Seeing that my son cannot engaged in relationships with other people is very hard because before all this everybody loved him.
First time poster, recent SZ dx of our 19 year old son. Very rough prior 10 years. Worst thing is the sense of loss but without a way to grieve with friends and family, who can never understand. We basically have it now confirmed that the son we thought we had, with all the dreams and opportunities, is gone. Reading these posts is helpful to me because I’ve felt so alone in this loss.
IMHO, the death of a child might be easier. With a tragic loss of a child, as a parent you experience a marked event, relevant empathy, and stages to move through to find peace. Of course it’s horrific. So bad that the death of a child is considered one of the harshest losses that causes many families to self-destruct.
But, to me, the loss of a child to sz seems extremely cruel because we all got to see them ‘before’ it hit. The friends they had. The love. The athletic ability. The hobbies. The passion. Gone.
Replaced with images of chaos, with physical and emotional scars, with such deep pain.
And we 1%’s are left without a public event, without empathy, without any acknowledgement of our loss, and without any means to process through our grief. And we get the extra bonus of trying to silently and secretly managing the ongoing care of a sz patient which is frightening, exhausting, expensive, and time-consuming.
To me, having a child with sz is possibly one of the most difficult pains a father (or mother) or family might possibly experience.
I feel your pain because I feel the same. But never give up hope.
Hello Sando, the life of your son isn’t over. There are many people on the diagnosed forum who have worked in some capacity or another. While many of them do not work in full time opportunities, they still have the capacity to function in some form or another. There is a computer programmer and even one person who is almost done medical school. I am a schizophrenic who has worked in capital markets at the bank and am now pursuing law school. I would advise you to continue to offer whatever support and guidance to your son. It took me nearly 10 years before I did anything with my life, but with continued support, it is possible to gain back a life.
@Lirik Well that is very hopeful! Congrats to you! My son is now off meds and starting to have symptoms again. I think it’s going to take a lot of off and on meds before he realizes that he is better on them. Thank you for your words of encouragement.
Welcome to the forum Sando, really sorry that life has brought you here.
NAMI tells us that as parents our number one concern is managing our grief for the loss of our children. I remember telling a nurse - “this is not my son” before I learned what was happening. How can we not mourn for what we had before? He is my son, he is still there, but it took quite a while for me to see it.
Eventually, it was the words of a person with scz on this forum that helped me. They wrote how hard it was to deal with seeing their parents’ disappointment in them. That resonated with me, I didn’t want to add to my son’s struggle. I wanted him to see me looking at him with pride, joy and happiness, the way I had always looked at him.
I am still frustrated that other people don’t understand what we lost to scz, as you pointed out, there was no public event, and as others have said, no one brought casseroles or sat quietly with us.
On some days my son is having to deal with something that requires an effort beyond his abilities, yet, he must do it anyway. The world doesn’t applaud him, most of it would rather not be around him. But here we all are.
For me the hardest part are the times when I don’t know what to do. The choices for my son aren’t always clear choices. As my Family to Family teacher says, only hindsight is 20/20 when you are dealing with scz.
editing to add
We are told as caregivers to remember the 3 C’s.
We didn’t Cause it
We can’t Control it
We can’t Cure it.
BUT- we can Cope with it. Coping never seems like much in the beginning, but in reality, its everything.
Thanks Hope. Appreciate the welcome and the encouragement.
I relate to every single word of what you said. Every. Single. One.
When a child dies you grieve but the anxiety ends, perhaps not the grief, but the overwhelming anxiety ends.
I feel as you do about the 1 percent. I’m not ashamed of my son but I have to protect him from public judgment. My husband and I have told our parents and my son’s sister but that’s it.
I wish the very best for you and your family. You are not alone. <3
I hope you will find a little bit of an outlet here and share more. What you expressed is so painful and ugly … and true. You are not alone in your feelings.
In the back of my mind I think about becoming a vocal advocate for sz. I’m not there yet. My son isn’t there yet. You should think about it when your family is ready, because your post was really well-written. <3
I hear you, very sad situation, for all. Was hard to adjust to the new Mike. Many ups and downs, mainly because he would go off his meds…
But for now he is doing good, and when he is good, so are we, but accepting your loved one just the way he is , helps.
Wow thanks. Very cathartic and peaceful to read and share and hopefully give love and hope a fair shot!!
I feel your pain Sando. I’m not gonna sugarcoat it. It is devastating.
What I can tell you is that my grandparents had 3 sz children.
Both my grandparents were perfectly normal. It’s not like they could forsee such an outcome.
I have no doubt they suffered a lot but they were the best people I’ve ever had the privilege of knowing. And if it wasn’t for them I definitely wouldn’t be here today. And yes, I’m the daughter of one of those sz children, and the proud granddaughter of my grandparents.
Do not despair. Stay strong.
Amen (and a hell yeah!!).
I feel this so much. I try to remain hopeful, but I do mourn the daughter who is ‘gone’. It’s just so hard .
I agree, @Sando.
My parents have been grieving my sister for years, and although they once saw a therapist together for a session or two, I don’t think either of them have told another soul.
It can be such an intensely lonely condition for the entire family.
Yes, I look at old photos and know it different now but the love for her will always be there.
Very well said. I think we can’t stop loving them or crying for them. I am hopeful, crushed, hopeful again.
I certainly feel your pain, but know that there is hope. My son was diagnosed five years ago. It has been a journey-multiple hospitalizations, suicide attempts, different medication combinations-we are determined not to give up. As long as your son is breathing, though it may be difficult for him and you, there is hope. Make sure you take care of you during the journey. It is extremely painful indeed, but there is light at the end of the tunnel. What really helped us was finding the right care team. My son loves his nurse who gives him his monthly injections, so its no longer a battle getting him to those appointments. He also likes his doctor. I hope you can find a good care team for your son and the right meds too. Welcome to the community! This group has been a God-send for me. When others can’t begin to comprehend what we as parents and caregivers face, there is always someone here who understands and can empathize.
Thanks ATRP! Sound encouragement re Care Team. Frankly, when I find someone in law enforcement, the ER, intake, etc that shows a loving heart, it gives me hope. Our last two police officer visits were truly compassionate and seemed to understand the need for not going over the top. All it takes sometimes is just to know that good people do actually care for my son and for us. All things are certainly possible! Keep the faith.
So true! We have had great experiences with law enforcement too. In fact, one of the detectives that helped when my son was missing (the second time) has stayed in contact with us to see how things are going. We remain in touch even though she is now retired. The paramedics, ER staff, doctors and nurses when he has been admitted, have all been so kind and compassionate. To work in this field is truly a calling. I am so thankful for them and glad you have had good experiences so far.