THIS is what people can’t understand. People expected ME to compensate for Billy’s shortcomings. It was incumbent on ME to make sure Billy bathed and wore clean clothes.
My most dreaded scenarios were when Billy’s presence was mandatory, like my mother’s and my father’s funeral. I had to get the clothes, take him to the tailor (how awful this experience was), make sure he bathes properly etc (mission impossible), get him dressed, make sure he takes his meds, etc. Sometimes I wanted to cut to the chase and just use a whip and chair on him. He was a hideous animal.
THEN if Billy wasn’t all cleaned up and polite (which was never) it was 100% my fault because he “doesn’t know any better.” So I’m mourning my father at his funeral and my remaining relatives are heaping scorn on me because after all these years I still haven’t “straightened out” Billy.
Hi Eddie, It is horrible to deal with this horrific illness. . These know it all arrogant people have no idea! People tell me all kinds of things to do with my son, they just don t get that they are too delusional and psychotic to listen to anything. My son is also very mean, which makes it even harder. I am fearful of my son and could never even make him dress in anything, he auctually has been wearing the same clothes for a month. It takes over your life and it make you feel crazy. I hate it all and wish I could get away from it. It is traumatizing and exhausting, and that is only the beginning of what this illness does to the families.
Indeed, people just don’t get it. In fact when it first happened I didn’t get it for a long time. I just couldn’t understand how someone couldn’t control their mind and couldn’t perceive reality.
I am traumatized and exhausted. And Billy was very mean. He was cruel to my mother, which really bothered me. She died in her 60s and I think the stress really contributed to that. And he was a total dick to me 100% of the time. All his problems were my fault, and I was always plotting against him. He never trusted me but he trusted awful people that wished him no good.
I totally get it, they can suck you dry and when they have a mean personality stubborn personality to begin with there is no reasoning. I can understand totally why you hate him. They only care about themselves.
I think that, looking back, I didn’t realize soon enough or often enough when to just leave my daughter to herself. I kept trying to force things on her that she didn’t want: food, demands to clean up, etc. I wore myself out constantly doing things for her that she didn’t even appreciate. Hindsight is often a good teacher. I see now that I barely ever took any time for myself. I was lucky that she liked to stay in her own room and scream at her voices, she didn’t come out and cause public scenes very often. It drove me mad to listen to her 24/7 but trying to stop her or fix her or even get her to talk to me instead of her voices was so exhausting. Those memories make me want to ask you Irene, are you taking care of yourself? and Eddie, have you found some new interests? I hope you both find some emotional “ups” today.
I’m taking care of myself. I walk every day. I lost over 60 lbs. My blood pressure and blood sugar are now finally under control for the first time in 20 years. I’ve been seeing the eye doctor and have had several laser treatments, which restored my eyesight that I lost to diabetic retinopathy. I spend quality time with my cat every day.
I never even thought about taking care of myself before. I never even thought that my life was not normal because it was a never ending crisis because of Billy. I never thought about much of anything but Billy for at least 20 years. I still cringe and skip a heartbeat when the phone rings.
And I often think it was all for naught. I can’t see where he ever cared about anything. I never got any appreciation; on the contrary, I was his scapegoat.
Do those wretches sleeping in the alley on cardboard with a load of feces in their pants care about their dreadful state? It seems to me the only thing they care about is their next cigarette. That was Billy.
Hi old lady blue, Es hindsight is a good teacher. I do take time for myself but the constant nagging in my head about my son’s awful condition and that he may be homeless soon because he refuses to see a doctor, makes me feel sad and anxious a lot. Also I am scared to be around him when he is in this psycotic state. But reading stories like yours gives me hope. Thanks for all your posts, they are very insightful.
I don’t actually see my loved one in person, but from what he has told me in phone calls and audio messages he is obese, increasingly toothless, suffers from venous problems such that his lesions open and weep when he stands for more than a few minutes, is wracked with spine and joint issues as well as incontinence.
He’s lucky to have resources, a place to live and someone (paid) to provide basic care and food. I used to be outraged that his family abandoned him but this forum helped me understand why. I am horrified as to what he became but I refuse to abandon him. Don’t ask me why, even I don’t know.
Wouldn’t wish this most horrific of disorders on anyone. And yet, from time to time, there is a glimmer of hope. I pray for the young, that they may experience something close to a cure in their lifetime.
Probably very true, that next cigarette and that next drink of alcohol is what they think about most. My husband, who used to be part owner of a bicycle shop, frequents several homeless pantries at breakfast time to help them fix their bicycles for free. He carries two packs of cigarettes: one for himself, (no filters), and one of another brand (with filters) to hand out to the clients of the food pantry. He’s hired a few to do yard work at our home for a few hours and they always take off for the store with their $15 or $25 cash to buy beer and cigarettes and come back to my house to sit and smoke and drink with my husband. Some have been homeless for 5 or 10 years getting a Social Security or Disability check monthly, but living in the bushes in the back of Bank of America or Home Depot. They really don’t wish for anything else. I’ve asked my husband to stop giving them jobs in our yard because they don’t change. It’s a hard way of life, but the cigarettes and beer “help” them (they think). I don’t smoke or drink myself though, so can’t really understand.
I truly understand Irene about the swirling thoughts in your head. Try to remember that you aren’t the cause of your son’s condition: past, present or future.The best you can hope for is that your son allows this terrible illness to be managed, as it is an incurable disease. However, most cannot support themselves, so homelessness or jail can become their future. You can only do your best. But don’t lose yourself to his care. Take care of yourself first, and him second, whenever possible.
Thank you so much for reminding me of that. In the beginning of his illness my son always came first and I gave up many things in my life to help him. Now after over a decade and he is worse off than ever, I realize we have to take care of ourselves, we only get one life too. And many times all of our helping them does not seem to make them better, at least in my son’s case.
It is good you are out of that horrible situation that was put on you due to things out of your control. Your parents probably thought they were doing what was best, but did not realize that the burden is too much for anyone. Enjoy your cat, furry friends are the best. Good you finally got a chance to put yourself first and regain your life.
Yes, always keep that in mind. They can’t help being sick, they likely were born that way, but you did nothing to make them sick.
Easy to say when you feel strong – but important to keep in mind when you feel beaten down and guilty. Those folks with “normal” kids, partners or siblings just got lucky in the crazy life lottery. They also deserve no blame or kudos.
Everyone who cares for someone with this devastating, most cruel disorder is a HERO.