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Walking on egg shells


#21

I thought everyone’s​ replies thus far have been very diplomatic, compassionate, and supportive. Nothing to apologize for. Perspective is everything, and always varies. Just because advice is offered in a benevolent way does not mean it will accepted that way, if at all. Hopefully @JooJoo will find the kind of support she needs.


#22

If you came back here to read this JooJoo I have felt like I don’t belong here either- as my son was forced into a 51 mental health commitment thru the CTY I live in because I called the police on him. Even though my husband and I tried the “voluntary” we couldn’t convince him to go to the doctor on his own (except 5 years ago when he saw a Psychiatrist for a couple of months). There aren’t many family members on this forum that can relate to what it’s like to not have much of a say in my son’s care because the CTY “calls the shots”. But I keep coming back because I need to know that the behaviors I see in my son aren’t that unusual since he started on this “journey” almost 6 months ago- which makes me feel better in the end. That we’re all struggling with one of the worst illnesses known to man/woman!


#23

Well, I am back. I couldn’t ignore the replies because they all showed up in my email and of course, I read them. So here I am.

Slw, thanks for your apology. It was the part about did I rescue my son from ruination because I love him or because I want him to be grateful. I felt judged, singled out, all those icky feelings. Then the part about ‘just grow a thicker skin’ got to me as well, as if that is an easy thing to do. For folks like me who are thin-skinned by nature, it is really, really difficult.

But I gotta do what I gotta do.

I realized after my son’s blow up night before last that almost anything I say beyond normal routine stuff can trigger him. I can say things like ‘here are your bus tickets’ or ‘do you want mustard on your sandwich?’ - but I can’t say things like ‘how are you doing’ or make any such comment about anything he said, did, was looking at, touched, etc. Anything of that nature comes with great risk. So basically, at least for now, I must remove myself from his personal world and just focus on the externals like food, shelter and basic support.

I must detach. It will be a process and not an easy one.

With the support of both my husband and my mother, I learned that while my feelings may not matter to my son, they DO matter to other loved ones and friends. So there is still a ‘me’. It is just a different me with my son than the rest of the world.

This is a very important distinction.

I appreciate all the responses I got on this thread, even the ones that I didn’t like. The truth bites sometimes. I’d like to thank hereandhere, Mary, hope and jennifert for somehow managing to say just the right thing - and I really needed it.

Most of all, thanks slw for your full insight into the illness, what it’s like to be a family member, and the turnaround you made with me.

We are all here to support each other, right?


#24

The hard part is to detach enough so that you can help without enabling but to not build a wall where you stop caring.

I’ve been exactly where you are now - when everything you say is the wrong thing, and even the most innocent questions cause a meltdown. It was pretty bad for us because I like to know everything, in detail, so I naturally ask lots & lots of questions. I had to stop, learn to observe, and wait for him to share. Usually, if I’m patient, he will.

I’m not sure if you’ve ever seen The Dog Whisperer. I’ve only seen it a few times. But, if you pay attention, he’s always training the owners more than the dogs. That’s kind of how I feel like this is, only we don’t have an expert trainer guiding us through the process.


#25

Very delicate balance there. I feel that for now, I am on the enabling side. At the very least, I can tell him I love him. Even if that is all I say.


#26

:slight_smile: I’m glad you’re back.

There is a parenting technique for people with adult children who have had psychotic episodes and are recovering. It’s called something like benevolent neglect in the book I read.

You just let the person be as long as they are safe, eating, basically okay. Sprinkle in a few invitations to do fun things or family traditions or whatever you would normally do together as well as chores and errands. No matter how many times they say no, keep inviting as often as seems natural and unintrusive, but don’t push or ask why they said no.

It can take up to two years to recover from a severe psychotic episode. Rest is part of healing.

For you, this does mean withdrawing from what you call enabling, which simply means: doing something for another person that he could do for himself. But that doesn’t mean withdrawing from relationship. Letting someone know you love them and care and are there for them is important.

Plus, if he can’t do something for himself, then it’s not enabling. That said, it’s pretty hard to figure this out and it changes.

You are right that a delicate balance is required and this balance is unique to each family.

The benevolent neglect parenting technique also allows you to have time for yourself and to let the doctors and other professionals take care of your son’s health.


#27

Right! We are all here to support each other. So glad you returned :blush:


#28

I give my son a hug & tell him I love him all the time - and I’m an enabler too.
I think it’s important to make sure they know, because they may have other things telling them that no one loves them.


#29

I think that’s what I’ve been doing for a long time.

The ICT program is pushing to let them do more - or for me to do more - to get him out of his head & distract him from his thoughts. Knowing he wasn’t ready for that, I’ve tried to get with the program against my better judgement.

I think it’s time for me to stop second guessing myself & feeling guilty for the benign neglect as you put it, and go back to doing what I think is right.

Thank you for the reminder. It’s exactly what I needed to hear at the moment & I hope it helps the OP as well.


#30

I just edited my post because I now think it was called benevolent neglect, even better!

I will look for the book where I read about it…

All we can do is what we think is right and try to do our best.


#31

My husband and I were out enjoying nine holes of golf and we made a pact to not discuss our son for the time we were out there but of course he did come up and a part of the conversation developed that was actually humorous even in the face of all this tragedy and loss.

I said, “you never know what you’re going to get” regarding him returning each evening from outpatient therapy. It’s a crapshoot whether he’ll be calm, agitated or something inbetween. So my husband said “He’s like a box of chocolates,” of course, referring to the iconic line from Forrest Gump.

So now we lovingly refer to him as our box of chocolates. Hopefully someday he will be recovered enough that we can share this with him and he’ll have a little laugh with us.


#32

I love this, “your box of chocolates” I can’t stop smiling while I am typing this:):):slight_smile: Its so loving and so right.

My husband and I would golf as a way to be gone from the house for hours when our son lived inside with us. Near the end of the completion of his garage apartment, Jeb had some severe psychosis going on. We’d be out there golfing away in 40 degree windy, rainy weather fully enjoying the break.


#33

OMG golf has been my SAVING GRACE. It is the only happiness I get right now.

My son faithfully attended three consecutive days of outpatient therapy and then today, the first day he was on his own to get out the door and go ( I was away from the house) - he didn’t go.

He said “I just didn’t feel I’d get anything out of it today” - so now I’m grappling with all kinds of things. Because they expected him there and he didn’t show. I can’t deny I’m super disappointed in him that he didn’t go. But then I’m like, just over a week ago he was in the hospital.

How long do we give him a pass? Does he just do as he pleases or should we expect some commitment?


#34

That is not uncommon from what I have heard and experienced, it is difficult for our kids to follow therapy, rarely can they keep up with it, it just doesn’t come across the same to them as it would for us. My son was recommended to go to therapy by the psychiatrist and he went a few times and he said the very same thing your son said, so I called the therapist and to my surprise, the therapist said to me, “your son does not have much to say and is not very engaged in the session, it might be better if he stopped until he felt like it was something he wanted to do for himself, otherwise he is just a captive audience”…I listened to the therapist and didn’t force my son to go back because of what she said, he continued to improve without it, everyone is very different though.


#35

Well he has been enthusiastic (for him) about the therapy and what he was learning and then suddenly today, he just lost interest. It came as a shock but then, there are many shocks happening so even the shocks aren’t all that shocking anymore.

He is my box of chocolates and I never know what I’m gonna get.


#36

I do like the “box of chocolates” analogy --very positive way to look at it. :slight_smile:


#37

Hi JooJoo. This can be a pretty thankless position we are in. I remember something that really stuck out to me and struck me as funny too from my Family to Family meetings at NAMI. It was something like " Don’t expect appreciation, your reward will be in heaven." It sounds like you are learning a lot already about what to expect and how to interact with him

. I totally feel you on the eating all the ice cream. We can’t keep dairy where he sees it or he will consume a whole gallon of milk in a few hrs. same with ice cream. It’s really frustrating and he will use a new cup for every drink so if he has an all nighter it looks like a party happened in the kitchen in the morning. Things that he overconsumes such as milk, ice cream, soda, juice we hide it where he won’t look or drink it such as an empty almond milk container. We have become quite creative in handling this lol. We are considering getting a small refrigerator in our closet in our room. We let him have milk, we just will pour most of it in a secret container and leave his in the milk container or individual servings of juice. He never looks too hard or questions it.

Your son may be unaware of all you do and how this impacts you and he may never will but I bet he knows you are there for him. I’m so glad you are finding the time to get out with your husband and that you all can have a sense of humor. Take Care!


#38

We have to wait until August for a new Family to Family to start. Long wait. We will attend our first NAMI support group next Wednesday. Looking forward to making some connections there. Still so much to learn.

But I’m not feeling quite as overwhelmed as I was. The waters are slightly less murky. There is a calm in the household now because I have reduced my expectations to zero and we are just taking the path of least resistance for now.

As I write this my son is showering and getting ready for therapy today. I made him a yummy sandwich and no doubt, he’d go just to be able to eat that sandwich, lol.

I honestly think that part of the reason he didn’t go yesterday was because he had to make his own lunch and he couldn’t get motivated enough. He’s just not ready for that yet. He does cook himself eggs in the morning though. A start.


#39

Per the therapy, my son has been triggered in therapy before.
Especially group therapy.

On the few occasions where he took some college classes, he would drive there and panic attacks would keep him from going in.

He also had a class where he was sure the other students were whispering about him.

Everyone is different, and not everyone will talk about it, but keep in mind that your son may have other reasons he doesn’t want to go other than the sandwich.

I hope he goes, gets some value from it & keeps on going, but if there are some days when he can’t, don’t forget there are lots of possible reasons other than lack of motivation or follow-through.

Gentle encouragement & yummy sandwiches to help him to want to go are good though.


#40

Wow. This sounds like his dad to a tee. His dad is in such denial about what is going on… even though we (stepdad and I) are doing ALL the caretaking, ALL the supporting and he has done nothing except take my son on one outing last weekend. He has the nerve to tell my husband that N. (my son) should just have a list of tasks to do every day. That’s what he needs by golly, to stay busy. Good grief, he has NO IDEA what is really going on. Every time he sees an odd behavior in N., he attributes it to the meds.

When N. was desperately in need of rescuing a month ago, his dad wouldn’t even lift a finger. He was mad because N. wouldn’t return his calls. Therefor he didn’t deserve his help. If he couldn’t call and ask, forget it.

My ex should be bowing down to my 2nd husband, thanking him for all he has done for N. My hubby has been such a support to both N. and me, and I’d never be able to get through this without him. We have fought, no doubt, as our nerves were at one time worn to nubbins and things escalated very quickly but as I said in an earlier post, the household has calmed down now and it is a nice reprieve.

One day at time. One breath at a time. Appreciate every tiny thing/moment that is good.