Walking on egg shells


#1

I have been posting for about the past week and a half about my 24-year-old son’s first psychotic break (that I know of), job loss, eviction from living situation, hospitalization, eight days in inpatient mental health recovery center and now currently, his intensive outpatient therapy. Schizophrenia has been in the conversation but the doc won’t commit to a diagnosis yet.

After being discharged from the recovery center, he has come to live with his stepdad and me, mom. We have done everything for this kid - rescued him from being thrown out in the rain with all his stuff, given him a roof over his head, food, much needed clothing items, daily visits when he was in hospital, rides to appointments, etc.

He is pretty much unaware that he would have been homeless if we didn’t step in. He shows no awareness of the thoughtful, extra things we do for him. For example, my husband bought a pair of sandals for him and he put them on, said he liked them - with no thank you.

He seems largely unaware of how much this has impacted our lives. Being on xyprexa, he is also eating us out of house and home! For example, we bought a container of ice cream and he just ate the whole thing without any regard to us having any of it. This has been with the case of just about all the food. We can hardly keep up with the grocery shopping.

We don’t know if it is appropriate to express our feelings about some of these things - or not. Suddenly all of our lives have been hijacked by the illness. My husband and I are walking on egg shells. It is a lot to process in a few short weeks.

My question is, is this the disease? I pretty much know the answer will be yes. But how do you deal with it? We are so new to this. It often feels like I’ve been taken hostage in my own home.


#2

I think the lack of empathy is the disease but in the complete family guide it tells you to talk about things that bother you.


#3

You deal with it by finding a new normal.

It will take time for his brain to heal, some say as long as 2 years.

And, if it truly is schizophrenia, his cognition & emotions will be impacted.
Try to grow a thick skin & not let the little things like that bother you.

Besides, did you save him from all those things because you love him? or did you save him because you wanted him to be grateful? If it’s the latter, brace yourself for a lot of disappointment.


#4

That is a good point. It’s not so much that “I” want him to be grateful. It is more dealing with the shock/loss of his lack of realizing both his own dire straights and how much this whole situation affects others. I guess this is the new normal. As parents we teach our children to say thank you, to be thoughtful, polite, helpful, aware of others feelings, etc.

To let all of that go is not easy to do in the span of a few weeks.

When you first are going through this, it is one devastating realization and loss after another. I don’t mean to sound petty… I was just asking for other’s suggestions on how to deal with this. I am walking on egg shells in my own home. I don’t know if it is reasonable to have any expectations at all of my son.


#5

My brother was just diagnosed a couple of months ago… and the way he has treated my mom during this time has been heartbreaking. But I know he has little control over his perception right now and what seems real to him is not what seems real to the rest of us. With time and treatment I think his perspective will be more in line with the rest of ours and I think he will be grateful for everything we all did to support him during this time when he was so difficult and when he had such impaired ability to think rationally. I’m sorry for what your going through… in my opinion it’s the illness


#6

It is surely the illness. I know I need some help myself too. This has all been so overwhelming.


#7

“It’s one devastating loss and realization after another” this has been the experience for me and my family for the past couple of months also. It is hard to know what to hope for, but the truth is that it’s too early to tell. All we can do is be patient and supportive in the meantime, but we will be in the best place to help our loved ones if we are in a healthy place ourselves


#8

Just to add to what @slw said which was on point, besides getting use to a “new normal” you have to teach yourself to stop expecting normal responses from him, don’t expect anything (at least in the beginning where you are now), If you want something a certain way -food for example you have to create a way that it will suit you. What I mean is take my situation in the beginning with my son–almost the same thing, coffee was a problem, I had a day when my son used an entire 3 pound can of coffee in a day or however much is in those large cans, try as I might I couldn’t get him to just make a pot. so I locked up the coffee and I left him a pot and that was it, eventually the caffeine was still too much so I started leaving a half a pot, and eventually when he got stabilized he was okay with a cup or two and he stopped with the craziness and I could unlock the coffee and now he can make his own just fine (but it took years to get back to this), but other things like sweets or cheese or ice cream, my rule is first of all that he only gets half of whatever it is and the other half is mine, and if polishes off his half day one and I take a month to use my half, no more is bought until I need it, not when he needs it…and don’t even imagine you will get a thank you or anything positive in the beginning, his brain is not his own right now, all you can do is allow him a safe place to sleep, enough food to stay healthy on, help him get to the doctors, help him get his meds in him if you can, and otherwise keep your relationship as low stress as possible until he gets better and even afterward. The recovery process is very slow, it isn’t pop a few pills for a week and suddenly you are cured (like @slw said it can up to 2 years) or longer with steady compliance on meds etc to really see the old self come back again…but when it happens, wow --all I can say is it all seems worth it then. Get support for yourself in the meantime, it is critical for your own sanity and for you to be your best for your son. You are his “soft place to fall” and unconditional love will be tested to the max. He needs you whether he can verbalize it or not. Chances are he cannot.


#9

JooJoo, Personally, I rely a lot on the caregiver 3 C’s. You didn’t CAUSE this illness. You can’t CONTROL this illness. You can COPE with this illness.

Coping is much bigger than it sounds - once you have gotten there.

If your son’s battle with some sort of mental illness continues, you and your family will look to work out a solution that can accommodate what is sometimes called “your new normal”. The solutions aren’t the same for everyone. Some can live with the mi family members, some have to find a way for the mi family members to live somewhere else. Trust your instincts as a parent.

Watch your child, learn his struggles. If he could, he would still be displaying all those manners you taught him. Remember that even without those lovely pleasantries of daily life, he is still your child, and he is learning to survive the best way he can with a brain he can’t depend on. Oh, how he would do all those things you remember, if he could, if he just could.

There will be times that you will still see your original child, even if he doesn’t land in the lucky 25% - you will see him from time to time. For me, these moments are as breathtakingly beautiful as they are painful.

I write that because, at times, the illness gets in the way of us seeing our own child. I know many of us have that moment where we think “this is not my child”. I think that feeling resonates right to our parental core and lets us know in a very primal way that our children are ill. Not by their choice, oh no, not by their choice.


#10

If he was polite and kind before the disease, that is still with him and as Hope said, you will get to see that person again.

Sure you can say things to him like please don’t eat all the ice cream, but don’t expect him to respond with ok I won’t. You will want to set boundaries about behaviors that you absolutely cannot tolerate. Other things, you will have to be more creative like Catherine.

One day when my son was doing better I said to him, “It has to be exhausting to be you”. He turned to me, looked at me (and they often cannot do that so it was significant) and said in a very weary voice, “You have no idea”. As heartbreaking as that moment was, I hold on to it when he is lost in his own thoughts. His world has shifted too and he battles it with every thought whereas I am only observing it.

Some of our family members are dealing with the disease from an “me” standpoint. They have unrealistic expectations and try to reason with him about how he is hurting them with his behavior. They have said if he had a brain tumor it would be better because a tumor is a disease, mental illness a behavior… That simply is not true and by holding onto that thought, they are making matters worse for themselves.

You found a good forum to pick up a few tips or vent when the days are really knocking the stuffing out of you. Glad to have you!


#11

Everyone has responded so well, and much better than I did.

I would like to add one thing though. Putting any kind of pressure on my son makes him worse.

And, very small things that would never seem stressful to people without a MI can be huge for him.

I think I read once in an article about “low expressed emotions” that having high expectations about recovery that you let your family member know about can put undue pressure on them. They start to feel guilty for not being better, responsible for your feelings, all kinds of things.

I think this is a link to what I read:
http://www.personalityresearch.org/papers/mcdonagh.html

I’m definitely sort of guilty of the emotional over-involvement, but not quite in the way they describe. I don’t have anything critical to say when I talk to anyone even without my son there - I just state the symptoms as they are with no opinion about them other than if I think they’re getting better or worse. And, while it’s heartbreaking, I don’t think I act like I pity my son. I’m sure he picks up on my feelings though because he’s extremely sensitive to other people’s emotions and can read people like a book even when he can’t comprehend what they’re saying.

I don’t think anyone’s brought up expressed emotion while I’ve been here. It’s a good thing to think about when MI is new to the family.


#12

I thought your original response was quite brilliant, direct yes, but quite brilliant all the same. Especially “brace yourself for disappointment” - I lol and read it to my husband, if anyone needs a sense of humor, its all of us.

Keeping their live as stress free as possible is what they need the most - such a tricky thing to provide isn’t it? One parent wrote once, “this is what they need and its probably the hardest thing for them to get”. How to reduce their stress when the illness is turning our lives upside down?

Just like with our beloved mi family members, we often don’t know what the writer needs from us. Sometimes the words we write may help someone else and sometimes I think I respond with the words I need to hear.

I wish I could have gotten up to speed as quickly as JooJoo has, I might have been able to help my son so much more.


#13

Right?

I laugh about it most days, then without warning, I’ll cry.
I like it a lot better when I can find the humor in the situation.
At least I rarely cry around people - except my husband - anymore.

My life seems to be a constant cycle of getting my hopes up, then being incredibly disappointed.
I’d almost like to settle in to a comfortable level of steady disappointment to avoid the crash, but I’m apparently not built that way. If I was, I’d be in a chronic state of depression myself, and where would that get me?


#14

I have somehow managed to settle into expecting constant disappointment without chronic depression. OR maybe I am chronically depressed and just don’t remember being otherwise?

My hopes are now pinned on the future when he has a chance of the scz symptoms reducing…somewhat.

I get that mine won’t be the same ever again, but I can hope his days will eventually be, somewhat, better.

Maybe it would be better if I wanted and pushed for more? We just never know in this business.


#15

I’ve felt exactly the same. I’m always second guessing myself, but I should just go with my gut on things. Deep down, I know when he can’t take any stress at all.


#16

Yes the new normal.

Today we had a wonderful family breakfast out. Then we went on a nice family outing. Other family members who don’t live in the house saw the best of my son.

Later at dinner I very mistakenly brought up where he was in the scale of his safety plan (green light, yellow light, red light, etc, thinking he was doing fine) and snap he went off on me, told me I was a trigger by asking him, he was feeling yellow and red, that I was doing everything wrong, that as his mother I should accept him, to not be angry (we were not, just shocked because we had no idea he was struggling today so we became silent). He accused us of asking him why he was having psychotic thoughts, which we didn’t

I don’t know if this is a safe forum for me right now, as I am not where all you people are and to be honest, I felt a bit attacked by slw for just having human feelings. In this ‘new normal’ my feelings mean nothing and I am to ignore them.

So, perhaps I won’t continue to post here. I don’t have a thick skin, never have. This hurts beyond imagination and has been, continues to be the most difficult thing I’ve ever faced. I am drowning in the grief.

But there is no me anymore. Only my ill son.

Anyway, I don’t think I belong here. So good luck to everyone.


#17

You belong here; anyone with a family member who has a psychotic disorder belongs on this forum if they want to be here.

We are all human and really all do support each other. When you read around, I’m sure you will see that we don’t always agree and just have basic communication glitches that would be so much easier if we were all in the same room talking and we could hear each other’s tones and see each other’s faces.

There is you. Thank you for posting and being here.

This place is about you and all the rest of us who love a person with severe mental illness.

The more you know about the illness, the more you will be able to see that it’s not your son being ungrateful, but an effect or symptom of a serious illness. And I think that this will actually make you feel better and make your life easier.

I really hope you stay. You have already added a lot to the forum.


#18

JooJoo, I thought you should know that your posts helped me tremendously. I too am new to this. My beautiful 16-year-old daughter was recently diagnosed with schizoaffective disorder. Our lives – hers, my husband’s, mine – have been a living hell for the past couple of years. We are still trying different medications, therapies, etc. But one of the hardest things is facing the reality that our former life is gone and it is never going to return. I feel so heartbroken and depressed. My daughter’s life held so much promise, now she is struggling just to survive each day. I ache for her and what she is going through. But I ache for myself and my husband as well. I read your posts and heard so many thoughts I’ve had myself: “My husband and I are walking on egg shells … It often feels like I’ve been taken hostage in my own home … This hurts beyond imagination … continues to be the most difficult thing I’ve ever faced … I am drowning in the grief.”

Thank you for sharing your thoughts and feelings, JooJoo. You have helped me to see that I am not alone, and that my feelings are pretty normal. That encourages me. I am also encouraged by the posts of others who are farther along on this journey than you and I are. There seem to be many who say that we CAN do this – that we can find a “new normal” and look forward to happy slices of life, if not the whole pie. This is not what we planned, but we can make a new plan.


#19

JooJoo, I felt the same way when I began posting on this forum. I hope you come back when you are ready. In my brief experience, its not the sort of forum where people pile up on someone, it is the sort of forum where everyone is struggling under difficult circumstances at home. Extremely trying circumstances in all of our lives. Our children hit crisis points and have calm periods - and it can change in the blink of an eye. You will always get answers - they may not be the answers you need, it can be so hard to know what will actually help a situation.

I look at all the responses I get and try to sort out what I think may work for our family. You get a shotgun blast of answers and we all hope that among those answers and statements, is the one that will help you. If you can, ignore the stuff that doesn’t work for you.

When I finally made it to Family to Family - I was shocked that the help and education offered there was being done by parents with adult children like my own, everyone was trying to juggle and figure out how to help their children survive a mental illness. How on earth can anyone really help me when they have such difficult struggles in their own lives?

We are a good resource for you. We are all trying to not drown in our grief. Its real grief and just like real grief we are all sensitive.

When I first learned that both of my children had end stage renal disease, no one could say the right thing to me. No one knew my pain. Later to have scz piled on?

We cry with you JooJoo.


#20

I’ll apologize for that. I think I was pretty blunt & I try to not be that way online, although it’s my nature to be that way.

I didn’t mean to make you feel attacked, or offended, or anything else.
We’re in crisis mode here, I’m working on very little sleep (my son is on an awake 48 hour, asleep 4 hour cycle that takes him into a deep, deep psychosis), and I just shouldn’t have posted at all. That’s not an excuse, but an explanation.

I saw you going through some of the things I went through in the beginning & remembered that the faster I toughened up, the easier it got for me & the better it got for my son. It’s like he has no emotional skin, so him picking up on my emotions on top of his was not good. Did that mean I had to give up or hide some of my human emotions? In a way, yes it did. This illness changes them, and if he continues to live with you, it will probably change you in some ways as well. I still get very sad over the situation at times, I get angry a lot, but I had to give up any personal hurt or anger over my son’s words or behavior a long time ago - for both our sakes.

When you talk about your son exploding like that, we’ve all been there and been just as shocked.
As you can see, I’m blunt & direct, and I can say the wrong thing all the time. With my son, I’ve had to learn to say much less than I want, ask less questions than I want, confront less than I want, I just have to take it all way down.

Sorry for the ramble, but that’s the best apology I have today since I’m working on less sleep than I like. For what it’s worth, it was sincere. I didn’t mean to hurt your feelings, and I’m very sorry that I did.