“Parents agree that recovery is when their son or daughter has some measure of stability. There is no cure for brain disease, and symptoms often recur, but accepting and learning to manage one’s illness is success. Addressing recurring symptoms and moving forward each day, even if by inches, is success. Having routine and purpose, and satisfaction in one’s life defines recovery. Getting to that goal happens day by day, and those who embrace the journey are to be admired”.
Also
“Recovery involves a new and valued sense of integrity and purpose within and beyond one’s disability”.
For those of us who deal with anosognosia…
“There is no difference between the level of function or happiness from acknowledgment.”
My son’s doctor recently - “he has routine and purpose in his life - this is recovery” His examples were, he works to progress on computer games, he practices an instrument with a dream of playing before people at an open mike event. He has learned from CBT how to grocery shop for his sandwich makings. He is setting goals and working on them.
I called my friend the former FtF instructor and asked if she would advise us regarding parental expectations. She has so much experience and is a tremendous resource.
She said that too often we parents become involved in pushing to rush our loved ones back on the traditional track. Get them on meds, get them back out there in life. She says we just discourage them and frustrate ourselves in the process. She says we miss the actual progress for many of our “Kids” because we have set a bar too high and we are pushing for a time limit for big projects when reality is that it can take years for a small step forward. Basically she says, as parents we tend to miss the reality of progress.
This sounds like bullet points on a slide at a psychology lecture
But then again, I’m a very practical person so I’m all about living each day well, rather than thinking about what it’s all about.
So, for me, somebody has recovered when they can, with an available level of support, achieve the basics of existing in their environment, in the society they live in. In a modern thriving capitalist society (the UK) that means, being able to cope with their chores, keep themselves safe, clean and fed, manage their finances, and be able to interact with others in their society without causing distress or alarm. Beyond that, it’s growth.
My son listens to his music, he takes photos of our dog, he went to his appointment by himself yesterday and even better came home via shops picking some wraps up for our dinner.
More over I shouted out his window as he approached the house and he laughed at me and that was after his appointment! I’m happy for this and remind myself that “recovery “ means what we feel it means, what we think it means.
Thanks for these (yes - I just went through my phone notes where I jot down stuff I have found along the way as I tried to get my head around scz)
I consulted my FtF instructor friend for the filling out. Bless her heart, she is so deep in mourning for her son, she was kind enough to say it helped her to have the distraction.
@Squid
Sorry, I wrote down all sorts of things I would find in the early years when trying to get my head around what was happening with my son. I wish I had written down the sources. They were more to comfort me at the time. I still pull up the notes app on my phone and review them.
I like the 4 C’s for caregivers too
You didn’t CAUSE it.
You can’t CURE it.
You can’t CONTROL it.
You CAN COPE with it.
Coping seems so small to newbies- it’s actually huge when you get there.
As a mum I have stressed over the first one, cause.
I’m sore I could rationally assure anyone else but I go over stuff like,
Was it his birth , did labour go on too long,
Was my diet and mental health bad in pregnancy , I moved away with hubby and was very lonely as it was a new place and knew no one except him,
Was it him being an only child, did I love him too much,
Did I worry him with stuff, did I promise I would take his worries away too often ,
Did I put my stress into him, did he hear me be negative about too much,
Should I not have had him, is there something genetic I passed, all of these but if anyone else asked me if it were them, I could rationalise to them.
Oh, I hope you don’t put yourself through all that. Just think how many people in those exact same circumstances and far worse circumstances did not have children who developed severe mental illness, like 95%. Mental illness is medical illness and I personally believe the epigenetic hypothesis (combo of genes and environmental factors).
I considered my son recovered when he said he no longer heard voices or saw visions and when he could speak in coherent sentences and understand what I was saying to him, all of the other little positives that have occurred beyond that has been ‘icing on the cake’ in my opinion.
I know how you feel. I keep thinking back to how I didn’t push in the hallway on the way to the delivery room, I could feel the baby was ready to be pushed out. If I had pushed, would we have avoided his birth trauma? Would that have made the difference?
Hereandhere is right, we have to not put ourselves through “all that”. Setting it aside takes practice and we need to practice when it starts up in our thoughts.
My other son had a normal birth and was born with autism. Other people in both of our families are on the spectrum. We have scz on my husband’s side -could be its on my side too, so hard to say when people have historically kept such things quiet. The one thing that does give me hope that maybe Jeb can succeed in handling his illness unmedicated is that his great aunt and his grandmother did to some extent. They struggled, but they functioned on some days -while hiding away in their rooms on most other days. Everyone shook their heads because they thought it was alcoholism. The smoke from the nonstop cigarettes came out from under the bedroom door as though there was a fire in the room. The times when my FIL told us that MIL -we thought had really tied one on- and tried to attack him, were never spoken about after they occurred.
There is no known kidney disease on either side of our families. My sons were born with an obviously genetic based kidney disease - we know this because they both have the same disease. When we donated to our sons (its a lot of answering the same questions over and over with different doctors and medical personnel, the testing to be a donor is really thorough) They initially speculated that my children didn’t belong to my husband - they actually let me know in private before the DNA matching that it would show up on these tests if he wasn’t their dad. The tests showed he was their father and was even a better match than me for donation. He donated to one of our sons, and I donated to the other.
So, a totally unknown kidney disease popped out out of nowhere.
Dear, dear, Jane57, if we can’t control it and we can’t cure it, you and I have to embrace that we didn’t cause it either. We have to let that go.
I really admire you hope, you make such sense too.
That’s quite a lot you all have been through and yes I agree we can’t go over and over it, I will do that less now. It is what it is I guess.
I hope Jeb is doing well right now.
We know have had exactly a week without blame, delusions voiced animatedly and general rants, so that’s good.
@Jane57 I admire and envy you Jane, the medical support you get in the UK sounds like something out of a dream. Why the people of our country won’t embrace a real national healthcare system, I do not understand. Even with all that medical support, you and your husband still have to keep your son involved in life and on his meds, and research to be sure they are the right meds for him.
You and I will both try to do less self blaming.
Your son has had a good week, I am so glad.
Thanks, I hope Jeb is doing well right now also. We have not heard a thing. I know that this sort of major change would mean he would need to totally shut down and just focus on each moment for several weeks. I have not texted him because I know he will text when he feels he can handle a text back from me. I need to know where to send his February rent money (I’m his payee rep). And I need his address so I can change his address for the government forms.
Oh hope it’s constant , You are wise to this and to know when it’s “worth texting and when it’s worth saving energy and waiting to get that cue, or go ahead responding to how Jeb is at that time.
Yes we are lucky here in the UK, I often think of you guys and how much more difficult you have it, I think perhaps though your doctors, consultants are more forthcoming ? I thought maybe it’s something to do with insurance . Maybe not though.
I’m not gloating but yes it’s been free with regards to hospital admissions, family therapy, psychiatrists app , medication . I say free meaning we don’t pay directly but it’s all take from the nhs pot .
I think that’s around 7-9 % of a regular salary that’s deducted. Of course it’s for everyone though whether we pay in or not.
Hubby pays in with him being employed but son and I don’t. We have donevwhen working though .
Yes it’s treat people here rather than ask them to pay.
Hope it’s a good weekend for you and Jeb is safe and well.
My friend the former FtF instructor would applaud you for recognizing your son’s progress.
Congratulations!
Did you read what Hereandhere recently posted on the “how do I deal with the sadness of my sadness of my son’s schizophrenia?” I wish I had that sort of explanation of psychosis years ago.
