How long have you been on this journey?


#1

How long have you and your loved one(s) been on this journey? What have you learned?

If you could send a message back in time to when your loved one was first diagnosed, what advice would you give yourself?


#2

A little more than six years, four and a half since diagnosis… I would go back to the very beginning before diagnosis and tell myself never to argue with my family member or push them to do things they don’t want to do. I would go back and tell myself to be more kind.


#3

I’ve been on this journey about 4-5 years with my son. I don’t know when his journey started but I don’t think it was too much before then.
What I’ve learned is infinite - and it seems to grow by the day.
My advice to younger self. Stay with his dad, you need to do this together…


#4

Hi there. I have been on this journey for 14 years. So many ups and downs, we are finally at a stable time, for the morning. I would definitely be more into acceptance. Trying to make my daughter live with thr expectation of a person without the illness was not good for her nor our family. Today, I was reading a novel, and came about something profound: why should we life in the presence, go forward, when the past was infinitely better!


#5

Hi, I have been on this hardest journey of my life for at least 5 years, 3 of of these years with my 23 year old son being diagnosed. I wish I had known about calling a crisis intervention when he was psychotic, instead of calling the local police many times and they didn’t do anything when I begged them to take him to a hospital for help. I felt completely helpless, but now due to my knowledge of the disease I feel much more empowered.


#6

I’ve been on this horrific journey for 14 months now and I wish I had been more strict with my son about taking drugs . I was strict but obviously not enough … can’t help the feeling that the drugs did this to him (schizophrenia) … psychiatrists says no but in my heart I feel yes …


#7

Hi Linda, I have been on this journey for over three years and have blamed myself because my son did drugs in high school and I couldn’t stop him, and his dad was out of the picture. I have lately stopped feeling like its my fault and realized many teenagers do drugs and don t get sz. I have read in E. Fuller Torrey’s book that the first thing we parents do is feel blame and we also can feel shame. I have been thru all that and am finally becoming more used to this new hard, strange life. This disease is a physical brain disease and hopefully there will be a cure in our son s lifetime.


#8

About 6 years. The first 4 were figt hing drug abuse and trying to find the right medication. It was awful. Now he has been clean 2 and a half years and it taking clozapine and you would never know he has SZ


#9

All together closing in on about 20 years give or take a year…I have learned that in my case the impossible was eventually possible. If I could travel back in time I would have said to myself to stop neglecting my health all along the way, and not to feel guilty about having to go on disability myself because of various chronic conditions. Once I was home full time it was much easier to try to care for my son and myself at the same time without feeling like a failure on both counts.


#10

It’s been less than a year and I have learned acceptance for this terrible situation he is in, love and compassion for others, love for myself, the impotance of living in the moment, keeping a sense of humor, being private when I need to be and sharing with a select few. I am eternally grateful to this group, because I have been completely lost at times. My son is homeless right now and it’s been 5 days since I’ve known where he is. I’m sad, because I miss him. I wish I could just talk to him like I used to. Like right now I’m crying and I have learned how to let the tears flow and when to say to myself, “I need to focus on the good in my life” I don’t always let myself sink into that deep hole like I did at firat. I was lost in depression just a few months ago. I didn’t think I would ever have a good day again. I decided that no one can get out of life without grief. I decided to grow and florish from my grief.
I have learned that I am different today than before he was schizophrenic. I definitely don’t worry about other little things that I used to worry about. If I can go on living through this pain then I can literally do anything. Thank you for being here and sharing your stories with me.


#11

It has been just over 2 years.

I so very much agree with what you would tell yourself.

“I would go back to the very beginning before diagnosis and tell myself never to argue with my family member or push them to do things they don’t want to do. I would go back and tell myself to be more kind.”

Especially, be more kind.

I thought she would just “snap out of it” if I got angry enough. It didn’t work, and she couldn’t and still can’t “just snap out of it”


#12

Hello all,
I wish I had known that scizophrenia ran in our family. My family has been covering up this illness for along time, like it was some kind of dirty secret. Maybe if more people were aware there would be less stigma and more progress for the illness.
My oldest daughter has a 4 year old son and she is concerned for his future, at least we are aware. My youngest daughter is undecided about having any children.
My son, he is the one who is truly suffering. It has been almost 3 years, maybe if we had known earlier, there would have been help sooner. as I’ve mentioned before, Lou is currently facing a forensic commitment, maybe for the rest of his life. Sorry for the sadness, at least you can all relate. My grief seems to come in waves.
take care annie


#13

My son and I have been on this journey for about 4 years. Although, my son had probably been suffering for about 10 years. Ten years ago I was in a bad spot. I let my focus shift from my 16 year old son to myself. I will always regret that. I prolonged his suffering. I would tell myself…straighten up and fly right.

I have learned much. Schizophrenia merits the same consideration as any other life threatening disease. It is a horrible disease and those who suffer it are brave souls.


#14

In my sons case he did drugs or drank to get away from the voices in his head. You never know what comes first… the disease or the drugs.


#15

My brother was diagnosed around 15+ years ago. I’m the younger sister so my understanding and involvement with his illness was limited. Sadly, our family mostly just swept it under the rug. My brother has spent most of his adult life in board-and-care with a few years spent with our Mom here and there.

I moved out of the country for several years, but recently we have moved back and started visiting him regularly. I was surprised to find a different person than the ones our older relatives described. I don’t remember much from when he was younger, so I think his ‘quirks’ have been easier for me to accept. I don’t really know a different version of him.

The relatives that have more experience with him at his worst say he seems to have learned how to cope a little better with age. We’re hoping he may be able to try out living with us soon.

It’s a long and slow journey to wellness and some days you might feel like you’re spinning your wheels. Try to keep this in mind:

It was only 40 years ago that NAMI was founded.

20 years ago this site was still new.

15 years ago Facebook was barely getting off the ground and Clozapine was approved by the FDA.

10 years ago the injectable Invega medication was approved by the FDA.

Each year brings us closer to improved medications, more treatment options, new therapies, and new theories to test. Each year brings a little more progress, better support networks, and a little more understanding of this illness. Try not to give up hope. :peace_symbol:


#16

We’ve known it was scz for 5 years, he’s been showing signs (now that we know they were signs) for 18 years. We know for sure his voices started at least 9 years ago.

Dear Past Me, Just like from the beginning of parenting, there are going to be times when you don’t know what is the correct thing to do. Be kind to yourself and don’t pressure yourself to have the right answer where none of the possibilities seem correct. Remember that you know Jeb better than anyone. Listen to what others have to say, you could be wrong and you need to realize that is a possibility. When in doubt, don’t act unless you are 100% sure. You won’t regret actions you felt 100% about taking. There are times when you have less power than you realize, and other times when you have more power than you realize. Good luck figuring it out.

PS Delusions will be more troublesome than you realize.

PSS You must learn how to keep living your own life - it should probably be your priority but you always put it last.


#17

Diagnosed almost a year ago. First break about 1.5 years ago. Looking back it probably started about 8 years ago or even more with little things - like thinking I was a terrible mother and that I abused him as a kid.

I don’t think I could have done anything differently, however, I think I should have let the hallucinations subside before I took him to Windhorse - an organization for helping those with MIs get work. But this is how we found out he was hallucinating. For him, going through getting fired didn’t help. Basically, she told him to go on meds or not continue to work and this put the tailspin on things.

I’m struggling to come up with something I’ve learned from this. I think - you know how you’re always thinking things will get better (in life in general - I’ll get that new home, I’ll paint that better painting, I’ll have space for a garden) well now I think the better was in the past, which is making me try to appreciate the now.

Below is a good way to deal with having too much fall on your plate. I got this from this site. Forgive me for not referencing who these came from - I only copied the verbiage in my how to deal with document. Please take credit if you’re reading it and these are your words.

I now liken coping as a stress bucket. All the ‘worries’ go into the bucket and we cope. But if too many things get thrown at us in quick succession, the bucket gets full and the slightest thing causes it to overflow, at which point we throw our arms in the air, cry uncontrollably etc.

Having to care for somebody with sz puts a lot in the bucket to start with. It waxes and wains but never goes away, so just a few other ‘worries’ causes overflow.

To manage the bucket, deal with the trivial things quickly, or offload things to somebody else. Just talking can reduce the size of the things in the bucket. If the bucket does overflow, then take a specific worry and focus on solving it, forget everything else, you’ll be surprised how soon even the biggest worries become trivial. Every worry solved comes out of the bucket.

Here is another quote I believe I got from here as well:

You have to have patience, and you have to have grace, and you have to be willing to forgive others and forgive yourself. That’s the goal.

Just reading those help me.


#18

Sorry about the large font - wasn’t intentional!


#19

6 year journey, he is now 27. I didn’t know we were on a journey initially as he was depressed and lethargic. Struggled to get him to finish high school. He tried the army and they sent him home. I should have pushed to read his DD214 maybe there would have been a clue to a diagnosis. He did not admit to hearing voices. I pushed him to work or school. He did neither so I kicked him out. I wish I asked more questions about what was going on.
He was taking/selling drugs and finally walked into an ER and then I got a diagnosis and could help him. He resisted help at first - be kind to your self if they do, you can’t help them until they really want the help (that was 1 1/2 years). Then 4 good years of him taking meds, no drugs and becoming more independent.
Take care of yourself, read everything you can, talk to NAMI people, you have so much to learn. Here is another good place. Take what fits for your situation. You are the best thing for your child. Don’t be so rough on you.


#20

24 years since diagnosis but my dtr had issues since being a small child. She has been fairly stable through the years, never having been hospitalized. If I could send a message back to myself I would say to learn more about this disease, and not to be overprotective but to give her opportunities to be independent if possible.