No I haven’t I will read it sounds helpful
I will remember the 4 cs Thankyou
Good to have a bit of definition for recovery.
Good to be reminded how long it takes and to appreciate very small changes.
Good to be reminded not to push them out into “the world.”
Let them create their own world.
I’m still meditating on the subject of recovery.
Found this article this morning on fb:
It made me think.
The former FtF instructor really stressed how recovery and progress are so different from person to person. Like the blog you linked, our family members are comparably trying to climb mountains doing things that other people take for granted.
Family to Family taught that progress can take years and our expectations needed to be reasonable. There was a collective gasp in the room when the instructors said we could reasonable expect our family member to do “maybe” one chore a day. My instructor friend said her son’s long term goal was to return to his university. While other families may see step one as applying to a school, step one for her son was getting out of bed each day. Step two was a daily shower. Step three was dressing daily in clothing appropriate for leaving the house. Each step can take years.
The first time I heard that at Family to Family - I felt like a huge weight had just landed on me - must have been reality hitting hard- lol
When Hereandhere posted that our family members need a reason to leave their personal realities, I thought about all the concerned family members that have posted, “my family member stays in their bedroom all day long doing nothing”. I know when my own son has had a bad episode, he will retreat for 3 or so weeks to recover. Maybe we all have to wait for them to find something they want badly enough to take on the job of tackling their brain disease to do it. The brain damage varies from person to person and they have to figure it out themselves and want it for themselves.
My son’s current desire is to not live near us, his parents. HIs delusions are that we are doing him harm and keeping him captive here. To be able to leave, he was willing to do cognitive behavior therapy to help him shop for groceries for himself - something he had not done in years. His only motivation is his own desire to not live here. The effort to go to an hour long therapy session every two weeks would totally wipe him out until the next appointment.
The constant message we caregivers hear is “slow down”, “its a marathon not a sprint”, is really a wakeup call for us to try harder to understand this brain disease affecting our family members.
I think we who know them best can figure a lot out, but we need to listen to the people who do specialize in this illness and who are working with our family members. You never know, they might be right about something. They need to listen equally to us so they can get a more complete picture, we want them to think we may be right about something as well.
My son’s current doctor has no problem with contacting me and advising me based on his personal observations and my faxes. All caregivers should have this sort of access.
The carry away should be that our family members with brain diseases are all different and progress and recovery are different for everyone.
Post pics of your crochet pieces!
I asked again at his pdoc office yesterday, if they had any more information about groups? Turns out they had a handout with the NAMI meeting date and location. It’s right there!!! At his pdocs office!!!
I talked with husband about attending another (different agency, but scz related) event, he declined, and asked for me to not attend as he was “worried about the traffic”, etc. I get it…to a degree.
The NAMI workshop though…that’s at his pdocs office location! (UCI Medical Center)
Thank you for your detailed and informative note. I’ve printed it off for review and meditation as I’m sincerely troubled by “what to do”.
It seems you understand where I’m at. Thank you for your patience and understanding.
I’ll get it!!
I’m not that good, but have been doing this for years.
I hope that tonight I can putz a few times around on son’s afghan. He picked a simple stitch: granny squares, and colors I like, so this one is enjoyable.
Last one was orange. (YUCK!)
I’ll see what I can post.
Thanks for your support and joy!!
Granny squares can be a lot of fun!