oldgraymare
10-03-10, 19:02
So my brother is a Type 1 Diabetic and also has Addison's disease. I've seen him be very sick with both illnesses. In recent years, he has been prone to sharp drops in blood sugar, resulting in minor seizures, total confusion, drop in blood pressure, and other nice things. His last episode happened over Christmas last year and landed him in the ICU with brain damage from what they thought might be an infection as they found a few white blood cells in his spinal fluid and a spot on his brain (bleeding or swelling or something) but they found no source of an infection so they suspect it was all down to the severe low blood sugar and the fact that he was taking in oxygen but wasn't breathing it out or something like that and so may have accumulated too much carbon dioxide. Plus my mother found him hanging sort of upside down off the edge of his bed, so all the blood was up there and yeah...
Anyway point being, he was very sick his last day in hospital with the D and V words which was great fun. But fortunately when we brought him home he improved quite well physically, except he is stuck with short term memory loss.
Now this is extremely stressful for myself and my parents. One of us is generally always here with him, making sure he eats at a proper time, takes his meds at the proper dosage when he needs them, makes his appointments and just generally making sure he doesn't do anything that could jeopardize his health. However, he is hell bent on making this extremely difficult for all of us. He is 28 years old and lives with our mother. I am primarily the one here with him and EVERYTHING is a battle with him. I try to get him up for breakfast, which he should be able to do on his own but doesn't, and I have to actually get physical with him, stealing his blankets, hitting him just to get him up. We've even bruised each other. We do this for him, as we've explained to him, because before this last hospital visit he would stay up all night and then sleep all day, or get up and be late for work every single time and be exhausted and his meals were all over the clock, so on and so forth. But no, he goes on about his bioneural rhythms or some crap which he claims he's had since he was young which is a load of bunk, claiming he simply can't sleep at night. His doctors have told him it is very important to get on a proper schedule of sleeping and eating, especially being a diabetic. But he just doesn't care. Same when we tell him he should go to bed, again when no one should have to tell him. He employs none of the techniques or exercises the occupational therapists and nurses have suggested to him in terms of helping his memory or at least working around the memory lapse. He's supposed to write in a journal every day after each meal, and then try to remember what he wrote at the following meal but he doesn't. He's supposed to set alarms to indicate when he is supposed to eat which he doesn't, and even if he did I know he would simply ignore them. He is supposed to record his blood glucose readings every time he checks them, generally with meals, and what dosage of insulin he's given himself with every meal and check off when he's taken his steroids for Addison's which would help in terms of knowing what meds he's taken. He does none of this. He keeps track of none of his appointments, whines and complains every time he has to go to one, and just smiles and nods throughout his appointments, never bringing up any concerns he might have or getting valuable information, simply leaves that up to my mother.
He goes on and on about how he feels like we are treating him like a baby, when he does absolutely NOTHING to take care of himself. He doesn't seem to realize just how cushy he has it. He has a roof over his head, meals, clothes on his back, my mother pays for all his medications and needles and test strips and all that, he gets driven to all his appointments whereas most people have to and DO deal with all of this completely on their own. I understand how hard it must be for him to deal with all of this, that he must be somewhat depressed and frustrated at having to deal with it everyday, and its even hard to know whether its just him or if his blood sugar is high or low, or if he's simply forgotten how hes tortured us only an hour ago with the saaaame arguments, things like that. But we are trying so hard to make this as easy as possible for him and he does NOTHING to cooperate, and he appreciates none of it. Everything we ask of him he has to dig his heels in and do the opposite. Not to mention the fact that if he actually took charge of things he would probably feel more in control and less overwhelmed by everything. And many of the occasions where he had severe issues with blood sugar which also resulted in hospitalization, they were pretty much his fault. He knows if he drinks, his sugars will drop but he would still do it. He was at work one time and could feel his blood sugar dropping but said nothing to anyone until he was passed out on the ground apparently not breathing or without a pulse or something, and had cpr done on him. And who the hell knows what happened over Christmas...but checking his glucometre, it didn't appear that he had checked his sugar levels at all that day. He would also buy bags of candy and munch on that throughout the day which is obviously a big no no for a diabetic and can cause lows as well as highs.
My parents aren't young. My dad also has Addison's disease, and he and my mother are both stressed to the maximum. He and I are both going back and forth between his place and my mom's place, sleeping on her extremely uncomfortable couches just to be here for my brother while she's at work - I'm here in the mornings and my dad comes in the afternoon after his work so that I am not alone with my brother all day. They also had to deal with my freak out about a year ago where, after some stomach issues, for six months straight I was in a state of literally perpetual, 24/7 panic, believing that I was going to die. Fortunately I've pulled back from that somewhat, but even so they worry about me as well. I don't know how much more stress their bodies can take and I am extremely worried about them. My mother seems to be getting more and more depressed and I can hardly blame her, I really hate to see it and shes somewhat over weight and is predisposed to heart conditions and just...i dont know... My dad just seems exhausted all the time. He had some stomach upset a couple of weeks ago, some minor D word, and even before that but even more so now I worry every minute he is going to fall ill because if he gets a stomach virus of any sort he has to be hospitalized promptly because he cant keep his meds in his system and so his body crashes without the proper electrolytes. Its ridiculous but every time he or my brother goes into the washroom I'm always afraid I'm going to hear them vomiting, or any time they are tired looking or napping in the day, I worry they are seriously ill. My brother had some somewhat troubling blood test results on his last visit to his endocrinologist, something to do with his Addison's, some level in his blood is way high which his steroids are supposed to help, but apparently aren't so who the hell knows whats going on there? I get frustrated because my brother clearly needs a good kick in the pants but where can we send him for it? We can't simply leave him to die just to teach him a lesson, though it seems like my mother is almost ready to do just that heh. I even worry about whats going to happen to my brother when my parents are gone, because he just has no ability to take care of himself and the rate my life is going I'm certainly not capable of taking care of him.
So all that, plus the daily grind of life, plus my own health anxieties centered around my digestive tract (am a huge emetophobic understandably. I apparently have IBS, reflux, all sorts of things that leave me nauseous and full feeling and uncomfortable all day, plus I think I have derealization, my muscles, especially in my back and shoulders and neck are always sore and in knots, and I have a really heavy fatigue and feel weak so on and so forth, typical health anxiety issues), PLUS my performance suffering at work as a result of all this drama, it just all feels like too much.
So I'm just looking for a way to keep my head above the water here. Any advice on how reconcile these issues in my head? or if not reconcile then at least put them to rest? Deep breathing and muscle relaxation and things like that would be so much easier if i could stop the constant rush of what ifs and dwelling on all the negative but i dont know how to do it effectively. it would also be so much easier if I wasn't feeling so sick myself, any advice on dealing with that? (Just FYI, i have had a great variety of tests done on my stomach, blood, urine, even heart without anything serious coming up, i have tried anxiety meds and anti depressants without luck, and i do take meds for my stomach and intestines, also without much luck. I am seeking out therapy but you really have to go through hoops to get it if you want the government to pay, no health insurance sadly.) So yeah any tips, tricks or words of wisdom would be extremely helpful.
Anyway point being, he was very sick his last day in hospital with the D and V words which was great fun. But fortunately when we brought him home he improved quite well physically, except he is stuck with short term memory loss.
Now this is extremely stressful for myself and my parents. One of us is generally always here with him, making sure he eats at a proper time, takes his meds at the proper dosage when he needs them, makes his appointments and just generally making sure he doesn't do anything that could jeopardize his health. However, he is hell bent on making this extremely difficult for all of us. He is 28 years old and lives with our mother. I am primarily the one here with him and EVERYTHING is a battle with him. I try to get him up for breakfast, which he should be able to do on his own but doesn't, and I have to actually get physical with him, stealing his blankets, hitting him just to get him up. We've even bruised each other. We do this for him, as we've explained to him, because before this last hospital visit he would stay up all night and then sleep all day, or get up and be late for work every single time and be exhausted and his meals were all over the clock, so on and so forth. But no, he goes on about his bioneural rhythms or some crap which he claims he's had since he was young which is a load of bunk, claiming he simply can't sleep at night. His doctors have told him it is very important to get on a proper schedule of sleeping and eating, especially being a diabetic. But he just doesn't care. Same when we tell him he should go to bed, again when no one should have to tell him. He employs none of the techniques or exercises the occupational therapists and nurses have suggested to him in terms of helping his memory or at least working around the memory lapse. He's supposed to write in a journal every day after each meal, and then try to remember what he wrote at the following meal but he doesn't. He's supposed to set alarms to indicate when he is supposed to eat which he doesn't, and even if he did I know he would simply ignore them. He is supposed to record his blood glucose readings every time he checks them, generally with meals, and what dosage of insulin he's given himself with every meal and check off when he's taken his steroids for Addison's which would help in terms of knowing what meds he's taken. He does none of this. He keeps track of none of his appointments, whines and complains every time he has to go to one, and just smiles and nods throughout his appointments, never bringing up any concerns he might have or getting valuable information, simply leaves that up to my mother.
He goes on and on about how he feels like we are treating him like a baby, when he does absolutely NOTHING to take care of himself. He doesn't seem to realize just how cushy he has it. He has a roof over his head, meals, clothes on his back, my mother pays for all his medications and needles and test strips and all that, he gets driven to all his appointments whereas most people have to and DO deal with all of this completely on their own. I understand how hard it must be for him to deal with all of this, that he must be somewhat depressed and frustrated at having to deal with it everyday, and its even hard to know whether its just him or if his blood sugar is high or low, or if he's simply forgotten how hes tortured us only an hour ago with the saaaame arguments, things like that. But we are trying so hard to make this as easy as possible for him and he does NOTHING to cooperate, and he appreciates none of it. Everything we ask of him he has to dig his heels in and do the opposite. Not to mention the fact that if he actually took charge of things he would probably feel more in control and less overwhelmed by everything. And many of the occasions where he had severe issues with blood sugar which also resulted in hospitalization, they were pretty much his fault. He knows if he drinks, his sugars will drop but he would still do it. He was at work one time and could feel his blood sugar dropping but said nothing to anyone until he was passed out on the ground apparently not breathing or without a pulse or something, and had cpr done on him. And who the hell knows what happened over Christmas...but checking his glucometre, it didn't appear that he had checked his sugar levels at all that day. He would also buy bags of candy and munch on that throughout the day which is obviously a big no no for a diabetic and can cause lows as well as highs.
My parents aren't young. My dad also has Addison's disease, and he and my mother are both stressed to the maximum. He and I are both going back and forth between his place and my mom's place, sleeping on her extremely uncomfortable couches just to be here for my brother while she's at work - I'm here in the mornings and my dad comes in the afternoon after his work so that I am not alone with my brother all day. They also had to deal with my freak out about a year ago where, after some stomach issues, for six months straight I was in a state of literally perpetual, 24/7 panic, believing that I was going to die. Fortunately I've pulled back from that somewhat, but even so they worry about me as well. I don't know how much more stress their bodies can take and I am extremely worried about them. My mother seems to be getting more and more depressed and I can hardly blame her, I really hate to see it and shes somewhat over weight and is predisposed to heart conditions and just...i dont know... My dad just seems exhausted all the time. He had some stomach upset a couple of weeks ago, some minor D word, and even before that but even more so now I worry every minute he is going to fall ill because if he gets a stomach virus of any sort he has to be hospitalized promptly because he cant keep his meds in his system and so his body crashes without the proper electrolytes. Its ridiculous but every time he or my brother goes into the washroom I'm always afraid I'm going to hear them vomiting, or any time they are tired looking or napping in the day, I worry they are seriously ill. My brother had some somewhat troubling blood test results on his last visit to his endocrinologist, something to do with his Addison's, some level in his blood is way high which his steroids are supposed to help, but apparently aren't so who the hell knows whats going on there? I get frustrated because my brother clearly needs a good kick in the pants but where can we send him for it? We can't simply leave him to die just to teach him a lesson, though it seems like my mother is almost ready to do just that heh. I even worry about whats going to happen to my brother when my parents are gone, because he just has no ability to take care of himself and the rate my life is going I'm certainly not capable of taking care of him.
So all that, plus the daily grind of life, plus my own health anxieties centered around my digestive tract (am a huge emetophobic understandably. I apparently have IBS, reflux, all sorts of things that leave me nauseous and full feeling and uncomfortable all day, plus I think I have derealization, my muscles, especially in my back and shoulders and neck are always sore and in knots, and I have a really heavy fatigue and feel weak so on and so forth, typical health anxiety issues), PLUS my performance suffering at work as a result of all this drama, it just all feels like too much.
So I'm just looking for a way to keep my head above the water here. Any advice on how reconcile these issues in my head? or if not reconcile then at least put them to rest? Deep breathing and muscle relaxation and things like that would be so much easier if i could stop the constant rush of what ifs and dwelling on all the negative but i dont know how to do it effectively. it would also be so much easier if I wasn't feeling so sick myself, any advice on dealing with that? (Just FYI, i have had a great variety of tests done on my stomach, blood, urine, even heart without anything serious coming up, i have tried anxiety meds and anti depressants without luck, and i do take meds for my stomach and intestines, also without much luck. I am seeking out therapy but you really have to go through hoops to get it if you want the government to pay, no health insurance sadly.) So yeah any tips, tricks or words of wisdom would be extremely helpful.