Family and Caregiver Schizophrenia Discussion Forum

A little background before I post any other questions


#1

The first post I made was concerning setting boundaries with someone who suffers with schizophrenia.
Let me back up and give some more background of the situation surrounding my stepson and some of the dynamics involved. My stepson is almost 30 years old. I have lived with him and my wife now for 3 full years.
Two months before his 20th birthday (oct 2004) he suffered a massive stroke. Which left him with limited use of his right arm. He also has some foot drag. He can control some of that if he wants (the foot drag). He also suffers from Aphasia. He can talk and carry on a conversation. He is perceptive. He can read enough to himself and understand what he has read to be able to comprehend (not everything but a lot). He would struggle reading a loud. He has trouble with numbers but he can count money to a certain extent.
Here is where it gets difficult for me to understand it all as a whole. I understand he has limitations physically and mentally.
There is a personality there that is separate from the physical and mental difficulties. I see a personality that is very demanding and uncaring for anyone else almost all of the time. I think my wife sees it but just goes with it and whatever issues it brings. She wants to try to do what he wants to make him "happy”.
I am struggling with what he has been allowed to do for years even before I met him and now it seems that things will never change. For instance he is up all night while we are asleep. He walks in and out of our room while we are asleep. We sleep with the door open. My wife wants the door open to hear if something bad does happen. He doesn’t care to wake his mom up to ask her selfish things like, can you make me a sandwich or can you get the lid off my mountain dew bottle. The list can go on. I know for a fact that he can walk up and down the stairs quietly when he wants to. When he “decides” not to be quiet he will stomp up and down the steps. He will go into the kitchen and make racket and then walk out the upstairs door and pretty much slam it. My wife has asked him literally at least 100 times please pull the door closed quietly don’t slam it shut.
If he wants something he will persist until he gets it. The minute he gets up after sleeping all day he will hit us up to take him to the store to get soft drinks and dip (tobacco). His mom will say I will take you here soon. He then proceeds to hover over her and ask her when. Many times, he will not let up. Most times I will just go ahead and take him just so he will leave her alone. A lot of times I will take him, which I don’t mind most of the time.
He has no chores at the house. It’s been tried. He will not do them. Her response is how do you make a grown man do something he does not want to do?
I cannot get her to go to support group meetings. She says she knows she needs to but does not.
I guess my thought is “is anyone in this position?” I feel compassion but then at times I don’t care. Then I feel guilty for not caring.
Thank you for reading this. I am just trying to make sense out of all of it. I feel like it will eventually ruin our marriage if we don’t handle this situation properly.
By the way my stepson has his tender moments.
There is something that is an issue that may never go away though. One of his delusions involves me and he brings it up when he is having a bad day or he has deprived himself of sleep. It’s not pleasant for him or myself or my wife.


#2

Looking4ansers,

Yes, I feel all those things you feel. Your feelings-every single one of them-are normal, they are okay for you to feel. My daughter has sz,my DH has a TBI and PTSD, sometimes I feel inspired by what they overcome, sometimes I feel compassion, sometimes I feel like running away, sometimes I feel guilt, sometimes I feel resentment, sometimes anger. You shutting off your feelings sometimes is a defense mechanism when emotions are overwhelming-it’s not that much different than what your wife is doing. One thing I have learned is to accept all the feelings I have-not to judge them. If we listen to our emotions they impart information to us-that’s all that they are is information givers-that is their value-they are not “good” or “bad.”

I strongly believe that your family needs help-starting with yourself and your wife. I believe counseling is in order. There are so many emotions creating a fog around you guys that it makes it hard to see clearly-you are in survival mode-when you are in emotional survival mode there is no “coping” only surviving. There is no healing-only surviving. You have to move past just surviving the tragedy of the situation. If I were you-I’d make getting your wife into counseling-with you or seperatly (but both of you) your number one priority. Don’t accept refusal-keeping trying, trying different approaches, different tactics. Don’t give up. Because I agree with your assessment of the situation, all of these unresolved issues and feelings will be toxic to your marriage over time if they are not dealt with. Have you told her you feel this way? You have every right to. You have every right to express your feelings in a loving way and she needs to know. You guys can’t begin to help your step son with these problems until you both are in a strong position to do it. You too are the bedrock for him, and that bedrock needs to be built on harder stuff.


#3

I remember your first post, and the news that your stepson had a stroke at such a young age does alter my perception rather. It actually makes his situation rather more serious. That, and then sz diagnosis must have been devastating for both him and your wife. Just one of those would take years of work to recover from. To be struck by both is an incredible burden. So your family needs a lot of support. Three things I would suggest. One is to keep building your relationship with both of them, just by daily kindnesses. Their nerves must be stretched. In their place, that’s what I would need. I appreciate that from my DH. Second, you should be “in the loop”, if they agree to that. I mean you must be informed about your stepson’s conditions and treatment. Ideally, you should attend some of his apointments as a family. You are a family. How can you function and help if you can’t be informed and take part? Third, maybe you can take a different role. I don’t know how much support you get from those around you, but if your wife is overburdened and sacrificing herself a lot, maybe you can take over the role of increasing your family network, making sure that you all have a social life, inviting people round (maybe just to do simple things, watch films and eat pizza, etc, at first), arranging days out together. You know families crack because they try to function without outside support or any kind of relief. I have found that my community is really willing to help and also simply to socialize with all of us, and actually they are not at all “bothered” by my son having sz. They only worry about his suffering. They don’t reject him or us. I had some insensitive remarks, but I dealt with them calmly and the people changed their attitude. I might add that we also got financial support when we needed it, and people tried to find my son a job, etc. he wasn’t able to keep it up, but there was no bad reaction to that either. So, basically I recommend that instead of trying to “sort out” the rather intense set up inside your family, you try to reduce that " intensity" by building a network, which, I believe, will naturally help you all.


#4

Hey, lookin4answers,

I posted to you just I had to get ready to go to work. You said:

My daughter does this kind of a thing because of MY boundary issues. I know I have trouble with boundaries, my daughter knows this, since I have started to create them she will try see if I will be loose with my boundaries-it’s not because she is inherently inconsiderate-it’s because I’ve allowed it, more or less for so long!

She did this same thing today, just before I went to work. She knocked on my door an hour before I had to leave, stating she wanted me to take her to Walgreens, right that moment. I responded that I couldn’t take her and wanted to know what she needed. She stated she NEEDED eyelashes (she wears false eyelashes). I asked her what was wrong with the ones she had on and she said that they were all bent up (not as far I could tell). I told her they looked fine, and I needed to get ready to go to work and I would not be taking her to Walgreens. She huffed okay, and left the room.
So I start getting ready and 10 minuets later she comes in and says “Come on mom-I’ll be quick-it’ll only take five minuets!” I say it’s 10 minuets to get there and 10 minuets back-so that’s 20 minuets right there, plus the five you’re promising it will take you-25 minuets. She says “But you have almost an hour!” I and I let her know in that hour I have to finish getting ready, eat lunch, and let the dogs out. I do not have time to take her, and that I can’t drop everything because she needed help, and she needed to plan better. She said okay and within five minuets she was over it.

I have been working on this issue of her always wanting me to take her everywhere at the drop of a hat the moment she decides she just HAS to have this or that. I told her several weeks ago, I will take her to get toiletries once a week, so she needs to plan out in her head what she needs and what she will run out of within a week. I even run through the items she uses for her-your shampoo, your eyeliner, you razors, your eyelashes…If she does not plan it out well enough-I don’t take her. And I have to STICK to that. I set the expectation before hand, and remind her of the reasoning behind it, and most importantly stick to it. If I always remove every consequence (consequence being you don’t plan it out you don’t get it) how is she ever going to learn anything? She won’t have to think it through-because she knows mom will still run out and get it. If I don’t then she HAS to start thinking it through.

The same thing is happening with your son and you and his mom. Why would he not just hover and bug you guys-it works! Sounds pretty smart to me. Sometimes I tell my daughter, I said I will take you when I am ready-I don’t like to be pressured beforehand. If you ask me again before I’m ready I’m not taking you at all. And then I don’t take her if she asks again. Guess what-she doesn’t do that anymore, how nice for me. Life, for anyone, disability or not, is not always about being happy every moment of every day. If she gets mad-she gets mad. She’ll get over it. It’s only eyelashes for heaven’s sakes.

Oh, there are plenty of ways-who takes him to get his tobacco again? And why should you do nice things for someone who never does them in return when they are perfectly capable? Nothing to feel bad about-reciprocity is a basic rule of social interaction.

I have nothing but compassion for all three of you there.

I know a lot of people get freaked out about counseling-but especially when it comes to boundaries-this is major practical issue in your household-and very, ingrained, deep rooted patterns of interaction that go WAY back-and I doubt just showed up when your son got sick for your wife. Counseling just gives you tools to deal with life-think of it like a big old psychological Home Depot where all the tools are free.


#5

I would contact Dr Phil…