My son is 36, I’ve been caring for him since birth. So many years have passed without any one caring or lending a helping hand. On the contrary, my blood relatives have never called to ask how he is, they just have decided we are “ unclean”. My son has been med compliant for the past 16 years. He’s an extraordinary person and it baffles me me the world is against him. My neighbors started rumors about him, he looks out the window for something to do, and they assumed he was staring at their daughters. Those jerks actually sold their house! What also hurts me so deeply is my sisters are the types to get involved in all the hot political issues. They march for different causes, and volunteer, and have so much love and dedication for all of these strangers. If my poor son was diagnosed with cancer they’d be beating down the door to help. The only thing that helps me is I am Catholic and Jesus’s Mom had to go through so much horror and she never lost her faith. Does anyone else feel this way? Angry that their child is basically the lepar of the modern world???
I do feel sad and angry sometimes that I am basically my daughter’s only friend and companion. None of our old friends call her to ask her out for shopping, restaurants, etc. Even her brothers have all but ignored her for years now. She is no longer acting out in public, it’s been years now since the psychotic episodes, but still I think people are afraid of being alone with her. I’m glad she has me. And I’m glad I have her.
It makes me angry that our family members’ lives are discounted because of their brain disorders.
Somewhere out there years ago was a quote (sorry did not find it) that said the World Health Organization had declared the seriously mentally ill people to be the most disenfranchised people in the world.
The first time I read it, we were early into this journey, I was shocked to think my son had joined the ranks of the most disenfranchised people in the world.
My efforts are to minimize that reality the best I can for him. I can only do so much, but I try to make sure he is treated respectfully on my watch. I work to keep his benefits in place. Each time I have to respond to pharmacy billing errors on his meds or argue his tiny income with the state, I wonder how the folks do it who don’t have someone handling their details. My guess is they just lose their benefits and end up on the streets. I have been told more than once by pharmacy techs - “if the med is so important he can just pay for it”. NO! Between Medicare and Medicaid the cost should be -0-. I often wonder how many of our elderly are paying for meds rather than forcing the pharmacy to process their “extra help”.
I have relatives that are into hot political issues. How nice for them that they can get all worked up about stuff on their phones while walking by the homeless on the streets and pretending they don’t exist.
Okay, rant over
Thank you for responding to the topic. I’ve been a trooper and have fought and fought for my son and I guess I’m just losing steam.
I can’t change the world, just have to accept it…
I do like that one theme… I do this, not to change the world - but to show the world it will not change me.
I do plan to get back to changing the world. I have that plan penciled in on the list.
Life can be sad and heartbreaking, focus on the good, how well your son is doing, reach out to people that are the same “ like mind “ as yours.
So true. I’ve become jaded toward
people, my son is so sweet and gentle.
But he may talk about things that confuse people so he has been banned from five stores/restaurants.,I’m divorced so left with the full responsibility. And my ex never visits him. Even when I was married and my son was struggling no one offered to help. Didn’t offer to come stay with him so I could have a few moments to myself. I’d get dumb invitations from “friends” for lunch, dinner saying “just you. Not your son.” He liked going to lunch and
he didn’t feel safe staying home alone nor was it possible. No one EVER drops off a casserole to give me a break from cooking. It’s like we are lepers even now that he’s doing so well. I’m so discouraged and disappointed in people. Especially since I’ve always been the one to help others. I wish we could all get together and live nearby each other so we could be a support to each other because there’s such a lack of services that we need in this country. I do this 24/7 as most of you do.
Well, I can only dream….
@RoseofSharon, I hear you! It’s sad how people with MI are marginalized. My son’s plagued by this devastating illness and we are doing everything in our power to help him, even if not to heal him. Neighbours stare at us and hurriedly look away when we see them. My boy is smart, can speak eloquently about topics that interest him and sometimes goes off into his imaginary world. He laughs and at times talks to the voices aggressively. He’s on his sixth AP. The latest one is zydis which seemed to help a bit and then it stopped. The last few days have been awful. He is delusional and thinks we are going to poison him. He is afraid of his younger sister and stays locked in his room!
We had a huge circle of friends a few years ago and now no invitations to dinner or picnics. Even relatives have stopped calling and when they do, they don’t know what to say. It IS sad!
Like someone mentioned if my son had cancer, they will flock to my door. Well I now know who my friends are!
Love to all caregivers in this forum! Stay strong and healthy to take care of your loved ones. I’m so happy I found this forum!
My son was prescribed Risperdal and it has helped him immensely. He takes 1mg in the AM then 3 mg in the evening. Maybe you could talk to his doctor about this? They say it takes awhile to find the right meds, hang in there and thank you for replying!!
I guess we don’t need the people who were once in our lives anymore. They fear what they can’t understand. I am just going to try to count my blessings and not my crosses. It’s so hard sometimes, but some days are definitely better than others!!! Thank you!!!
This is hard. I feel for you and your son. People are ignorant and compassion seems to be in short supply these days… For some people is better to help hypothetically a person through a political statement than to give a hand to their neighbor. Try to join a support group, or form one in your community. You would be surprised how many people are in you situation, and eager to connect.
Thank you! I’m also managing my elderly Mom’s care so I haven’t much time. But it’s been so helpful hearing from everyone here. You and all those who responded have given me the strength I desperately needed!!
My son was prescribed Risperadal one mg in the morning 3 mg at night. It’s helped him very much. Maybe you could discuss this medication with his doctor? Thank you for your input, and you sound like a fabulous parent. Soon after my son was diagnosed and released from the hospital he had many issues, but as the years have worn on he is much better. Perhaps in time your son will improve as well.
I can so relate. I only have one sister and she just thinks my son’s crazy and dangerous. She has a big problem with him going to my mom’s. This is so far from the truth. He’s been on medication injection once every three months. He is such a kind hearted person. Even off medication he was not violent.
People just associate schizophrenia with violence. The media plays a big role in this. This is such a sad reality. When people hear the word schizophrenia they are just afraid and want to stay away.
Thank you everyone on this forum you all have helped me with support and advice, when we had to put my son in the hospital.
My husband passed away this year. I’m the only person and friend my son has. The worry is what will happen to him when I’m not here anymore.
My heart goes out to everyone.
I agree! They changed manic depressive to bi-polar. The word schizophrenia is so horrid! After my son was first diagnosed, my mother’s friend described her dog as a schizo. I can’t tell you how much that hurt. If anyone who is reading this has the ability to write, could you please write a story detailing the hardships our children face? It seems every one is considered inclusive, that’s a wonderful thing, but why is it acceptable to deny the mentally ill these rights as well???
It really upsets me when in movies and books when they refer to people as crazy schizo. How must our loved ones must feel to hear this. This is not right.
I think that things may be changing, so take heart. “Retarded” is now widely recognized as offensive, and “schizo” may soon be, as well. I even saw “crazy” on a list of questionable words, but that one may be difficult to avoid. I used the phrase “drives me crazy” recently, when just chatting with my relative who has SZA, regretting it immediately, but I don’t know whether he took offense at it.
Wondering what the alternative to “schizophrenia” or “schizophrenic” would be.
I have read that “Integration Disorder” could be a less stigmatizing word.
@RoseofSharon, it’s good to know your son is doing well on Risperidone. Is he studying or working? Does he experience any cognitive side effects from it? My son is also taking risperidone besides Zydis 10 mg. That’s two APs! And sadly, both are not helping him much.
We have an appointment with the pdoc on Friday and I’m wondering what next??
Best wishes and good luck to all here!
My spouse and I are empty nesters, and I didn’t really care about going out all that much, even before Covid, but who doesn’t get tired of all of the planning, shopping, and cooking that’s required for home-cooked meals? Anyhow, after trying some of the meal kits that you still have to prepare yourself, we started ordering prepared meals from a company called Freshly. They aren’t as expensive as other companies’ prepared meals, and they aren’t frozen. They’re tastier than the tv-dinner-type offerings from the supermarket, and they’re much better from a nutritional standpoint. Just a thought.