I have the same fear as some of you. I’m the only one in the family who is still there for my son. I’m so afraid of what will happen to him when I’m no longer here. I’m in my late sixties.
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I can so relate l am 69 and the only one that my son has in the whole world. This causes me much stress. This disease is the worst that a family can go through.
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I agree, and most people have no idea about what we go through day in and day out. You can’t know unless you’ve experienced it.
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One Dr is trying to change it to neurological brain illness.
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I agree. I think it’s worse than Alzheimer’s, and I don’t understand why it hasn’t received more attention and research funding.
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That could cover a lot of bases, though- Parkinson’s, Alzheimer’s, epilepsy, and central sleep apnea, to name just a few. I like something like neural perception disorder, since, aside from actually describing the nature of the problem, it could serve as a reminder to others that the sufferer might not perceive every situation/encounter as they would expect, and that therefore some humoring/indulgence on their part might be necessary.
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I think that the media plays a big part in it. and even television moves. The way they portray schizophrenia is just terrible. I wish they would just change the name…
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The more I learn about disorders of the brain I would say almost everybody has some kind of disorder that could be diagnosed. I’m learning a lot about myself and toleration for others. Its okay for others not to see the world through my eyes. But people can be so mean and cruel not self aware of their action at all and I’m not talking about someone with sz or bi polar. Maybe personality disorder LOL.
Have a nice holidays.
We all share a similar story. We loose our children as we know them, and family as well. My daughter is here with me now for years with schizophrenia. I put my energy in caring for her, and being responsible for her well being. My son lives out of state with the grandchildren, who i cannot see because there is no one to care for my daughter. He says he does not come here since he wants to live his life and be happy. I accept that today, but as we know the road Can be lonely snd painful. I am grateful my daughter has me today.
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Your situation sounds exactly like mine. Do you have any advice on what steps to take for my son’s future after I am dead? I’m getting on in years and there is nobody who will help my son after I am gone. Thank you!
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This is a complex subject. If you do not have relatives, a special needs trust can be created, and someone can be designated for care. My son says he will care for his sister after I am gone. One day at a time. No easy answers here.
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Thank you, that will be my goal for the New Year to finally see a lawyer and set up a trust. I’m not even sure if my son could benefit from a trust since I really don’t have anything. I own a house with my husband (he’s my sons step dad) and we still owe a lot on the mortgage. As the years go by I grow more and more terrified thinking what may happen to my son. Im getting heart palpitations now actually. If only I could take him with me when I die….
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I hope you are able to “see” your grandchildren through a video interface. My youngest grandchild lives out of state, and, except for video chats, I wouldn’t see him more than once or twice a year.
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Reading your comment brought back a memory. Long story short. I was eventually employed to work with family carers, I did this for 9 years. One carer sticks vividly in my mind, she was a senior nurse at the general hospital, her son had recently been sectioned for the first time. Her comments said it all, she said : even with all of the mental health, and carer awareness training… I could never imagined how traumatic the experience was, until I had experienced it my self. And that’s it in a nutshell, and the reason I applied for the job in the first place
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Hi, I’m glad to hear your son is doing better.
May I ask how old he is now and for how long has he been diagnosed?
Best wishes
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Hi,
My son is 37 was diagnosed when he was 18.
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Thank you. It’s a long time! My heart goes out to you, may you find the strength and he some peace and stability.
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@RoseofSharon Try not to stress about the future. Your son will receive care one way or another. In the meantime, balance your needs with assisting him now. Focus on the simple things, they mean more than you know. The most important thing is family and feeling loved and nurtured. <3
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Thank you,
I deeply appreciate your kindness. I usually have faith, sometimes it falters though. Good people such as you remind me of what’s important…
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I know this is an older thread but I just feel lucky that for the most part, we’ve managed to get my brother (who is paranoid the MORE a doctor stays with him) that him changing doctors isn’t normally an issue. The only problems we’ve ever had is new “opinions” saying he should try new meds (especially pill form ones) that will make him better.
Often times they reintroduced old meds that didn’t work despite trying them for YEARS not just months. Doctors don’t actually seem to read a patient history before they start any prescriptions. At the moment, he’s finally stabilized on a long acting injectable and doing MUCH better in an out of home care situation.
I agree though, without at least one stable doctor to orchestrate the different care needs and lab results of patients it’s almost guaranteed that people miss opportunities for better care AND a better sense of relationship and consistency. (Brother notwithstanding, his paranoia makes continued doctors visits with the same person in person a hassle.)
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