Hello everyone,
Recently discovered this forum and it absolutely amazing to read everyones stories. My brother was diagnosed with schizoaffective disorder and has been in and out of the hospital ( around 5-6 stays) since around 2015. His last time he relapsed was around August 2016. Each time he was at the hospital the recovery times took longer ( the first time he was stable after only a couple days to a week!) but eventually he became relatively stable and gets released and we have my brother back again. This time however has shown minimal improvements and we were told that his “delusions” were fixed and to bring him home. It is now many months (9 months to be exact) later and he has definitely improved but still has a long way to go. My question is what is the longest it has taken for your family members to become stable (showing little to no symptoms)? Is this normal? He has little insight of his illness and im hoping it improves when he becomes better. He has no problem taking his medication so that isn’t the issue. Should I pressure for an increase in dosage or change of medication to the doctor. Has any family members been in my situation and don’t mind sharing their experiences on what they did? I love my brother very much and its disheartening to see him unstable…im sure you can relate…any insight would be greatly appreciate.
Is the doc being made fully aware of the symptoms and the fact they have persisted or increased? If so, it seems to me that a med increase or change should have been done months and months ago. Frequent and consistent communication with the doc about what you all are seeing and experiencing is key to getting the symptoms under control. Even if your loved one isn’t sharing this information on his or her own, you can. You don’t need a release to share info. You just need a release to get info.
I’m sorry this has been going on so long for you all. It’ll get better.
I’m sure you have heard this but everyone is different. As long as he continues the medication, he should improve steadily. His being compliant is HUGE and a very positive point.
Write the symptoms that you are still seeing and share with his Pdoc. I have read the delusions are the last to go and it is certainly the case my our son.
God bless you as you love and care for your family member.
I agree with the other replies as well. Everyone is very different, and positive progress can be very slow, but if the prescribing doctor is not fully aware of all of the day to day symptoms that are presenting, nothing will likely change. In some cases doctors take a very conservative approach and stop working towards improvement once the patient is no longer a threat to himself or others. I was fortunate enough to have a doctor that was aggressive in trying to get my son sane as opposed to just “safe”. it took a long while and many different trials (and combinations) of medications but he stayed with it, and he communicated really well with me and I with him, sometimes daily and at least weekly and I kept notes. Of course I had guardianship of my son so I was allowed the open communication. Sometimes the HIPPA laws can get in the way of well meaning family just trying to help. My best to you and your brother.
Guudy, Even though you are new to this, I have question to ask you. How did it come about that your brother was diagnosed and gotten into treatment? Did he accept that he was delusional etc. I am just asking for a brief answer. You have my empathy. (I wonder what “fixed delusions” means - did they explain that?) Your connection as a brother is tough - you have all of the concern and stress and probably no authority. Well, thank you, I wish you a good outcome and health.
Fixed delusions means that the delusions are set & they are likely to not go away.
I don’t like that term. For one, I hope my son can recover from most, if not all, of his current delusions. He’s done it before - so why not now?
Second, I believe the brain is a lot more fluid than that. They’ve proven it’s way more plastic than they ever thought in cases of brain injury, so why not mental illness?
Finally, calling anything fixed is kind of like giving up. It’s lazy to ever give up on anything.
My son’s delusions seem to constantly evolve, and ebb & flow - for the time being anyway. He has some common themes, but I don’t know if that counts as fixed - or how long it takes them to be fixed.
I’m with you on that, I think “fixed” means the Doctors have given up to some degree. If my son’s doctor said that I would find a different doctor.
Thanks for the reply. The only hurdle in talking to the Doctor is that my brother wants everything to be private and doesn’t like our family talking to his doctor…should I give a note to the receptionist to give to the Doctor to report what I see? Any other suggestions on how to communicate to the doctor?
He was first diagnosed when he was around 19 with drug induced psychosis. Then my dad told me recently he was diagnosed with schizoaffective disorder this past visit…and no he does not accept he is delusional when I have attempted to ask him. But I have this knack that he has some insight but he doesn’t want to share it…I think its part of the stigma with this illness that they are ashamed. I try my best to show him compassion and constantly remind him that he can be open to me and I will never judge him.
Notes to the doctor are good. Sometimes, I drop them off a day ahead of time.
For people reading this right now…what is the longest it has taken for your loved ones to become stable/show little to no symptoms? Did they steadily get better while staying on the same regiment of medication or was there a drastic change that made them feel better (like changing medication? Is it possible to become steadily and steadily better after 9 months already? I understand that everyone is different but this time it is very odd because it is taking very long.I would appreciate any anecdotes regarding this. Thank for all your wonderful insights I truly appreciate it and wish the best for all of our loved ones.
The day ahead of time is a very good idea. Thank you very much for the suggestion.
Also I feel like my brother is a very good actor in front of the doctor and im worried the doctor doesn’t have the chance to grasp the true magnitude of his illness. Hopefully note works…
Yes! -write to the doctor often and tell him or her everything that you observe and behaviors you know about your brother. That is an option. Some doctors are wise enough to see through the facade that some patients can manufacture in front of them, others cannot or will not. Mental illness does not mean the patients are not very intelligent even sometimes very manipulative. My sister is like that and she is schizoaffective, She will lie often unless somebody sets her straight and then she will either cave in or get extremely angry and isolate. You never know. Be honest when you write to the doctor and write as often as new information arises. It may help.
As for a time line for recovery…I wish there was a guideline we could count on, but there is not… I have heard some patients getting fairly stable in just a few days of medication and others (like my own son) it took almost a year before I started seeing real lasting stability and it was a very slow gradual improvement. It also matters how compliant they are on their meds and if the dosages and combination of drugs is correct…if your brother is very private he may or may not take his meds appropriately, unless someone is watching him, it would be hard to know for sure.
Some patients also lie or gloss over things when they see their doctor because in a weird way they want to tell the doctor what they think he or she wants to hear - so as not to disappoint them.
My son has done that in the past with his first psychiatrist that he saw for almost 10 years.
Without someone on the “outside” reporting what’s really happening with our loved ones, docs probs won’t have honest info to work with and base their decisions on.
Another communication option that has worked well for me is email. Email addresses are easy to get/find, they don’t require a middle man to make sure the messages gets through to the right person, and they create a permanent record. I’ve used them to get info to multiple psychs and therapists.
I agree everyone is different, my son was hospitalized for 10 days the next time it was 5 and compliance with his meds is thankfully continuing. His doc is conservative and tries to do the minimum dose on everything so the titration takes time- it took up to one year to get his meds straight. Also just know that even the weather can affect his body differently. I notice changes around the full moon and this spring has been hard with his voices returning for no apparent reason, but then left thank goodness within a week. It is like a roller coaster up and down . Do discuss with the doc all his symptoms and encourage your son t be honest about what is working and what isn’t - this is the hardest thing for my son to do because " I don’t want anyone to think I am crazy" but if he doesn’t tell the doctors are working blind - good luck
In 8 years we have not reached the no symptom level. He was what I would call stable on Abilify…still had delusions but would check them with others and was coping. Not like you and I would cope, but he had days of contentment. Then meds were changed and a the worse downward spiral he has ever had began and still persists. He now has no insight and is non compliant and has a very dark outlook.
I guess what I am saying is don’t look just to meds to solve the problem. The illness is chronic and at times acute. Meds help and if he is med compliant take that as a big plus. You said he has improved. That is good. Hold on to that.
Are the delusions annoying? You betcha. We have to learn how to manage our response to them though. If YOUR goal for him is little to no symptoms you may be setting yourself up for failure and unknowingly putting pressure on him. Stress you will find increases delusions. Continue to keep his doctor informed of what you see, and maybe find someone for you to work with to learn coping skills. Also if he has any insight now would be a good time to work out a plan for the day he may lose the insight.
This is a rough journey for you and your brother. You are showing him love he may not always appreciate, but good for you.
A major psychotic episode is a brain trauma, and it takes time to heal. Our son has had two psychotic breaks – the first one, that lead to his diagnosis, and another one that occurred because his anti-psychotic had been tapered so low (Abilify 2 mg) – because he was doing so well – that he was probably getting no protection, and then when he was faced with a situation with a lot of new stress and excitement and stimulus, he ramped up and ended up hospitalized for 12 days. Anyway, that second episode was really rough – and I think it took two years for him to really seem like himself again. He re-enrolled in college and started with just one class, then two, and then eventually a full load, but it was slow and hard. He still has some delusional thinking – which he recognizes – but he got his Bachelors degree and is hoping to go to grad school. So hang in there.