She was doing so well. She loved me and we talked on the phone for hours. She had a bilateral mastectomy, chemotherapy and was on the expensive shot. Her care provider sent her home with a pamphlet about the side effect, and she asked to be put on oral meds. She thinks it caused the cancer. Next visit she said she wanted to switch to the oral medicine. So she could quit, that’s the reason. She also quit her cancer meds. Then she gave her belongings.away and moved into her car. And moved a thousand miles away. She has plenty of money. This is her choice. All she does is lay in her car and go to a restaurant when she’s hungry. I call her. Sometimes she answers. But she has nothing to say most of the time. I don’t understand. Why did the care give her that pamphlet without going through it with her. There is an increased incidence of breast cancer with women who have schizophrenia. Her second cousin had schizophrenia and died of breast cancer. She won’t go to the doctor and she doesn’t have any activity. I just got off the phone with her and I can’t stop crying. Do people with schizophrenia enjoy the experience? Why do they quit taking meds? I know it’s common. Thanks for listening.
Same here. I spend a lot of time with my son. He has been taking meds for the first time ever! He is nice to be around. He has only taken them for 2 months and I felt hope.
If he quits taking them I don’t know what will happen to him besides jail or being a victim on the streets.
I’m really scared.
Last year he flew to Switzerland to be homeless in January
The unending stress
I’m so pissed when I realize I had a good day yesterday and I didn’t celebrate it because today is full of chaos
I feel your pain. My mother has macular degeneration and has been having Eylea injections since 2015, to maintain the status quo in her bad eye (left) and prevent loss of central vision in her good eye (right). She was due to have cataract surgery in April. However, she went off her medication, and now believes that the injections were causing her inability to read (not the cataracts), and she refuses to have the injections or the cataract surgery. Off medication, she is withdrawing (spending the majority of time listening to the voices) and it’s heartbreaking to see her disengaging from all that she enjoys (walks, playing cards with friends, etc.) and knowing she is going to become legally blind without treatment for her eye conditions, making her existence even more meagre.
I need to feel that I am doing something, so I tell her that I love her and do what I can for her, and I joined this forum and am trying to learn new things to broaden my understanding of schizophrenia.
Have you heard of L.E.A.P? Listen-Empathize-Agree-Partner) communication strategy:
Anyway, I am sharing because I feel that might be one way to reach my mother, and perhaps others might benefit from learning about this as well.
This is out of our control, but we can do what little we can to support our loved ones. Even through the challenges, the message of love gets through.
Wishing your daughter the best, and hoping that something positive happens for her soon.
Yes, THIS is why many with SZ don’t take meds. Their brain tells them they are not sick! It is not logical to us, but it IS to them, because their brain is broken!! You must do the research on this to understand it before you can have any hope of helping someone with this condition called ANOSOGNOSIA. It affects 50% of persons with SZ!
@Lynne_Benson I’m glad she was getting good care, if this link works, this paper suggests that people with scz often get substandard treatment. It does sound like this wasn’t the case for your person at all.
My son doesn’t take his meds because he has severe trauma and abandonment issues, and is afraid to not hear the voices because to him they are the only constant in his life. More commonly schizophrenics don’t take their medications because they hate the side effects, believe that the drugs will someone ruin or steal their personality, don’t have the money/resources, or have a delusion that the medications are poison/etc. It all depends on the person. Many schizophrenics that also have other health conditions (and a few that don’t) believe that their life is already over in a metaphorical sense and that taking medications and caring for themselves in other ways is a waste of time and effort, or that they’d be better off dead but don’t have the resources and/or mental preparedness to directly take their own lives. Anosognosia is also sometimes a factor.
A friend or family member refusing to take their medications is a very sad thing, and it can be very draining. Please know that it is not your fault and that you need to take care of yourself, not just try to take care of someone else that won’t do it themselves. It sounds harsh but while you should continue to offer lots of love and support you need to remember that your mental and physical health is also important.
Thank you for that, sorry so late. I wonder if some like the experience. I wonder if they remember how they acted when off meds. My daughter would never use foul language, ever until a psychotic episode. I think the possibly she moved so far away from home is that she doesn’t want to upset us.
Also, I came to the same conclusion. I can see this situation in a much better light when I am feeling well. When too many stresses happen, all I have to do is think about her to start crying. I am now texting her and/or calling her. Everyday. She is starting to respond. I read that symptoms become more manageable with age and she is 45.
I wonder, is there a way to reply all?
WoW! Switzerland! I live in Arizona and now Oregon doesn’t seem so far away. I hope he stays on meds! Does he take them on his own? Thank you for responding. It took me a long time to settle down enough to reply. But I read the comments right away and felt not so alone. Actually I felt better as soon as I wrote my first post, before anyone read it! I hope you are having a good day!
I have experienced anas… myself. A few days after a concussion, I was at work. I worked labor and delivery and was taking report on a very complex patient…I understood what the nurse was telling me, but it passed right from my brain…like I didn’t push “Enter” Why didn’t I say, “There’s something really bad wrong, I gotta go to the ER” I can’t understand even 20 years later.
She was. It was paid for by the State. My mother died and left her plenty of money, so she cant come back to Arizona and qualify for Medicaid.
Thank you for the valuable resource. I see that contributing to this forum is a part of doing my part, no that you mention it. I felt so much better after writing my first post, before it was even read. I read the responses immediately, but was still overwhelmed for awhile, and that is why this is late.
No worries. We all have a lot on our plates, not to mention a worldwide pandemic, so no one should be put off if there are no follow ups. We drop in, when we can, to exercise a little give and take — and then go back to our busy lives. It’s nice to have a place to express anger and sadness and frustration and hope and encouragement, where people struggle with similar issues & can understand, in a way that our friends and colleagues may not be able to fathom. It’s also important not to let this subject consume us and take over all our thoughts. It’s good to spend some time away from the forum as well. A balancing act. Our loved ones are going to do what they are going to do, we cannot live their lives for them. We can only try and support them as best we can, and remember to live our lives — as nobody can live that for us. <3
Very well said. Sometimes I need this forum as either a resource or just an outlet, and at other times, I need a break. But I come back to see what is happening with others, to give encouragement, and hopefully to offer helpful information.
@Lynne_Benson You might want to look up posts on this Forum about finding missing persons or intercepting persons with SMI (serious mental illness) who are homeless. You may find such comments on various threads. The key to getting help for such a person is typically that they are sick enough to be taken to a mental health facility (sometimes they commit a crime and are taken to jail first) and there they might get the help they need.
Here’s what you CAN do:
(1) Try to stay in touch with your loved one. You have to learn how to talk with her in way that retains her trust. Telling her what to do against her wishes is not going to help. (Read the book "I’m Not Sick; I Don’t Need Help and everything else you can read about anosognosia.)
(2) Try to learn where she is physically located and anything you can about her environment and her contacts. You may have to do that subtly so as not to seem to be “prying”. Keep records.
(3) Google “Homeless And Missing Mentally Ill: A Guide For Relatives”. There are several resources that pop up.
(4) Create a detailed written document that outlines her mental health and medical history. Use FACTS and DATES that point to how sick she is, including her medical diagnosis and that she stopped taking the meds, living out of a car, or whatever. It should include her diagnosis, medications (current and prior), contact info for doctors and hospitals. Make it easy to read.
(5) Contact all the resources you can find in the area where she is staying to alert them to the possibility that your daughter needs special help. Look up mental health departments for the location(s) where she is and find resources there. Contact hospital psychiatric units. Even contact security personnel at places where she shops or gets food (Have they seen her? Would they be willing to call 911 if they observe anything wrong?) When you get the right person on the phone, be polite and brief about why you are calling, but give them as much information as they will take. Offer to email info to them, including the document and or poster that you have prepared.
The purpose of all this is so that your loved one will be picked up and ADMITTED to a psychiatric facility.
I just got off The phone with my daughter. She sounded unusually bright and happy. We talked briefly. She called me back one minute later and said did I tell you that I’m back in Arizona? She is living with an elderly man who rescued her when she was homeless and sleeping in the corridors of shops. She says she feels grounded there and isn’t going to visit me for a while. So happy
That is a huge relief, @Lynne_Benson !! Thank you for the update.
It’s good you’re able to express your worry and concern here.
Your daughter is resilient and I’m glad she reached out to let you know she was doing alright.
Even with the pandemic, you can always offer to drop off supper at the door if there are certain dishes you know your daughter likes and would appreciate — if you happen to make extra that you can spare for her and the elderly gentleman — only if they are close enough, of course.
Don’t count on the elderly man keeping her forever. I’ve seen situations where well-meaning people try to help, then when they realize the person is not doing anything to help him/herself, or perhaps that the person is using non-legal drugs (I’m not suggesting your daughter is), they wise up and evict the person, not understanding the kind of help that is truly needed for someone with SMI. But at least she is safe (??) and you might be able to find out where she is. Perhaps you could talk with this man and try to get her help. I know, it is a difficult road.
did I ever thank you for this?
You are sweet to get back to me, Lynne. How are things going?