Reading the book You Need Help, I realized there were more questions I should’ve asked at the time of the assessment. So far I’ve not been sure what my input should be beyond facts (time, dates, meds, etc) that my loved one has trouble remembering. What are some helpful things a caregiver should inform a therapist of? What are some important questions to ask? How do you communicate with your loved one’s therapist/physicians? Especially if you are not a parent.
In the early days of my own son’s illness I had the same questions. I didn’t have this group at that time so I told my son’s doctor everything. Every odd behavior, every emotional outburst, every sleepless night or every time he slept the entire day. I asked how he (the doctor) planned to proceed with my son concerning treatment. He and I decided with the severity of his illness we would proceed aggressively. I asked what I could do at home to make his treatment more effective and he advised a low or no stress environment with virtually no expectations until some positivity in treatment was evident. He advised to do what I could to keep my son’s other vices very steady and avoid drastic fluctuations when he smoked or drank caffeine. I got my son to stay within 1 pack of cigarettes and 1 jumbo mug of coffee and 1 pepsi per day. Much better than his previous 3-4 packs of cigarettes an 3or 4 pots of coffee and 8-10 pepsi’s a day before he lived with me. All these things can effect treatments. My nerves were bad during this time so I got therapy for myself to learn ways to remain calm and not let my stress adversely affect my son. I also kept a daily journal on y son’s behavior and reactions to medications he was taking…I shared it with the doctor at every appointment. The doctor told me it was invaluable. I hope my experiences help you moving forward. Just to let you know my efforts early on as difficult as they were have paid off and today my son is mentally stable, not cured, but stable and able to function positively day to day with my support. Life is good. I wish you luck.
Thank you so much for sharing. I will take note of the things you mentioned. This is all new to me, getting this far with seeking help, and sometimes I feel like I’m going to mess things up. Was your son present when you talked to his doctor? Did he have any reaction? I’m not sure how my loved one will react to detailing every episode, even though I’m sure it will help give a fuller picture of things. She will only say or remember so much about her symptoms and it’s usually not about the severe episodes. One time I let the assessor know that she hadn’t slept but 2 hours in 24 hours, and she forcefully denied that. I would like to help by speaking up on things she doesn’t remember, but I don’t want it to become a disruptive argument.
I understand completely what you are going through right now. It has been over a decade for me but I can recall it very well. My son was always present when I spoke to the doctor for the most part and he denied facts repeatedly and got very angry with me for supposedly “telling on him” which is the way he saw it like I thought he had done something wrong and I was getting him in “trouble” with the doctor. Fortunately he had a wonderful doctor when he was at his very worst and he monitored our meetings very well with what I call a quiet but firm authority that really worked. Occasionally he would call me at home if he had something he felt was too triggering to talk to me about in front of my son and we would talk on the phone about the best way to proceed. I really appreciated that doctor, those kind are rare. Of course sometimes my son would stay angry at me for a couple days but, I always reminded myself that he was extremely ill and mentally unable to process the true facts and explain them to the doctor accurately, I was his only advocate and I was determined to leave no stone unturned when it came to helping his doctor find the best treatment for him. We actually saw the doctor 2X a week at first and then gradually 1X a week and when he started improving once every 2 weeks. It has taken about 8 different meds and maybe 8 different doctors (as they tend to come and go) but today we see the doctor once every 3 months because he has been very stable for several years on the same regiment of clozapine. I couldn’t have reached the success I did with my son without seeking his full guardianship, it allowed me to be in charge of him with everything medical and monetary in spite of his refusals. I don’t know if you have considered guardianship some places call it conservatorship. If by chance your daughter repeatedly refuses needed care or has access to any money that she misuses I highly recommend the guardianship. My son was very angry at me for me getting it and even told the judge that I was crazy and that nothing was wrong with him. However my son’s doctor and case worker and hospital records and his answers to the judge’s questions said otherwise. I also don’t know if your daughter is receiving Social Security Disability but I highly recommend that if she is so ill she cannot hold a steady job or handle school or whatever, for most patients that is the case. The money and the health insurance that comes with disability is so helpful. Even though my son is much improved he still cannot work, we tried a few trial situations and the stress was too much, even menial jobs, he just begins to unravel which never happens at home now. Anyway, I am just throwing out ideas and things that ultimately helped me. Oh and about disruptive arguments and forceful “denials”. They will keep happening until your daughter becomes stable again. Don’t be afraid of them. Just remember it takes 2 to fully argue so when my son would start an argument I just didn’t engage, I would just say I am sorry you feel that way, and I would often say I love you, but mostly I’m sorry you feel that way. It’s hard for our kids to argue with us about anything when you say that back to them and nothing else and just go about your business or attempt to change the subject. Redirecting is a good tool with our children. I could say to my son as he tried to argue. “Are you still wanting to go get that cheeseburger you mentioned earlier?” and the argument was over…yes he wanted his cheeseburger…cheeseburgers got us out of a lot of verbal battles. Every kid has a weakness lol don’t be afraid to exploit it for all it’s worth. Good luck my friend. Stay in touch.
Thanks, Catherine. This is so helpful and gives me hope. My loved one is my older sister, so the dynamic is a little different. I’m a nonconfrontational person by nature and she’s the opposite. But like you said, as her advocate i have to try everything i can to help her. I hope the therapist she is assigned is one of the good ones. Because of covid, there is almost no in person contact with this clinic, so it’s been frustrating trying to get in contact with the right people there. But with no insurance and low income, there aren’t a lot of options in this area.
Sorry for the mix up, I understand. Stay in touch. I wish you well,
Feeling my hope wane. First she didn’t want to see a female therapist. By pure luck the clinic got a new male therapist. She had her second session today. Now she is uncomfortable speaking to a male therapist who is married and won’t continue. Has anyone else experienced such prerequisites from their loved one? How do you work within them when you really don’t have many options in who the healthcare providers are?
She had agreed to go back on her medications but she barely got a day into it before this, and now she is slipping into psychosis. Not to mention the added stress of us possibly being homeless soon.
It just hurts to get your hopes up, especially when you are so close to making progress and it eludes yet again.
Your words in this post brought me to tears.
Thank-you for sharing your struggles.
Do you know how I start a new/my own Family/Caregiver thread?
Gratitude from Vermont
Thanks so much for your post.
There is a lot of badly needed support and compassion on this site.
I feel less alone in the struggle with my son’s SZ after reading here.
Gratitude from Vermont.