Hi rosyd, Yes, not for the weak indeed. The caregiver three C’s help keep me on track. We caregivers didn’t Cause it, we can’t Control it and we can’t Cure it. Back in the day when I filled in as a “moderator” at a NAMI support group I used to add, BUT we can figure out how to Cope with it. New members would look so disappointed. Coping may not seem like so much to the new caregivers, but it is everything once you can figure out what you can do to help and you get that new normal on a better life track for family member and caregiver. It always seems to involve giving up some things (that you didn’t want to give up) and adjusting to new circumstances.
Your son sounds a little like my son, on lighter cycles my son does seems to realize something isn’t right, because of my son’s anosognosia, he just confabulates it to be because of something else.
I’ll add the exact same goes for the DXed. Recovery means developing coping mechanisms. No treatment regimen completely cures or controls the disease and even if we did something to cause it like substance abuse, we can’t go into a time machine and take it back.
Thank you so much for those C’s!!! I was not able to pass completely over those guilty trips. Some days I acknowledged that I didn’t know anything and the message about "life didn’t come with an instruction manual but with a beautiful mother’ didn’t think apply to me but going to the source of strength, Jesus Christ for me, helps me recognize that I really can’t control what others feel or think and I have been given tools and received kindness to cope.
I really appreciate you for sharing that part of your life with mental illness; it’s an adjustment for all of us. I’m thankful that we’re not alone and we can share our experiences unabashed.
My son is exactly as you said: he always find a reason to confabulate!
Again thank you for those C’s and for being a part of this sphere.
Take care.
God bless you!
My mother willingly took medication for many years. She believed it was to help her with brain functions and allow her to fall sleep (she took it before bed as it made her drowsy). She knew that she had “mental health struggles” but believed she had some sort of PTSD due to past trauma. My mom did go through a lot of trauma in her life so that part is true and helped motivate her to continue with treatment. She also experienced typical SZ symptoms (paranoia, delusions) but has never had insight about them.
About 2 months ago, her father passed very suddenly from cancer. He was only diagnosed a few months before he passed and seemed to be in good health prior. As a result, I believe my mom now has a fear of developing any physical diseases. She stopped seeing her psychiatrist and taking her medication because she believes prescription drugs are “unnatural” and harmful to her physical health. She takes melatonin for sleep and a bunch of different vitamins (since those are all “natural”) and thinks that is enough. When I bring up her mental health/trauma, she says she no longer struggles with it because “God has given her the power to cope with it without needing medication.” Since my grandfather’s passing, she’s been hospitalized once and stayed on medication for a month before going off it again. Truthfully, I am devastated because I got used to having my mom back over the past few years. Now she just isn’t that person anymore and I feel incredibly overwhelmed. I’m still in university and don’t even know how to be an adult sometimes let alone a caregiver to this illness.
My brother thinks he’s talking to the dead. He’s doing hard drugs but we don’t know which, we suspect meth. Mom was sad because she wanted to send him birthday money (his birthday was a few days ago) but didn’t want it going to drugs.
He says the voices tell him not to take meds or it will hurt his psychic abilities. It’s really hard losing him like this. He doesn’t seem to genuinely listen to anything we say.
He needs to go in for a diagnosis but won’t go to the doctor’s.
It’s really tough to see a family member’s life taken by this horrible disease. I wish you luck finding someone willing to clean up for your brother in the future.
Anosognosia makes it so difficult for our family members to agree to take meds - or even go see a doctor. Confabulation isn’t just something they make up to tell us, like your brother thinking he is talking to the dead, they earnestly believe the confabulations.
We are taught to believe what we actually see and hear, its a harsh reality that the voices register on their brain exactly the same as a real person talking.
I’m sorry your brother has turned to street drugs for relief, our family members can become addicted, making your family’s struggle even harder.
Are you using Dr Amador’s LEAP techniques when you talk with your brother?
Your mother taking medication willingly for years is what we all hope to achieve when our family members have scz and the symptom anosognosia.
Your father’s relatively sudden death by cancer would have been an incredible blow to her world. Possibly it has launched your mom into a “new” normal. When things change drastically with my son, I am rarely happy to have another new normal that will require changes and new coping plans for me while my son adjusts and works out his own coping plans. (with thanks to @Maggotbrane)
My FIL’s father died in his early 50’s of a sudden heart attack. My FIL(who didn’t have scz) became extremely fearful of dying. He began going to different doctors wanting to be diagnosed with conditions that didn’t exist. He became a victim of hypochondria. He was convinced he was dying and stopped doing a lot of activities he had enjoyed to concentrate on his health. FIL’s concern and anxiety was so real that it began to create a rift between the family members. Some of his sons took him to the Mayo Clinic, when they didn’t find anything wrong with him, they took him to another major diagnostic clinic and still didn’t believe the results.
The hypochondria never went away, when he died in his mid 80’s it was because he fell and tore his intestine.
I am so sorry, it is devastating to have to deal with your mom’s new normal - “new normal” seems like a mild phrase for the major change you and she are experiencing. Remember, its very important, you have to remember to make sure your needs are taken care of going forward. The first lesson at NAMI’s Family to Family is that caregivers must prioritize their own lives. I know, its not easy, but it is possible.
(Edited to change hypochondriac to “victim of hypochondria”)
You are so welcome, its been nice chatting with you
The first time I heard a message like “life didn’t come with an instruction manual but with a beautiful mother”. I was a little resentful. When I was young, growing up to be someone’s mom was quite important to me. Years later, I’m not resentful. God knew this son of mine needs someone who was very interested in being someone’s mother.
Also, in addition to what @Maggotbrane said, our journey is not for the weak of heart, but, our family members have a much more difficult journey and I have come to consider my son to be by far, the much stronger of the two of us.
Hi Hope,
In your reply you brought up a very interesting fact, I know we as parents have a hard time but the sufferer himself/herself takes the hardest part.
According to our beliefs from our church we were given the chance to come to this earth and be proven, so we chose our parents and family! I belong to the Church of Jesus Christ of Latter Days Saints; it helps to know God has a plan for each one of us, but it’s hard nonetheless.
We are trying to do the best we can I hope we can endure well.
Thank for allowing me to chat with you also.
Take care and God bless you and each family and love ones.
I hope you have other family members and friends who can share this with you. If necessary ask for it. You must complete your education as best you can to sustain your own life. Make sure your professors know what you are dealing with. Don’t let the stigma of mental illness stop you from getting the help YOU need.
Thank you for your response. Your words were really helpful in helping me keep things in perspective and reminding me to prioritize my own health. You mentioned your son also adjusts and works out his own coping plans. May I ask how he goes about doing that? Does he work with a counsellor or other mental health professional or does he just figure it out on his own? My mom refuses to even speak to a counsellor or any mental health service.
Admittedly, asking for accommodation at school is something I’ve always struggled with, but I’ve slowly been working on being honest with my professors when I need extra support.
Unfortunately, there is no one else. My extended family lives about 2 hours out of town. They have their own health issues to deal with and there is also some mental health stigma they hold which prevents them from understanding what support my mom really needs. I have one friend who knows the details of my mom’s illness but I don’t think it would really be fair to ask a friend to get involved in such a mentally difficult task. I’ve recently joined an online support group for loved ones of mentally ill individuals so I’m going to see how that goes.
I found joining Nami and getting to know other people struggling with these similar family issues was very helpful. They are a terrific organization and if you can manage to do a Family to Family course - it really helps with the big picture of mental illness and support from other people. I hope your mother can allow some help in soon. Look after your own health.
We were really fortunate. The psychiatrist that diagnosed my son specialized in severe mental illness. My son wouldn’t take meds, but he did listen to the other advice when the psychiatrist told him CBT would help him when people in grocery stores were yelling at him. He found a therapist that taught CBT (Cognitive Behavior Therapy) and was eventually able to grocery shop for himself.
When my son’s scz had advanced to the point where he became disabled (really bad psychotic episode at work), we brought him home to live with us (even though we had no idea what the problem was), he told us he had social anxiety and depression.
He lived on our property for nearly 3 years in a small apartment we built for that purpose. I think it helped that during that time he did not work and he had a chance just to focus on himself without having to live with other people. Except for bringing him his groceries we left him alone unless he asked.
He does still work with therapists from time to time. When he does, its something he arranges himself.
Several years ago I had to adapt to prioritizing my life over his, its not an easy thing to do, but it made me a better caregiver. Take care.
No, but I do own a book that I think talks about it, I think it’s called I’m Not Sick, I Don’t Need Help. I’ve only read the first ten or twenty pages, I need to revisit that book so I can learn more about LEAP. Thanks for the tip.
Is the non verbal behavior possibly an indication or precursor of catatonia? Although less common, catatonia can be a manifestation of schizophrenia. My son has it.
No, she is not catatonic nor heading that way. She fixes her own food and communicates when she wants to through gestures. It seems she can’t access words. As a child she was dyslexic and had trouble retrieving words. That seems to have been extremely exacerbated - possibly left brain damage?
Hi Hope, somehow I loose track of the threads if I don’t mark them to read later, I have come across some very interesting groups and title books but later on I don’t find them easy again.
I didn’t realize that on this relevant issue about “unmedicated loved ones” there’s plenty of us relatives with our sons/daughters similarities regarding the ‘interesting use of the toilet’!
Even the ‘dressed up warm in summer and very light during winter months’!
We’ve gone through that also.
I love this platform, reading it I realized that someone is dealing with more unpleasant and uncomfortable same issues but also those that are finding the alternative holistic approach with vitamins that help the positive symptoms and make life a little easier.
I’m trying to keep the hope as I’m reading about others successes, small sometimes but nonetheless a step forward.
Hello Hope. I’m new and this is my first post and I’m almost in tears. I have that son too. He hears voices that make him do irrational things. It was all self contained among family until today. I don’t like NAMI’s advice to you about staging an event, but I understand. I don’t know what to do either. Thank you for sharing so I know I’m not alone. But now you know you aren’t either. I will keep you in my thoughts and my prayers as I pray for mine (or whatever good thoughts you would have). Take care.
