Family and Caregiver Schizophrenia Discussion Forum

Is inner peace possible in the face of tragedy?

I’ve been trying to get up the courage to share my story here, though it is not unique, there is comfort knowing we are all in this together.

My sister (in her 60s) has a delusional disorder that has been gradually escalating over the past 20 years, starting with thinking that security guards were following her in stores, and then believing that neighbours in their yards with cell phones were talking about her. It escalated a few years ago with claims that she hears people talking about her, saying she is a pedophile, and calling her the “rat lady”. She thinks there is a website where defamatory claims about her are posted. In the past year, she began thinking that people are using infrared rays to track her movements, trespassing in the yard and doing acts of vandalism such as spraying harmful chemicals to kill plants, and randomly clipping shrubbery. She also thinks they break into the basement and attic and remove support beams to try to make the house collapse. She hears voices, and yells at them in the middle of the night. She has called the police on several occasions.

I wrote to her doctor ages ago about my concerns, and my sister was eventually referred to a psychiatrist. She was tried on a number of different medications, but could not tolerate any side-effects, and is presently on no medications. She said she feels so much better being off all meds, except that the neighbours are getting worse and worse, tormenting her 24/7 now.

I am reading “Surviving Schizophrenia: A Family Manual” and trying to understand what is going on. Not knowing any better, I initially tried to convince my sister that she was mistaken in her delusions, but it just made her angry. It is very important to her that people absolutely believe everything she reports. It’s complicated for me, because she is my annoying little kid sister who used to get on my nerves, and I realize this all began years and years ago. She was often miserable, whiny and scowling as a child, and had difficulty making friends. We moved nearly every year, so it was hard for all of us, but she seemed to be traumatized every time we were uprooted. She was relentlessly grouchy, and really affected the whole family with her unpleasantness. I attempted to counteract this with humour, trying to keep things light and make everyone laugh. It sometimes worked for a while, and it was my way of deciding to stay happy even if others weren’t. We had a brother with learning disabilities and behaviour problems, and a father with depression, so it was pretty dysfunctional, and I left home at a fairly young age to get away. Fast forward a few decades, our parents are gone, my sister lives isolated with very few friends, recently retired, and lives in terror of all the neighbours and strangers who are trying to ruin her life. I learned to understand that her fears are real, so no longer contradict her beliefs, but nothing will change if she won’t take medication.

Two years ago, I was diagnosed with a squamous cell carcinoma and had a couple of months of radiation treatment and subsequent recovery time over the next year. When I got sick, I told my sister that I had my own problems now and couldn’t deal with her issues, so I asked her to stop talking about all her problems with the neighbours. She actually respected my wishes, and as awful as it was to go through that illness, it was a relief not to have to listen to her going over (and over and over) her paranoid delusions. Once I started getting better, she went right back to talking on and on about her miserable existence. I found it so stressful to hear her whole litany of “I’m so awful, everyone hates me”, I started to wonder if it had been worth surviving cancer just to sucked back into the vortex of her misery. I wanted to enjoy my life and my friends and creative pursuits, and not be overshadowed by her darkness. Is it selfish of me to want to feel happy to be alive? Is it so wrong for me to not want her problems to be my problems?

I told my sister that in order to stay healthy and avoid recurrence or metastatic disease, I need to avoid stressful situations as much as possible. I said that hearing about her tribulations with the neighbours is too upsetting for me, and asked if she would refrain from talking about them. It’s all she wants to talk about, so she seemed a bit hurt, but she also seemed to understand. We now get together once a week for a stress-free tea-time visit. She doesn’t have a television or computer, so she comes over to watch Downton Abbey together, which she has never seen, and she is a real history buff, so she quite enjoys it. It’s a positive way to spend time together, and something we both look forward to. It is a pleasant diversion, and it’s nice to see her appear normal for the while, and I keep hoping that she’ll just get better. My own desire for inner peace plus a dose of denial of the pervasiveness of of my sister’s mental illness clashes with the tragic reality of her existence.

Reading through a number of the posts here, I see that many of you have similar experiences of your family member’s problems overwhelming your life and your own chance for meaning and happiness. What can we do to protect ourselves? Am I being too harsh telling my sister I can’t listen to her any more? How do you set boundaries?

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No you are not being selfish. When I first developed what came to be diagnosed as Schizoaffective Disorder, I did something not many people do, I started talk therapy unmedicated. People swear up and down that this doesn’t work and it’s a waste of time and money, but I was able to contain talking about my symptoms and problems largely within twice weekly hour long sessions, while going to school and working a part-time job.

I’m not saying everyone can do this, but clearly your sister has demonstrated that she has the discipline to suppress talking about her symptoms for extended periods of time. So maybe if you could set her up with CBT or other supportive talk therapy, she could contain her (I feel) necessary and understandable venting about her symptoms largely to therapy sessions. I’m assuming you live in the UK or a former English colony, so you may be able to get her supportive care.

I see you’re reading Dr. Fuller Torrey’s book which is a good start, but I feel slightly dated in light of Dr. Amador’s book introducing the LEAP method. Search the forum on LEAP and you’ll find it. Speaking from experience, especially when unmedicated, people with SZ/SZA have a deep seated need to explain and voice their thoughts and feelings about symptoms that are very real to them, and become increasingly frustrated when everyone else tells them they aren’t real and to just shut up about them. Clearly your sister can control her behavior for your sake, so I think if you got some LEAP training, and she starts regular therapy sessions, life may be more enjoyable for both of you.

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I don’t think the boundary setting really needs to be any different with your sister than with anyone else. Even if you believed that she was being persecuted, you’d eventually end up feeling stressed and frustrated if that was all she ever wanted to talk about and if there was nothing you could do to stop the neighbors etc. from tormenting her.

And I think the way you are going about it is good: you are not telling her to stop because you think she is delusional, you are asking her to stop because the constant talk about her problems it is causing you a lot of stress. No guilt necessary!

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Dear Anna, so sorry that you have to deal with your sisters illness that is untreated and difficult for you. As you know it is important for us as family members to continue to make plans for and live our own lives. Unfortunately, life continues despite how much our loved ones struggle or remain ill and that not only includes the good times (which can be hard to not feel guilty about) but also the bad times that compound our coping and our ability to get joy from life. I’m glad you are recovering from your cancer and hope that you continue to be well.

I have depression which makes it harder to cope with the bad times but luckily for me medication works well and so with my son with schizophrenia who is currently struggling with a cancer diagnosis, an antidepressant is allowing me to use coping tools and be determined to have a happy life despite what it throws at me. Life is what it is with all of its glory and tragedy. I hope you have medication or other coping tools to help you on this journey.

I’m glad you are able to have some good relationship time with your sister. I find myself not being able to let go of trying to find solutions to make things better for my son and having other people to support him is the only way that this can work for him. He currently has a team that with my involvement he is engaging with more and during this time of his illness are vital to his well being. He does use medication and it makes it possible for him to engage in life in his own way which would otherwise not be possible. Perhaps you can find an outreach program of some kind that would engage with your sister so she is not so isolated and then perhaps would be able to engage her in some kind of therapy. If you contact your local mental illness support group you will meet others in your area that know of the resources available in your area to help your sister.

Yes, I believe inner peace is possible in the face of tragedy but it may require a lot of work…

Wishing you the best.

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Thanks to each one of you for your kind and thoughtful comments. My sister does have enough self control and social awareness to suppress talking inappropriately about her symptoms in many settings. She managed working full time until a year ago when she retired. Even so, she was convinced her boss hated her and her co-workers despised her, but she was very quiet and withdrawn and opened up to very few of them. Upon retirement, she was shocked that she was honoured with a celebratory tea, with generous gifts and sincere and thoughtful cards. She even commented at the time that she must have been wrong about her colleagues despising her, but later on indicated she’d reverted to thinking that they were just glad to get rid of her.

I have always thought that my sister could benefit from talk therapy, or even art therapy. I understand that psychiatrists, treating mental illness as a disease, focus their healing efforts on medicine, as would be done for any other disease., but as she couldn’t tolerate any of the medications, there’s not much else they can offer her. She sees a psychiatrist monthly for 30 minutes, that’s all.

I wonder if a skilled and perceptive therapist might be able to help her process whatever it is she’s going through. I really don’t understand how she became this way. I didn’t see it coming, although in hindsight, the signs were there all along. She would often dwell on traumatic memories from the past, like being bullied at school, and she would recount them in such detail, that she seemed to be reliving it. Instead of being an empathetic listener, I told her to stop dwelling on negative things that happened in the past, and remember the good times instead. Like that was going to work. I just thought she was a Negative Nellie, I didn’t realize she was heading toward paranoid delusions. I have Dr Amador’s book on hold at the library, so I hope that will give me more insight. I just keep wishing I could have my sister back. I’m thinking of writing a letter to her GP and/or psychiatrist to see if she can be referred for Cognitive Behavioural Therapy or any group sessions they offer.

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I have a friend who’s husband held it together until he retired and then became increasingly paranoid and delusional to the point of eventually refusing to leave the house because of his delusions.

He did not want to take medications but he was willing to see a good therapist.

It helped a lot, and he is functional again these days. So there definitely is hope!

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Thank you for this optimistic anecdote. My next step is to write to my sister’s GP and/or Psychiatrist to discuss current family concerns and the possibility of some kind of therapy or group. Every time I try to begin writing the letter, I start to feel overwhelmed and incoherent. I say too much but I don’t say enough. It’s all so exhausting.