Posted 4/20/2013 10:49 PM (GMT 0)
My 31 year old brother has Type 1 diabetes, diagnosed in his late teens, and also Addison's disease, diagnosed a few years later in his early 20's. He takes prednisone and florinef for his Addison's and humalog and lantis for his diabetes. For more than five years now, his blood sugar and health in general has been out of control. His biggest issue is low blood sugar. Typically it happens over night but has happened during the day as well. It drops sharply and he starts having convulsions, is incoherent and unable to communicate, agitated and sometimes violent. This has become steadily worse. about 3 years ago, on Christmas Eve, he had a low blood sugar episode that landed him in the ICU. There was swelling on his brain and white blood cells in his spinal fluid. He suffered short term memory loss and confusion that affects him to this day. It has been a spiral downward since. He lands in the ER at least once a month with episodes such as this where his blood sugar is so low it doesn't even register on a glucometre. He is now also on anti-seizure medications to try and treat epilepsy which I do not believe he has, but he doesn't allow us into his appointments with his doctors anymore as he believe we are making them believe things are worse than they are, so we don't know with his memory loss and confusion exactly what he's telling them. He also has sharp spikes in his blood sugar that he can't account for, often close to 30, and he gives himself short-acting insulin and it takes sometimes up to an hour to take affect during which time he administers more insulin and more insulin until suddenly his blood sugar plummets. He is grossly underweight and refuses to acknowledge that. He more recently has been having stomach issues similar to when he was first suffering with Addison's disease and having trouble with his meds, making me suspect that his meds are no longer working. Not to mention that there was evidence in his ACTH (ATCH?) blood test that his addison's meds weren't working though I don't know what the status of that is now for as i said he doesn't allow us in his appts anymore. A month ago he had a bad episode and eventually agreed to go to hospital (he fights to the bitter end on that) and while there he had delirium, thinking the doctors were going to kill him, that if he went to sleep he would die, was hearing voices. This passed but he has been a bit, at least in my opinion, off since and his stomach continues to bother him. He fights against any help, fights against going to hospital, refuses to admit that he is dangerously ill, drinks (not excessively) even though he knows it always lowers his blood sugar which is already a problem without the alcohol, he stays up all night and sleeps until noon or later. He isn't coping well and neither am I. We lived together at my mom's and then my dad's after his stay in the ICU. He resented any help i tried to give in getting him to wake up, test his sugar, eat right, etc. I found him twice at my dad's having convulsions and had to call 911. I couldn't do it anymore and though I could ill afford it I moved out to live on my own. I panic when i receive a text from him as he almost only ever talks about his symptoms even though I've repeatedly asked him not to, not to mention that when he fell into delirium he was texting me insanities from the hospital. I panic when I receive a call from him or anyone in my family as its normally bad news. I have my phone set to completely silent with zero notifications of texts or calls so that I can delay finding anything out as long as possible. I avoid responding to his texts much of the time or ignore calls from my family. (Even just last night he texted me and I ignored it and it turned out he was feeling like he was in "a waking dream"). I am trying to escape and run from all this fear and the uncomfortable emotions and I know that's not going to benefit me, as I'm going to encounter things like this throughout my whole life and need to learn to cope in a healthy way. I don't want to regret, if the worst does happen, destroying any relationship I have with my brother because I am afraid. But I don't know what else to do. I can't stand being around him when he and his health are so unpredictable and I can't stand being around my parents who are aging before my eyes because of all this. My only other sibling, my sister, has fled the province because she can't handle it either. I receive CBT (cognitive behavioural therapy) but there's really no way to have exposure therapy to this type of thing or to put a positive spin on any of this. I'm at a loss. If anyone knows of any support websites for this type of thing or support groups (i live in canada) or just any advice on how to better cope with this (keeping in mind, with all due respect 'you just have to be strong for you brother/family or you will regret it' or something of the like is not what I'm looking for) I would be grateful. Thanks.