Family and Caregiver Schizophrenia Discussion Forum

A little scared about her coming home


#1

Daughter in hospital recovering from her 1st relapse after sz diagnosis 14 years ago.

Until her hospitalisation, apart from a blip here and there needing pyschiatric support, she’s had no really bad delusions or behaviour, at least nothing that was terribly shocking or gave us cause to be scared of her. In some ways, reading the cries for help on here, we felt lucky we were all managing so well. However, just before we hospitalised her, and during her time in hospital as they’ve weaned her off her current medication in order to try a new one, we’ve witnessed delusions and agressive behaviour that have been very unpleasant, and I know anybody reading this will know what I mean.

She’s about to be discharged and we’re going to have her staying with us until she’s able to live independently again. The trouble is, because we’ve seen this new side of her sz, seeing her at her very worst, with no medication to dampen her symptoms, we’re actually a little scared of her. It’s horrible, feeling scared of our own daughter.

Anybody got any advice that can help us deal with this?


#2

Hello,

Sorry to hear about your daughter’s relapse. I know what you mean by aggressive behavior. My son’s was unbelievable. He was angry, mad, mean and saying very, very inappropriate things to his dad and I. When he was in the hospital, if he called and we weren’t here, he would leave a message that was so appalling I couldn’t repeat it. Completely opposite of who he is when he’s well. He’s very sweet and polite and caring. It just told me how sick he still was.

Is your daughter going to be on new medication when she comes to your home? They wouldn’t just release her without starting her on something new, would they? My son just got better and better every week he was on his medication after he got home. He was on both a shot (Invega) and pills (Zyprexa) when they released him. And Depakote as well actually.

It was very scary having my son come home too. I know the fear. My son was the best when we just let him sleep, left him alone, no confrontation about anything. Just tried to keep the house calm and quiet. He still is his best without any stress around him. It does take time, more time than I would have liked, but slowly he got better. I’m sorry for your worry and scare. I wouldn’t wish it on anyone.

I don’t have any advice but to maybe make sure the hospital is releasing her with enough meds, and some that are working. Will they keep her longer if she’s really bad?
~~ hugs ~~


#3

Make sure she’s released with medications and that she gets a therapist or some kind of group support system once she’s out.


#4

She came home to us for the weekend, on leave from hospital, to be back by 7pm Sunday. Saturday afternoon I took her for a haircut and then some coffee and cake. At times she was anxious, confused, not able to concentrate, and her mood was low. She was at her best when we were quiet, no confrontation, no questions. Between the nasty stuff we had quite a good day. She slept ok that night, just one nightmare.

Sunday morning she took her 15mg Abilify (she’s also on 2 weekly Clopixol injection). Her voices attacked her non stop all day, she was screaming, swearing, shouting, pacing, it was very distressing. Distraction didn’t work. I almost took her to A&E as she was complaining of phantom physical pain in various parts of her body. Has anybody else ever had experience of that? She was back on the mental health ward by 5pm.

In hospital she has other medication during the day, depending on her symptoms. I think she was given something on Saturday morning, in hospital, because her mood was so different between Saturday and Sunday.

At least we weren’t scared of her though, just very concerned, seeing her going through such agonizing torment.

She’s supposed to have a discharge meeting this week but there’s no way we can have her home yet, the neighbours would be calling the police and my wife and I would be having our own mental breakdown.

So we’re stuck in limbo land, she’s ok in hospital because the staff medicate her depending on her symptoms, we can’t do that at home. But we want her home because hospital is such a horrid place to be.


#5

Our situation was really bad last December. By January she emptied her part of the home. Everything she could carry went in the garbage, literally everything. The doors and windows were kept open (-25C outside). The furnace was maxed and got broken. The oven was maxed to heat the house (and outdoors) and got broken. things were thrown and broken. She hated me and I couldn’t talk to her. I tried.

I had my daughter hospitalized through a court order on January 13, 2017
She was very scared at the hospital. She thought i was punishing her for something and she didn’t allow me to visit her (i kept going and saying that I respected her wish and evey time turned around and went back home). By the middle of February she slowly started changing for better and accepting me. That’s more than 4 weeks in the hospital.
I communicated with the doctor and staff through these weeks. We knew she wouldn’t take prescription upon her discharge. So they discharged her in the end of February with CTO (community treatment order) So far i have taken her for her monthly shot. (next one is in 2 weekes) I offered her $150 cash for each shot (thats $5 a day, but she gets a lump sum immediately after the appointment, it’s clearly a bribe) So far so good. We talk, went for bike rides, yoga, tea etc


#6

YES. My fiancé ALWAYS complains that he’s in pain. But he can run, walk fast, and is super fast. Then he’s like, “I need a wheelchair. I can’t walk.” His chest hurts a lot, but all of the doctors have already said it’s because of anxiety. And that’s true, nobody wants their child to be there, even if they need it. It’s very difficult. :worried:


#7

Thank you doctor, that’s reassuring. Our daughter does have severe anxiety and is not currently on any medication specifically for it, so I’m going to put these pains down to that. She’s had the usual observations in hospital and there’s nothing wrong with her physically.


#8

I’ve been pushing for them to give him something for OCD, but all they’re giving him now is Buspirone, which doesn’t do much in my opinion. If you can mention the pain she says she has and how she also has anxiety about a lot of things, they might give her something to relax and focus on something else. I knew this girl in the hospital with anxiety so severe that she put herself there because she thought she was going to die all the time.


#9

My daughter has hallucinations of pain. The voices punish her by sticking her with needles. She also regularly feels like her skin is falling off and she has holes in her head. Pain is one of her worst symptoms of schizophrenia.

Fortunately, she still has really good insight and can usually tell if the pain is from​ hallucinations or if it’s real. Otherwise, we’d be spending a lot of time in the ER tracking down mystery illnesses.


#10

Thank you Doctor. Before she relapsed she was prescribed Venlofaxine for anxiety but I’m not aware she’'s having that in hospital. They did mention another drug they’ve been giving her but I didn’t catch the name of it.


#11

Thanks you TotesMaGoats, it’s reassuring to know others experience pain hallucinations, even though it’s yet another horrible symptom.

Our daughter is recovering from a relapse at the moment and her voices have become very loud. Interestingly she’s only had the pain hallucinations since the voices have been bad, so we do suspect they’re punishing her in some way, with needles or something. We’ll see if we can find out. She sometimes says it’s a phantom pain, which does reinforce what we suspect i.e. the pains are not due to a physical issue.


#12

No problem, hopefully she gets better and out that state of pain. It may not be real, but it’s very real to them. :sweat:


#13

My heart goes out to you. This is difficult indeed. Our daughter experienced similar rages. Eventually, medication helped and now she manages her illness well. I pray this is the case for you. She received her medication via injection for quite a few months before she transitioned to pill form. Quiet times are part of her self-care.


#14

Second weekend with her at home. Same pattern, woke up Sunday, took Abilify 15mg (she’s also on Clopixol depot), had a voice annoying her all morning. She also took a Lorazepam, seemed to have no effect. After lunch she said she felt mentally ill and was hearing her sz voices, then she had a delusion about her size.

Can’t see she’s making any improvement. She’s been best on atypicals but this Clopixol drug is a typical I think. So I’m asking her psychiatrist to look at some of the newer atypicals: Lurasidone, Asenapin, Blonanserin, Iloperidone, Ziprasidone, Cariprazine, Pimavanserin, Lumateperone. I can’t understand why she’s been put on a typical, when clearly atypicals are better.


#15

Several weekends later and here we are, our daughter has been discharged from hospital. After each weekend on leave with us, we gave her mental health care team a detailed report about her behaviour, moods, and symptoms. This helped them a lot with adjusting her treatment.

She’s now back at her flat, and spending a couple of nights a week with us (mum and dad). She’s on Aripiprazole tabs in the morning, and Quetiapine in the evening, but compliance is a struggle. We make sure she takes her tabs when she’s with us, but when she’s on her own we’re not so sure. She has the Crisis Team visiting her once a day, but they’re changing that, we think, to twice a day at medication time, to make sure she stays compliant. We’re making noises that she needs to go onto depot.

Although her behaviour isn’t quite what it was before her relapse, she’s definitely getting better. Probably her oddest thing at the moment is an obsession with Disney. She only watches Disney movies and seems to be constantly singing Disney songs. Maybe that’s a nostalgia thing, she always loved Disney as a child.

So don’t give up hope if you’re wondering if your loved one will ever be right again. Of course we have no idea what’s around the corner, but for now it’s a joy to simply have her back, and see her being able to participate in life again.


#16

The crisis team will adjust and come twice a day for med support? How great is that?

Your news is a big day brightener:)


#17

I know we’re lucky to have a state funded Nation Health Service here in the UK. We probably have higher taxes to pay for it, but a small price to pay for a great service, rather than pay health insurance.

The NHS provides appropriate care to the best budget. It’s much cheaper to care for someone in the community, with 24/7 telephone support and a couple of 5 minute visits a day, than it is to keep them in hospital. Crisis team support means we, her parents, don’t have an increased burden of care that could have an impact on our own health, and the person with the mental illness has daily contact, recovers much faster because they’re at home, and feels supported and safe.

Crisis team support is for no more than a few weeks, to get the patient to a point where they no longer need 1to1 or 24/7 help. After that, help is telephone support 9am to 7pm weekdays, and weekly meetings with a Community Psychiatric Nurse. Outside of that, there is a 24/7 mental health helpline, NHS Choices 111, option 2. As a last resort, a person having trouble can go to Accident & Emergency at their local hospital, where there will be psychiatric help, but it may take a while.


#18

Okay, this is the support we all need.

We have a problem here in that our government never seems to want to pay more for something that will lower costs considerably over time. Medicare does cover kidney transplants and dialysis for people of all ages who qualify with enough lifetime work credits. Medicare only covers the immunosuppressives for the first 3 years after a transplant. Many people can’t afford the immunosuppressives meds (required for the life of the graft) when Medicare stops paying. Their new kidney fails and they go back on dialysis - that Medicare immediately begins paying for - which is more expensive than paying for the immuno meds. Time and time again its been voted on for change, and its always shot down, even though it saves money in the long run, it will cost more the first couple of years.

One question?

How have you guys solved the problem of getting them on meds in the first place? How do families with adult children like mine get help for the mi adult children that are suffering from anosognosia?


#19

Hope - my son is on an ICT (Intensive Community Treatment) team that will do almost everything shop1uk is talking about plus they have other services too. I think we talked about it in my other thread.

Like, they try to keep them involved in the community. They will pick them up individually & do almost anything they want, and they arrange outings for them - sometimes it might just be bowling, but they also do day trips to places like the beach.

The problem is that my son refuses to participate because he’s very socially anxious & he’s a little paranoid about his case worker. They are designed to help keep them out of the hospital, but their hands are kind of tied in my son’s case & he may not be a good fit.

The amount of time is unlimited. He could stay in the program forever.

Our neighboring counties have similar programs, but I believe you have to be on Medicaid to participate & they’re not widely talked about. Just wanted to mention it.

If you’re interested in something like that for your son, you should call your county/city mental health services department and ask them if they have something similar. Maybe your son would be more open to it than mine has been - even if he is unmedicated.


#20

Hi Slw, So nice to hear we do have some parts of our country that are addressing the issue of severe mental illness. Unfortunately, I live in a rural county in a state that is one of the three worst states to live in -if you have a child with mental illness. Our larger cities are just beginning to have such programs, we are way behind. When I went to the county/state funded rural provider they wouldn’t even talk to me about what kind of help they provide. Told me they can only talk with my son. Who they have never laid eyes on, who will never show up at their door. This government provider does mentally ill and intellectually disabled. They love to work with those with id, they offer little for those with mi.

A city about an hour’s drive from here just set up the closest clubhouse program working with the NAMI I support. My son would never go to such a program. He would see such a suggestion as ludicrous. There’s nothing wrong with him, why on earth would he go there? Just ask him. Which reminds me, go check out my unmedicated thread in a while. I am headed over there soon, its been an interesting day here.