot once a month is very convenient for us but I’m very concerned about the cycles he continues to go in every couple months or so.
I’m only a year and a half into this diagnosis and I have a lot of faith for our future together but I’m also scared. Am I being realistic about having a life with someone suffering from this? I know every person is different but being in our late 20s I want to figure this out the best we can so we can move forward. Thanks to anyone who actually read this all. I appreciate it more than you’ll know. Thanks and much love!

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Welcome to the forum. I did read your whole post and thank you very much for sharing. My heart goes out to you and your boyfriend. I don’t know a lot about the Invega shot, years ago when my son started treatment for his schizophrenia he was on the Invega pills for a time and actually took Risperdal before that, it took him maybe a total of 6 or 8 medicine changes before we ended up clozapine which actually got rid of the voices and delusions for him. It was a very long process (about 3 years) before we saw real improvements. I was fortunate I could get my son to take the pills even though I had to hand them to him and watch him take them for years until he finally took responsibility himself.

I was sad to hear that he didn’t get any productive responses from his doctors when they heard about his episodes. That is not right. I’m not sure if it is possible for you to get a second opinion from someone else and let them know that your boyfriend shouldn’t have to go through this as “the norm”.

I can say that the illness, if it is schizophrenia, can make a person very listless and lacking motivation. I have not seen it make my son have sleeplessness or overly paranoid ideals, those symptoms sound like they are components of the illness itself. Perhaps there are other effective meds that offer a once a month shot that could be discussed with your boyfriend’s doctor? Just a thought.

The part of your post that explained how when he is lucid he is compliant and when he more ill he becomes non compliant because he doesn’t recognize his illness then. That is a real thing that many people on this forum have to deal with it is called “Anosognosia”.

There is a book available on Amazon or in libraries called “I’m Not Sick, I Don’t Need Help” by Dr. Xavier Amador that addresses this problem and ways to approach it, and many people on this forum have found it helpful -here is a link – I Am Not Sick, I Don't Need Help! How to Help Someone Accept Treatment - 20th Anniversary Edition: Xavier Amador: 9780985206703: Amazon.com: Books

I am glad to hear that when your boyfriend is more lucid he is willing to work on his wellness, that is a real plus a lot of people don’t see in their loved ones. One other thing that might affect his medication through out the month is if he is drinking a lot of caffeine products (coffee, tea, pop) or if he smokes more than usual (if he smokes) or if he partakes in recreational drugs or alcohol at any time. All of these things can change how the medication works within him.

You have very important decisions to make going forward. They are tough decisions. Only you can make them. Getting all the facts is a good start. Knowing for sure whether your boyfriend will be a consistently active participant in his future wellness is key factor to consider. Another consideration is that if children are involved now or in the future will you always be comfortable with your boyfriend in all of his “states of mind” whatever they are, with children at all ages? Just another thought if it applies.
You have invested a long time in the relationship, and personally I hope he gets the right medication from the right doctor and takes it correctly and gets much much better without any uncomfortable episodes like he’s been having. I would love for that to be the outcome. However if he has too many issues with taking prescribed meds that can possibly get him more well or if he is by chance doing anything regularly that undermines his wellness, and things stay chaotic or uncertain for you week after week, you may have to decide what is best for you, as you said in your post you are very young and this is a life long illness it can (in many cases) get much better with concentrated and consistent treatment and efforts but there is no cure. That’s the truth.

I don’t know if any of my reply will be helpful to you, it comes from my heart and I definitely mean well.
Feel free to read through stories here, Sometimes they offer ideas you might not have thought of or they may at least let you know you are not alone, not by a long shot.
I truly wish you and your boyfriend the very best outcome possible going forward.

One last resource if you haven’t heard of it is NAMI (the National Alliance on Mental Illness -they are a wealth of information, support groups, educational classes, they are amazing and can really often answer questions you might have or lead you to resources where you live. Here’s the link Support & Education | NAMI: National Alliance on Mental Illness Stay well, and stay in touch. Best wishes, Catherine >>>PS: I thought of one more thing that helped me tremendously while caring for my son, I ended up getting counseling for myself with a therapist so I had an impartial person to talk over my fears and anxieties concerning my son and his illness and my role in his care. Even though my son is stable now and doing well I stay with the counseling it has become a valuable “grounding” wellness tool for me.

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Hello @Kristy7071 and welcome to this forum. It is very good that you found it, the posts here from the past that you can surf through will be very valuable. You can find many from those with a partner who has severe mental illness.

The post from @Catherine has some very good tips for you, I agree with all of them. She has successfully navigated very muddy waters in caring for her son.

You are wonderful support for your boyfriend, it must be very tough for you. I want to caution you though, that your boyfriend may never “get his life back”. Usually, going forward, it is a “new” life that he will progress into while always struggling with a lifelong severe mental illness that usually requires never going off the medication. He may always need a caregiver, or not. It is proper for you to evaluate whether you can give of yourself for the rest of your life. My daughter, though doing well, could probably not have any significantly nice way of life without my ongoing daily care. She goes to work daily now, but I drive her there, wash her uniforms and make her lunches. She is slowly recovering more self-responsibility, and she has been on a successful medicine for almost 3 years. I had to decide to be her caregiver, and at first I totally resented it. That resentment was awful for me to try and conquer, I still feel ashamed of that emotion. I am lucky that her treatment works well and so the resentment faded as she moved into her new way of life and regained some self-sufficiency.

I wish you the best in this difficult time.

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I agree with @oldladyblue 100% , same with my son, He is definitely much much better than when we started but I still have to do the heavy lifting when it comes to organizing bills, making meals, shopping, and he has not been able to handle gainful employment thus far, the stress is just too much. He can however interact with me normally, and he does make a very good effort to help with everything around the house, he does chores very willingly and without prodding and he is getting better at cooking and shopping and making his own appointments. He does get confused sometimes on the order of steps to complete a task, this is actually something more recent so I have to figure out what’s going on there. He doesn’t want to socialize and gets angry if I push him to do so. All things considered he is very happy and I am just happy to know he is content and that I don’t have to have a “death grip” on his wellness like I once did. I have more time for me these days. My son was diagnosed at 21, he began to recover significantly at age 25 and today he is 37. I am 61. I am okay with helping him the rest of my days and working on some kind of safety net for after I am gone. When I say this disease is a lifelong commitment, it truly is. I also continue to wish the very best going forward. Take care.

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@Catherine and @oldladyblue thank you for your responses. I appreciate it. I do know he will need medication for the rest of his life and I’m so grateful that he has consistently gone to get his shot monthly since his diagnosis. He does surprise me in ways I never thought he would. Pills definitely are significantly harder for him to wrap his head around. It’s difficult to get him to even take Tylenol for a headache! He was diagnosed at 27 so the doctors seemed to have higher hopes due to him being younger - I hope there is some truth behind that. I don’t expect him to ever be cured but I’d love for him to be compliant and have trust in me to recognize when he isn’t doing good and he’s not able to see it. I feel like I’ve gone through so many bad years prior to diagnosis with him that I am just not at the point to give up on our relationship. I know it seems crazy to a lot of people that I’m choosing to stay by him for now, but I do feel that I need to do everything I can before potentially moving on. It’s a lot of pressure too. He lives in my state and has only ever had me here. His family all live across the country. He has free and good health insurance and care where we are and wouldn’t as much if he moved back with his family. I do regularly communicate everything with his family of course, but I know if it ever came to me moving on - he would most likely get worse care, not continue care etc. I know ultimately I have to do what is best for me but I’m just not at that point so early into diagnosis to make that decision yet. I have applied for paid family leave which will be very helpful for any appointments I feel I need to attend. Again, although not perfect, he really has surprised me with how he has handled this majority of the time. He knows if he stopped treatment he would lose me and he knows how much hurt I’ve been caused by it all and I think he holds guilt from that. I just wish we could figure out why he has episodes every few months. Do you feel like any change in their day to day routine triggers them? I feel like when he goes to job interviews or gets a new job he tends to have issues again. Or when we visit his family, etc. so I’m not sure if it’s tied to life changes/stress at all? I also wonder if he has bipolar or is schizoaffective. He does get a lot of energy during episodes and is so so restless mentally and physically. I’m not sure how we get to the point where a doctor will consider different diagnoses and/or if that would really even help any. I’ve also read a lot that each episode they have it creates more brain damage essentially and makes it harder for them to come back from it. Any truth to that? It’s so hard to research this topic and studies are so outdated.

Also, thank you for the book recommendation! I am about half way through that book right now and it seems very helpful! Scary and difficult, but helpful. I’m hoping I can better use the techniques recommended in the book but I’m sure it’ll take practice. I do want to find a therapist for myself ASAP, but I’d really like to find one who has decent knowledge on psychotic disorders and that has not been an easy task.

Lastly, congrats on both of your strength and successes in helping your loved ones. It sounds like they are doing much better due to your support.

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I love the love that I can hear in your “voice” for your boyfriend. He is fortunate to have you by his side through this. I read voraciously and I have never read that episodes cause further brain damage. I do know from speaking to a highly regarded psychiatrist here in Ohio that on the onset of a severe mental illness, cognitive and emotional development stop until stability resumes. That may not be much of an issue with your boyfriend if he was already fully grown when the disease began. For my son I think it started when he was about 16 but no one caught it until he was 21 because he was also using drugs, so the drugs were blamed for his behaviors. Anyway, all through his 20’s I had an unruly teenager on my hands (or so it seemed) Now in his 30’s he seems like normal maturity. I thought that was an interesting tidbit to share.

The job thing can be a real stumbling block for many people especially early on in their attempt at recovery. I would suggest that (if he hasn’t already done it ) your boyfriend at least apply for Social Security disability (If you’re in the states) and if he has been unable to maintain full time work for over a year. It will take the stress and pressure off as far as being able to provide some steady money for bills each month and allow for him to fully focus on his wellness and all things that support that. Also the process of getting Social Security Disability will go so much faster with a qualified Social Security Attorney and it costs you nothing out of pocket. You can only hire them after you have received your first denial letter which typically everyone does and in most cases it’s merely a delaying tactic on the part of Social Security.

Later when he has had some long term wellness Social Security will allow for a trial work period of up to a year where you can see if the work can be tolerated and during that time you lose no benefits and if you can’t handle it you can just quit and go back to working on the health and try again the next year or whenever the time is right.

I still think it is possible that he needs to be evaluated by somebody else to make sure he has been diagnosed as accurately as possible. It sounds like there are some doubts there.

When he is really restless mentally and physically is it possible for him to put on some music he likes with headphones or something and go for a walk or run or something? I know that helps me when I feel that way. My only diagnosis so far is PTSD…still it has its ups and downs too.

Thanks for sharing, let us know how things progress, someone is always here sooner or later…lol

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