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?