Family and Caregiver Schizophrenia Discussion Forum

Pre medication. The wait for a psychiatrist


#1

My family member is still in the process of diagnosis and should be starting medication in a few weeks. In the meantime it’s been rough. Like tip toe-ing on egg shells. & I know the next few years will be just as hard. He has had a lot of random bursts of anger and it feels like his mind is stuck in a downward spiral of symptoms. But until he is on meds we have to try to keep calm. I have a hard time finding things to talk about. I feel like he has a lot of resentment towards me & is “out of it” most of the time. Most nights I just stay awake letting my anxiety keep me up and alert. Any tips on how to keep sane while going through this? So far I’ve discovered that walks do wonders to refresh a frustrated mind. Also, yoga for tension. I try to bring to mind all the blessings I do have when life feels too much to handle.


#2

Is your family member actively experiencing psychosis? I find it odd that they have not started medication if that’s the case. My daughter’s doctor’s office tried to schedule her out a few weeks when we were first going in for a consultation and when I told them she was experiencing psychosis, they got her in right away. And then once she was seen, she was started on medication that day.


#3

It took about 3 months of regular visits to the psychiatrists before they came to the sz diagnosis with our daughter. As the diagnosis is going to be life changing and affect the person for the rest of their life, it’s so important to make sure the experts get that diagnosis right, and then start the correct treatment.

During this difficult period talk to your family member’s mental health team about prescribing a generic calming medication, like an antihistamine (Promethazine Hydrochloride), or an anti anxiety drug like Lorazapam.

Walking on eggshells, unfortunately this could be the norm, for some of the time anyway, even when your family member is on medication. Just being quiet together is often less stressful than trying to have a conversation, especially if they’re troubled by voices or delusions. We find humour helps, or talk about their favourite singers, movies, books etc, or get them to help you do something, like prepare dinner or plant some flowers, anything to allow them to focus on something real and tangible.


#4

Both his doctor & his therapist know he is actively experiencing psychosis. He dismissed it because he said he thought is was anxiety/ depression. Even so, he should have been given something for that. We’ve really had to push & push for the help. & now that they think it’s schizophrenia they are finally taking it seriously. It’s been a learning process finding the right health care and constantly learning from mistakes.


#5

I was always against taking sleeping pills, but now with my daughter being sick, i make sure i get enough sleep, one way or another
Also, yoga, walks and bike. My partner takes me on the hikes to the mountains.


#6

I’m just the opposite - I want to make sure I can be awake & fully alert in a second if anything happens. I know it’s bad for me & I try to catch up on sleep when things are calm. .

Sleeping pills don’t really work for me anyway, and I’ve tried a bunch of them including natural remedies, OTC meds & prescription. The best thing I can do is just avoid caffeine after noon.


#8

To: slw

One has to sleep. Must sleep!
I am a mother, meaning my daughter would normally out live me. I know that in order to be helping her, i have to stay healthy and sain as long as possible.

On the airplane, they clearly tell you to put your oxygen mask on first before helping babies and whoever


#9

Hi again SLW
:slight_smile:
What you said is really bugging me because i am a lot like that too. But i try to recognize this alertness in myself. I believe it is anxiety and, in any case not a good symptom. Considering i have family members with sz and assuming it runs in my family, i am just trying to avoid any triggers.
Easier said than done.


#10

@Never_to_become - I know what you’re saying. I don’t think I phrased my response correctly.

It’s not that I don’t sleep, and I don’t fault anyone else for what they do, I just don’t like the drugged feeling any type of sleeping pills give me - even benadryl. And, I usually get a hungover feeling the next day. And, the thought of not being able to respond quickly if needed would actually cause me enough stress to prevent me from sleeping if that makes sense.

My personal choice is to change my habits, like limiting my caffeine to early in the day, so that I can get rest without taking anything. And, I try to manage my pain levels, by managing my inflammation levels, so that I don’t wake up as often through the night.

When I push myself too far, I know it - my body will want to nap during the afternoon whether I want it to or not.

I also work a job where I’m on call 24/7, so I’m used to having to jump into action quickly and without notice. And, I work well under stress, as long as the stress isn’t prolonged - I manage it well.

I’m sorry if it sounded like I was saying anything you were doing was wrong. I was just trying to say that I, personally, feel less stressed if I think I’m able to react to a situation at any moment. Whether or not that’s the best thing for my health is up for debate.


#11

:slight_smile: No, this is not an issue at all. I think i was talking mostly to myself, trying to figure out how to take better care of myself


#12

@Never_to_become -

I understand what you mean - I have a high level of anxiety too.

I just recognize that it’s anxiety & move on rather than dwelling on it, and I’ve had so many things happen in my life that I’ve decided I’m kind of psychosis-proof if it’s going to come on due to stress or lack of sleep.

I also know myself enough that I know being unprepared is my biggest stressor. I even have a little superstition about it. Like, if we’re due a hurricane or other big storm, if I over prepare, nothing will happen.

I only wished it worked so well with my son. Instead, I sleep when I can, I make sure I’m able to react when I need to, I have all the critical numbers memorized or close by, I always know where my keys/wallet/phone is, I stay dressed enough so that I’m ready to leave at a moment’s notice.

If my son is sick enough, I pretty much sleep in something comfortable enough, but not so comfortable I’d be embarrassed to go out the house in it.

Again, working in IT, I’m prepared & trained to think of every possible thing that can go wrong & have a contingency plan.

But, I realize not everyone can live like that.

Maybe what I do is crazy, but instead of fighting the impulses because it’s supposed to be unhealthy, I just go with them, hoping I can channel it into something positive.


#13

Very impressive surviving skills!
A lot if what you said sounds way too familiar.


#14

You know, I’ve always wondered if I have just a touch of bipolar, because I can be all over the place - but, if I do, I function well & push through things. I used to be very, very Type A, but have mellowed as I’ve gotten older.

My biggest worry for my mental health is dementia when I get older - that definitely runs in both sides of my family. It scares me to death.


#15

I’m sorry. That is frustrating. My daughter’s case is very stereotypical, so maybe I take it for granted that her diagnosis was simple.

I hope they get meds and all of that sorted out for your loved one soon. In the meantime, just trying to keep a low stress home situation (which will become the norm for you in managing the illness anyway), and taking things one day at a time will help get you through. Really, have low expectations of your family member. If they do productive things, be happy, but don’t get upset if they struggle to contribute. That sounds bad, but it’s hard for a person with schizophrenia just to cope with existing sometimes and the illness really takes away their motivation.


#16

When our son lived in our home with active psychosis, we took up golf. Golf got us away from the house for long periods of time. We walked the courses (takes longer) and concentrated on learning how to play golf. We needed the break from the walking on eggshells days. Even though there’s a book called something like “Stop Walking on Eggshells” I’ve never read it, don’t know what its about, I do know when our son lived inside and was so sensitive to the slightest noise, we walked on eggshells to not set off his psychosis. Especially if he was sleeping - if a sudden noise woke him up he would emerge from his room in full blown angry psychosis.

We brought our two large dogs inside our bedroom, locked our door, bought a giant floor fan that we ran on high speed to block the sound of our son being awake all night long, took some benadryl and got some sleep. I did the alert at night thing, but after what I have read regarding scz and ptsd - its not good to keep your brain in that hyper alert state.


#17

I can relate! I just sleep whenever I can, watching over my sibling like some sort of invincible gaurdian, even though I am only human. The thought of falling asleep when he’s having a rough night is unsettling. I want to be prepared for whatever. I’ve had to deal with a lot in my life that I kind of let my anxiety get too far. That’s why I have to take the extra steps to manage it; yoga, exercise, walks, meditation, limiting caffeine, fitting in enough sleep when I can.


#18

Just be very careful. My son beat my face to a pulp during a psychotic episode. He pushed me from behind and showed no mercy during his attack. My wife jumped on top of me to cover me from his kicks and even she got kicked in the face. I am convinced that he would have killed me if I had been by myself. After that, he lived on the streets for two years and begged to come home. I let him under the condition that he see a doctor and take his medicine. He was doing much better mentally but physically it was destroying him, so he quit. After a short while the episodes returned so we gave him a choice to stay under medication or leave. He left and is living on the streets. He tried to break in once and another time came to the door. We called the police both times. We are absolutely terrified of him. My wife is the most caring and loving person I know and she refuses to give him another chance. She was the best mother that he could ever have , but the reality is that he is truly capable of killing us. There is so much more to this story involving threats, verbal abuse, and stealing. I never in a million years thought that our only child that we spoiled and cherished could turn into a violent, deceiving , cruel person. I dont hate him, I hate schizophrenia. I am so afraid of him that I keep a gun by my bedside. I pray for him and us every day. I hope that God forgives him and us for giving up. The violence was just too much to even think about going through it again. He broke my nose in two places, fractured my eye socket and jawbone as well as my ribs . My eyes were swollen shut. My face looked worse than any defeated fighter that I have ever seen. My wife said that I was knocked out and he was just kicking me in the face without stopping. The emergency room took me right in and checked me for brain swelling. The doctor said it was the worst beating he had ever seen. I admire everyone’s bravery that is dealing with this horrible condition. We really tried over the years; I even offered to buy him a house or set him up in a apartment but his paranoid schizophrenia defeated our efforts. Every time the phone rings , I fear that it is the police telling us that he has passed away. I wish everyone a better ending than ours.


#19

So confused I’m so sorry for what you’ve gone through. I would imagine that you are also suffering from PTSD. Was this within the first couple years or as the illness progressed? Do you know if he was under the influence of another drug? Where their warning signs that he might do this?

I know one day when my son was off his medicine he get so irritated and one day came in and I could tell he was having an episode. I held out my arms as if to give him a hug but he squeezed my arms enough that they were bruised. I won’t do this again and would not recommend getting around them when they are upset.
Our son has PTSD and when he’s psychotic runs through the house very frightened. Please episodes last anywhere for an half an hour to part of the day but most of the time they sort of run the course. I’m sure he is restrained if he were to have them in the hospital and that must be awful. Still it’s awful when someone gets hurt because of psychotic episode.


#20

We will suffer from this the rest of our lives. Not a day goes by that I don’t get depressed about it. It all happened before we knew the symptoms of schizophrenia. Before this , he was hospitalized back east for breaking into a very famous political family’s house thinking that they could “save him”. The hospital kept him for 6 weeks and would not tell us anything. When we picked him up , he seemed fine. I was just ignorant and bewildered by everything. We were not warned or informed about his condition. Not being medicated, his condition worsened. I still did not know anything about schizophrenia. One night he was acting strange and I approached him about his actions. He then got in my face and I asked him to calm down. I put my arms behind my back to show that I was not challenging him and walked away. He followed and pushed me down and began the attack. He disappeared for two years and came back. I didnt press charges , fearing the damage it would do to his record. He acted strange again and we called the police. The police brought the mental health experts and they took him to the hospital. This is when we were informed about this terrible illness. Because of his history and diagnosis, the police and mental health dept warned us that we were risking our lives if we brought him back home. We still did because at that time he agreed to the medication and doctor appointments. We immediately got him on SSDI which was very helpful. However , Social Security now wants him to see a doctor to confirm that he is still ill. We wrote back stating that we have lost contact and that schizophrenia has no cure. He used to call about every two weeks and I would take him clothes and money. He would ask if he could come home and I said only if he went back to the doctor. He refused and I wished him well. That was about two months ago. I have no clue as to where he or his mind is. We just feel helpless and scared. We want to see and hear from him but at the same time I am terrified at the sight of him not knowing what is going through his mind. I know that others have also gone through similar actions from their schizophrenic loved one. Many or most are not reported fearing court actions and publicity. The mental health and police personnel that I have talked to stated that the numbers are high and growing. We live in a “well to do area” and a police sgt. told me that up until 5 years ago, he rarely received a call in regard to a mental health episode. Now he said that the dept is constantly going out on these calls which is difficult because they are very time consuming. We just pray for a miracle cure that will be forced upon those suffering because many dont realize what they have.


#21

Even if they don’t have a specific diagnosis, it seems odd that they would not try to break the psychosis. In my experience, the longer the psychosis continued, it was harder to break and took longer. Greatful that we are past that stage. Haldol worked for my daughter.