Family and Caregiver Schizophrenia Discussion Forum

I wish I could help, but nothing helps

I wrote about my sister’s mental illness here almost one year ago, and subsequently read Dr Amador and tried to utilize and internalize the LEAP approach, and it did improve our relationship. I don’t disagree or agree with her, but try to understand what she is going through. She seemed stable for a while, but things are deteriorating rather rapidly.

My sister is completely unmedicated and has classic anosognosia. She is in her 60’s and as far as I know she doesn’t have a definitive diagnosis, but she has delusions of persecution and hears voices. She believes one of the neighbours has a grudge against her and told everyone else in the neighbourhood that she is a horrible person and someone set up a website all about her that has “gone viral” so everywhere she goes, people follow her and talk about her and laugh at her. She claims to hear them in the yard at night in all kinds of weather, and they are trying to destroy her home and garden. She has woken at 4 am saying they are pumping poison gas into the air vents. She’s got to the place where she is afraid to leave the house. She is afraid of children because she thinks they’ve all been warned that she’s a pedophile.

I drove my sister to the hardware store today, went off to shop in a different part of the store, and when I found her, she was wild-eyed and trembling saying that people all over the store were photographing her. I just said, “That’s bizarre. What kind of idiot has nothing better to do in a hardware store?” But it is absolutely real to her. She is dead serious and it is just a fact that they will all post those pictures on the website about her. How can she expect people to believe this? How can she believe it herself? I still don’t get it.

My sister was seeing a psychiatrist regularly for a couple of years, but now only has 20 minute phone consults every couple of months. The doctor tried a number of medications, but she could not tolerate any side effects, and besides, in her mind, the problem is the neighbours, not her.

I feel so hopeless and helpless. I make pathetic little gestures like writing out inspirational quotations and motivational affirmations for my sister, and sharing upbeat self-help books. I keep naively hoping that if she reads the right words in the right order, she’ll realize she can choose happiness. In fact, it has become a struggle for me to maintain my own happiness while my sister is unbearably miserable, so maybe the quotes are more for me. I try to plan positive activities for us together like afternoon tea and watching movies of her favourite Jane Austen novels, but she’ll sit doubled over and cringing. I used to be able to lift her spirits and make her laugh, but her negativity is really powerful. I usually see her once a week, and she calls me every couple of days, but sometimes I wish I didn’t have to be around her because it is so draining and takes a day at least to regain my equilibrium.

I read some of the stories here and really feel for those of you who live with your family members every single day, and it’s just relentless. You have my respect and admiration. I keep hoping that there’s a way to fix my sister, but realistically, this is probably originating in her brain chemistry, and only medication might be able to offer help. When she bemoans her situation, I occasionally suggest that she may want to reconsider trying a different medication, as new formulas are being developed all the time, and she might be able to find one that works for her. She believes that she is suffering from anxiety and depression and PTSD from being bullied, but thinks antipsychotic medication is inappropriate. I wrote a letter to her psychiatrist 2 years ago, and she felt betrayed, though I am thinking of doing so again, as I’m not sure what she tells the doctor.

Sorry this is so rambling and incoherent. This situation is really getting to me and my own thinking is getting muddled. I don’t know what I can do any more. I guess I just need some support and understanding. I don’t like to talk about it to my friends because I feel like that just spreads the negativity around and gives it more life, and I don’t want to pass that on to my friends. My partner has been patient, but I understand why he quickly changes the subject whenever I bring up my sister. Thanks for being here, and keeping us all going.

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Gosh, you are a wonderful sister, I am so sorry, these situations can really begin to wear down a loving sister. Your sister does expect people to believe it, because to her its very real, so she does believe it. As firmly as you believe its not real, she- knows- it is real. She sees it and she hears it, how could she think otherwise? We are taught as children that we can believe that what we see and hear are real. Mental illness is less than uninitiated people think it is in some ways, and in other ways, its much more.

Its so hard to give up such hopes, we all want our family members to wake up one day and not suffer anymore from frighteningly real hallucinations and auditory torments. I know that my son does not choose to have scz and its symptoms. My son has found a way to enjoy his life around his severe paranoia and psychosis.

All of our family members with anosognosia seem to have a long list of reasons why they cannot take AP meds. For my son, at the heart of the matter is that he doesn’t know he is sick, why would he take meds? I guess it would be like someone telling me I have to take chemotherapy when I know I don’t have cancer. Personally, I’m not going to do it, my brain tells me it wouldn’t make sense for me to have chemotherapy.

As caregivers we are supposed to remember that we didn’t cause scz, we can’t cure it and we can’t control it. We can cope with it. Sometimes its us that does the coping as we work to keep our lives and our other relationships on track. NAMI tells us we have to keep our own live up and going, its good for our mental health as well. We shouldn’t feel guilty about enjoying our lives, I see it as we are containing the damage.

What a truly wonderful sister you are, your sister is so lucky to have you!

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Hope is right , you are truly a wonderful sister , keep it up as your love can help heal your sister in many ways .

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Thank you for your insightful reply, Hope. Your words help put things in perspective. I keep seeking some logical explanation as to how my sister came to be like this. We were teased a lot at school because we were different, and she remembers it as bullying, as in “I’ve been bullied my whole life and it’s only getting worse”. She began to feel like there was something wrong or deficient with her, that the bullying was somehow justified. Even back then, I tried to convince her that the bullies were only revealing their own ignorance. She wasn’t able to move past that and lived with shame and fear and embarrassment.

I have generally considered that my sister’s response to these early experiences caused her to establish neural pathways toward negative thought patterns. But I’m starting to wonder if that disordered thought processing was already there, and all that happened to her was filtered through that dark world view. She interprets life events in a way that reinforces her beliefs about her own self worth. If the neighbours come out in their yards when she in her garden, they are spying on her. If they go inside, they are avoiding her.

I have such a hard time accepting this state of affairs, that this it the way it will be now. It’s so sad and unhealthy and unnecessary. But there it is nothing I can do to change it other than continue to gently encourage trying medication from time to time.

Thank you for sharing about your son’s journey. It sounds like you have reached a level of understanding that allows you to keep going and maintain your own wholeness and well-being. I hope that I can learn from your example and feel more comfortable within my own heart and stop thinking that I need to find some way to fix it.

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Thank you for your kind words, Linda. I have been feeling like a very unsympathetic, intolerant and impatient sister. I have been guilty of eye rolling and saying “oh come on, really?!”

Focusing on LEAP (listen, empathize, agree, partner…right?) has made a big difference, so that when I listen to my sister and acknowledge how it must feel for her, she then listens to what I have to say more readily.

We have reached an understanding whereby I agree that some of the things she tells me are true (people do avoid her), and some things I consider unlikely (like a viral website about her) could possibly be true. My sister subsequently agrees that she could possibly be mistaken about some of the things she perceives (such as people following her down the street). I encourage her to consider “that person on their phone might be taking my photo, but it is also possible they are just sending a text”. I don’t know if it’s made any difference. Like all of us, she has good days and bad days.

I’m trying to get past the resentment and feel compassion. When you have family history, there are old patterns there.

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Good for you for trying, keep at it, it is a constant struggle. Honestly, I was so very resentful in the beginning I could barely tolerate the weird ideas and actions of my daughter. The NAMI family to family class really helped me with both the resentment and the compassion.

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