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Parent Emeritus
I give up. It hurts too much to hope.
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<blockquote data-quote="CrazyinVA" data-source="post: 662233" data-attributes="member: 1157"><p>I’m sorry, Copa. This is really, really tough, I know. I wanted to give you my perspective as the parent of two chronically ill Difficult Children – oldest has Crohn’s disease, youngest has epilepsy. Both have been noncompliant with medications in the past. With youngest, the seizures scared her enough that she didn’t stay noncompliant for long, thankfully. It was a tough go or a while though. But, my oldest fought me as a child about her medications. This cost her a colon, and several feet of small intestine. I couldn’t “make” her take her medications, even as a teenager. I couldn’t force them down her throat. It didn’t even matter to her when I took things away.. she just refused. I finally kicked her out at 19, for becoming physically violent. Not long after that, during aflare, she was discharging herself from the hospital AMA because they wouldn’t give her enough pain medications, in her opinion. I refused to come get her, and asked for a psychiatric evaluation, maybe a commitment - a doctor told me it didn’t meet the “danger to self” test. Didn't matter that it was a sort of slow suicide.. he said something to the effect of, “she has a right to make decisions for her own health.. even if they’re stupid ones.” Her own surgeon once said to her, “stop wasting my time, I have patients that WANT to get well.” That was right before she lost her colon – because it was too late. He was frustrated that she hadn't even taken the medications that could have saved it.</p><p></p><p>Even after that all that, she spent years as an adult trying to pretend her disease didn’t exist. She didn’t see a GI doctor, or take a single medication for almost 10 years – just went to the ER when a flare came on, and got admitted for “pain control.” I’d send her info on free clinics, on programs for the uninsured, hoping she’d get regular care… she never did. She just got lucky for several years. Last year, all that ignoring her disease cost her another foot of small intestine - and another job. She’s finally seeing a doctor, and on medications. She’s in a program for the uninsured. For now, she’s taking care of herself – but I know her. As soon as she’s feeling better, there’s a good chance she’ll stop her medications, and play roulette with her body again. </p><p></p><p>This disease can kill her if she doesn’t take care of herself. I worry about what will happen when she gets too ill to be on her own - her mental illness complicates it, because I just don't think I could ever let her live with me, regardless of how sick she is. But I can’t do a single thing about her choices. Painful as it is to watch her ignore her health, it’s her decision. She's an adult. And she's brilliant - gifted, even. Just very ill - physically and mentally. </p><p></p><p>She could probably qualify for disability, but refuses to apply. she'll work, get sick, lose her job, find someone to help her out, work again, get sick again, lose her job again, yada yada. I can't convince her to apply, and I won't do it for her. Right now, she's employed and has a place to live - best I can hope for.</p><p></p><p>I don't know if sharing all that helps at all, and I hope it's not too much of a hijacking of your thread. But I just wanted you to know I get it, having a child who's both mentally ill and physically ill. And I still had to detach, step back, and let her hurt herself. It is a horrible thing to type that out.. but it is what it is. It took me years to be at peace with that, and a fantastic therapist to help me through it. But I am at peace with it now. Not always pain-free about it, but at peace.</p><p></p><p>Big hugs to you. Every journey is different, and you have to decide what will work for you and your son -- what you can live with. Hang in there.</p></blockquote><p></p>
[QUOTE="CrazyinVA, post: 662233, member: 1157"] I’m sorry, Copa. This is really, really tough, I know. I wanted to give you my perspective as the parent of two chronically ill Difficult Children – oldest has Crohn’s disease, youngest has epilepsy. Both have been noncompliant with medications in the past. With youngest, the seizures scared her enough that she didn’t stay noncompliant for long, thankfully. It was a tough go or a while though. But, my oldest fought me as a child about her medications. This cost her a colon, and several feet of small intestine. I couldn’t “make” her take her medications, even as a teenager. I couldn’t force them down her throat. It didn’t even matter to her when I took things away.. she just refused. I finally kicked her out at 19, for becoming physically violent. Not long after that, during aflare, she was discharging herself from the hospital AMA because they wouldn’t give her enough pain medications, in her opinion. I refused to come get her, and asked for a psychiatric evaluation, maybe a commitment - a doctor told me it didn’t meet the “danger to self” test. Didn't matter that it was a sort of slow suicide.. he said something to the effect of, “she has a right to make decisions for her own health.. even if they’re stupid ones.” Her own surgeon once said to her, “stop wasting my time, I have patients that WANT to get well.” That was right before she lost her colon – because it was too late. He was frustrated that she hadn't even taken the medications that could have saved it. Even after that all that, she spent years as an adult trying to pretend her disease didn’t exist. She didn’t see a GI doctor, or take a single medication for almost 10 years – just went to the ER when a flare came on, and got admitted for “pain control.” I’d send her info on free clinics, on programs for the uninsured, hoping she’d get regular care… she never did. She just got lucky for several years. Last year, all that ignoring her disease cost her another foot of small intestine - and another job. She’s finally seeing a doctor, and on medications. She’s in a program for the uninsured. For now, she’s taking care of herself – but I know her. As soon as she’s feeling better, there’s a good chance she’ll stop her medications, and play roulette with her body again. This disease can kill her if she doesn’t take care of herself. I worry about what will happen when she gets too ill to be on her own - her mental illness complicates it, because I just don't think I could ever let her live with me, regardless of how sick she is. But I can’t do a single thing about her choices. Painful as it is to watch her ignore her health, it’s her decision. She's an adult. And she's brilliant - gifted, even. Just very ill - physically and mentally. She could probably qualify for disability, but refuses to apply. she'll work, get sick, lose her job, find someone to help her out, work again, get sick again, lose her job again, yada yada. I can't convince her to apply, and I won't do it for her. Right now, she's employed and has a place to live - best I can hope for. I don't know if sharing all that helps at all, and I hope it's not too much of a hijacking of your thread. But I just wanted you to know I get it, having a child who's both mentally ill and physically ill. And I still had to detach, step back, and let her hurt herself. It is a horrible thing to type that out.. but it is what it is. It took me years to be at peace with that, and a fantastic therapist to help me through it. But I am at peace with it now. Not always pain-free about it, but at peace. Big hugs to you. Every journey is different, and you have to decide what will work for you and your son -- what you can live with. Hang in there. [/QUOTE]
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