Family and Caregiver Schizophrenia Discussion Forum

Understanding hard to find


#1

Soon after my son had his first psychotic break, I realized that what I thought I knew about mental illness had in no way prepared me for the reality. Now five years later I accept that there was no way I could have been prepared for the anguish, turmoil and fear that his illness caused. I have also had to accept that 99% of people can’t understand what it’s like. Even my closest friends can’t wrap their mind around the reality of it, no matter how much they might try. Since then my other child has been diagnosed with Bipolar II, and even though she is not disabled from her condition, it’s still a painful struggle for her at times.
So I have seen a counselor. Actually I have seen five different counselors since we started down this path. The last one has helped me to regain my sense of peace. Yesterday he said that understanding is so close to love that it can be mistaken for love. It reminds me of the Hebrew word yada which means to be known, and also of the saying, "A friend is someone who knows all about you and loves you anyway.
I think as a caretaker it is so hard to find that kind of understanding. Even between spouses it is sometimes hard for people to understand the commitment that mothers have to take care of their children NO MATTER WHAT. We need someone to help us balance taking care of ourselves and others. We need someone to offer encouragement when it seems nothing we do helps. And we need someone to admire our determination and loyalty. I know that is not always easy for me to find, and feel sure that is the case for a lot of the caretakers on this forum. I want to say that I understand the heartbreak you feel over mental illness and the never failing love that keeps you going on. And I want to thank ALL of you that post on this forum so that I know that there are people who understand.


#2

Thanks mamakaye, I am new here and appreciate your words. I have had trouble accepting that my adult child must make this journey on his own. I want to be able to make his days better, his future brighter. No one understands our struggles except other caregivers. We have to find our personal peace while our hearts break a little more each day.


#3

So very well written. Thank you. You are 100% correct with everything you said. It touched me and helps to know you understand completely! ~hugs~


#4

Mamakaye, thank you for those kind words. I think you have a good counselor there and I appreciate your sharing.


#5

I think we all understand, I certainly do, the undying love a mother has for her child, no matter what age. And, yes I do know there are good fathers and caregivers out there too that understand. My problem is that there are way too few. My son and ex husband think my daughter’s behavior due to schizophrenia are all behavior problems. As for me and my father, we love her unconditionally and try to do everything in our power to help her feel loved and safe. Her father left over 10 years ago and I told him, “No one has the right to give up on their child.” He said he has not given up. So now for the last 10 years, he calls her maybe once every year to two even though he lives nearby. He never ever comes to visit her and when he does call it is usually about something she did or didn’t do that made HIM feel bad. Can everyone say scum bucket?


#6

Absent father. There should be test that people have to pass to be a parent. I’m sorry and agree with you. I heart husband say things that I can’t believe come out of his mouth.


#7

I THINK we have opened new topic. Differences of how mother and father react when child has chronic or disabling illness. I have personally experienced this. I also work in a drug store and have made many observations of absentee dads. It is something I have struggled to understand. I also had a psychologist say, “How much will you do for your child before you decide to live the life God has for you.” WHAT!? In my opinion loving my family and taking care of them IS the life God has for me! By the way, that psychologist was male.


#8

My husband once yelled at our son in the middle of a psychotic episode “YOU HAVE SCHIZOPHRENIA” -as though our son was deaf and saying it loudly was the answer. He won’t read the books about how to communicate with our son, won’t watch the Amador videos. While he has come a long way, he still is dropping the responsibility on me.


#9

My husband and I attended Family to Family together. I was determined that our son’s issues were no longer going to be just my responsibility. When our son didn’t jump right onto a career path after college, my husband began blaming me for the situation.

There were two other dads in the class, most of the class were moms. One of the dads came to about half the classes, my husband missed 3 classes, the third dad came to all of them.

For a while we were a partnership making decisions about bringing him home getting him to a doctor. After our son lived with us for a while, my husband became afraid of him and once again stepped off instead of stepping up.

He’s here, but just ignores our son and doesn’t try. After my sheriff standoff we made it a rule that our son can’t come out of his apartment when his dad is home. He was possibly intimidating my husband by staring in the windows at him.

My son’s said he just thought his dad would stop calling him names if he stood there and looked at him.


#10

Hi, I’m sorry your husband is not trying to educate himself. It’s so much easier to proceed forward with some basic understanding. And that rule of your son not being able to go outside is pretty heartbreaking because it’s meant to help his dad, not him, if I’m reading that right?


#11

Yes, the rule is only to make his dad feel safer:( it just hurt to tell my son that he couldn’t come outside when his dad was home. I told him that the two of them needed to be able to share our property, just at different times. I have to do all the outside work now as our son is nearly always at home.


#12

Well, at least you have found a way to live near your son so you can see him.


#13

Hi I am a step dad to a 32 year old man with paranoid SZ. I have been married to his mother for over 5.5 years and he has lived with us the whole time.
It is very difficult at times living with him and his mother together. He is very demanding when he does not get what he wants and it disrupts the whole household. He is very demanding period. I pretty much have to sit back and watch and tolerate everything unfolding. If I can’t take it I will go to my room and close the door.
I knew he had an illness when we got married and I was willing to work with him and her. For the longest time she would not even allow me to use the word schizophrenia.
It has almost destroyed our marriage though. I care about him and I help when I can. When I have a different opinion on how something could be handled I am looked at like the enemy or I don’t have enough pity on him. I actually do have sympathy for him and I do things for him when I don’t really want to or am too tired because I know he is struggling. I don’t even sleep in the same bedroom with my wife because of the disruptions he causes. She lets him though. He has no regards for boundaries when it comes to privacy and my wife really has not enforced them…This is kind of helping me write this stuff down. I may do a separate post on my concerns and ask for advice. I do love and care for the man but I feel like I am going down with the ship. I went to a NAMI meeting by myself a couple of weeks ago it helped me somewhat.


#14

Is there any chance that the two of you could attend NAMI’s Family to Family together? Our class leaders believed everyone in the family dealing with a family member with scz could gain from doing some sort of therapy together. At the time I wondered why do we need therapy, our son is sick, not us?

Now I can see how it would be really helpful in creating coping strategies that address everyone’s needs.


#15

I think when your husband refuses to learn more it is because he cares TOO much. He is trying to avoid the feelings caused by the realities of this disease.


#16

Thank you so much for posting. Most of the posts here are by mothers, and it is so helpful for me to read a truthful version of the other side of the coin. My husband left me in 2014, and I have been afraid that no other man would even be willing to ATTEMPT being with me knowing that my son and I are a package deal. I think that you married her knowing the situation shows the depth of the love you have for her. And I can see from your post and the fact that you went to a NAMI meeting shows that you have not given up on the relationship. The two of you will be in my prayers! Change that…All three of you will be in my prayers.
There needs to be so much more to help families in these situations. There are so many unmet needs. My son is very stable now, but when he was in acutely psychotic we could have used help with housework, counseling for ways to better help him, counseling for our own coping, more sleep, someone to take care of him for a few hours just to have a break, etc. We needed so much that just does not exist. Consequently, caretakers burn out, become more and more anxious and angry which destroys health and relationships.


#17

You might be right mamakaye. Sometimes he will say something that makes me think he does care deeply about our son. I need to remember that when he is the one being difficult.


#18

@mamakaye – I’ve struggled with this more in the last 2 years and I’ve been dealing with it for 18 years. In the beginning I felt like you. I jumped so many hoops and beat every bush in my community to find help for my daughter. For the most part I feel I’ve been successful getting her the support she needs. However, I’ve now arrived at a point where I feel anger, resentment and deep sadness towards my daughter. I can’t seem to shake the feeling.

My daughter spent one night in jail but all charges were dropped and I’ve told her mental health provider I will not allow my daughter back in the house. Part of me feels like I’ve betrayed my daughter and the 90% percent of me feels I’m doing the right thing not allowing her in my home. Maybe when she doesn’t have me to rescue her she’ll develop her survival instincts. I think I’ve helped her too much and maybe that’s why she is emotionally around 12 years old instead of the 33 year old woman she is. Every day when she was in my house was for the most part awful and my grandchildren suffered from the constant rage she felt towards me and the anger I felt towards her.

I’ve strongly suggested to her caseworker that she cannot live independently and that she needs to be in a group home. She is extremely fragile and I pray a good home is found.

We caretakers need a lot of support because it’s not an easy journey. Wishing you and your family the best.


#19

Thank you for your reply and prayers. This morning I am very stressed out. I am angry. I am not showing it though. To make a long story short my step son downloads playstation games from the internet. To reduce stress on my wife (long story) We let him use our checking account as long as he has the money for us to deposit for the download. It makes extra due diligence for me to make sure the money gets deposited etc.

He gets a disability check at the first of every month. He pays us room and board out of that. it is very reasonable amount.

that leaves him with way more to spend per month than the rent he pays. It is only the second day of the month and last night he went online and downloaded $300 in games. He told his mom he was downloading 2 games that would maybe amount to $100. With that series of downloads he has hardly any money left for the rest of the month.

I , we, end up having to front him money for this or that over the course of the rest of the month. I get upset on the inside because his money gets wasted on excessive video games, while I struggle to get bills paid and my wife does not work. I say to her the playstation account has to be removed from the bank account and she gets angry with me and thinks I have something against him and it makes her life harder if his game account is not connected to our bank account.

This is one tiny example of what I have to deal with. I don’t know what to do??? I try to keep the peace but then I have all this inner turmoil and stress on me. Thanks for letting me vent


#20

I would disconnect Playstation account from that bank account. He went over the limit. Not an argument to have with him or your wife…

I buy Playstation credits from Amazon in whatever amount I choose and send the codes to family member.

There are other workarounds for this. Separate account with set amount of funds transferred in only when you wish? Pay as you go Visa card? Playstation gift cards available in grocery stores and electronics stores?

Sometimes our small problems get mixed up in our larger ones and the whole dynamic gets activated in the little things. Your turmoil and stress are real and I hope you find ways to cope with these larger difficulties as well.