NiKky
New member
- Joined
- Oct 18, 2011
- Messages
- 7
- Diagnosis
- 10/2011
- Country
- US
- State
- NY
- City
- Woodhaven
I'm not even sure if this is the right place to put this thread but I am just soo frustrated right now, I need to just vent!
Just to give you a little background: I'm 23 & my father was diagnosed with ALS last month but has had it for about or almost a year. (It was something we suspected but the doctors could never gave us a straight answer.) On another note, when I was younger, about 8 or so, my Grandmother (Mom's, Mom) passed away of breast cancer. I was kinda sheltered from that, but completely understand why.
Sooo, when my father was admitted to the hospital last month, they finally diagnosed my father with ALS. Here I am thinking "okay, we're finally going to get an answer!" 2 weeks or so went by, no talk of ALS. I call my mom from work one morning to see how my Dad was doing, she tells me everything is fine. At about 2:30, on my lunch break, I called again to check in, like I did everyday and she tells me "Okay, he's surgery went well." Surgery? I had absolutely NO idea about any surgery. It turned out that he had a feeding tube put in through his stomach. I went to see him as soon as I got out of work & let me tell you, it wasn't only heartbreaking but it was also scary seeing my Daddy, my hero, my bff, like that. He was over medicated, which the doctors did admit. So, he was nodding off, in and out, high as a kite and in a lot of pain. I'm not a cryer, but it's safe to say, my make was a mess when I left that hospital. I never felt so scared and worried and heartbroken all at the same time. I had a talk with my mom that night, I'm not a little girl, you have to stop hiding these things from me. If my father is getting surgery, no matter how minor, I should and need to know! Even if I get upset, it's okay, I'm an adult, I can handle it. She apologized & used my Grandmother's passing as an excuse for why she does that & then promised not to do it again.
The next day, I was leaving for work that morning & she said something that I might have to leave work early to come meet her to talk to the doctors. I asked why, she said she wasn't sure, they just wanted to talk to us about Dad and where to go from there. I asked what time she said "1:30 but you know doctors, it depends on them." I go to work with no extra worries than the ones I already had from the previous day. Sure enough, at 12:15, I get a call at my office and my mom needs me at the hospital "no later than 1:30." I explain things to my boss and I leave. My moms there with my Dad, he seemed a bit better than the day before but seeing the feeding tube for the first time and everything, was hard. There were nurses and doctors in and out but nothing out of the blue. My sister strolled in about 15 minutes after I got there, Mom leaves the room and some lady comes back and asked to speak to us in another room. My mom was very persistant about me going, I didn't think anything of it because I just wanted to hear what was going on. Next thing I know, I'm in this little room with a complete stranger explaining to me that my father has ALS, we have to take it one day at a time, she doesn't know much other than it's a sure diagnoses. I thought it was weird the way my mother cried, I heard no gasp. I thought it was even more strange when I was the only one who was asking questions to see how accurate this lady was. Something was just off and I knew it. The lady was nice but as she was explaining things, I asked her when they came to this determination and she said "Well, as I was telling your mother yesterday..." and my heart just sank. At that point, I stopped listening. When the lady left, I had nothing to say. My mom asked me to please say something and all I could say was "You ambushed me." I left the room crying, I walked around for a bit before I returned. The rest of my evening I had people; all these social workers, hospice workers, case workers and a million strangers in my face who wanted to talk and kept asking about how I felt. Not to be a b-word, but I didn't want to talk to anyone at that point. Later that night, when my mom and I were finally home, we had a discussion again about keeping me in the dark as far as my father's health is concerned. We both cried and everything and I thought mayber this time the promise was sincere. I didn't want to sit there and kick someone while they're down and just lose it on her. I can't do that, I don't have the heart to. Maybe in my head, I was screaming and yelling at her but on the outside, I calmly explained to her that I'm not a little girl anymore, this is my father, I have a right to know the truth and not have to hear it from a stranger. I understand that it's hard to tell your child something like that, but she had other options. For example, have my older sister tell me, just don't let a stranger who doesn't even know how to correctly pronounce my last name, tell me!
Moving onto the past week.. My father is back in the hospital because he was having trouble breathing and getting mucus up so they were gonna have to suction it out and monitor his breathing. He had a problem for a few days where he wasn't fully exhaling so he was breathing in gases which were making him really loopy and sleepy. I know the doctors have been pushing a trachotomy on him. At first I thought "no way, he doesn't need one yet!" Now I feel like, if it's going to help him, then do it but I still have my concerns. My biggest concern is when he sleeps. He cant lay down straight, he has to sleep in the upright position so he sleeps in this big recliner (at home and in the hospital). I've seen him nodd off and go sleep a thousand times & my concern is when he nodds off and his chin goes to his chest and blocks his hole, then what? He could suffocate. I need assurance that this won't even be a possibility. Otherwise, I'll never sleep, I'll be up all night to make sure he's breathing every 2 minutes. So this whole talk about the trachotomy hasn't really been brought up this week, until Saturday night at the hospital. My father said his throat & voice were bothering him so he wasn't talking much but he held my hand a lot, winked a lot and pointed to his eye, heart and then me (eye heart you) which was really cute & made my night. So my mother and I were talking and I had to pull information about the trach out of her. I made my point about when he sleeps and how if their solution is a neck brace, that's a problem because he's claustrophobic and doesn't wear the braces he's supposed to now, anyway. I explained how I'd be more comfortable with a tube or some alternative to ensure that we wont have to worry when he sleeps & that I wanted to mention it to the doctor, or at least, she should. So she was playing really ditzy which was a dead giveaway that she was with holding information. I let it go because I wasn't there to interrogate her, I was there to spend time with my Dad.
So yesterday, she tells me and my sister to have a birthday party for my nephew and she'd be there by cake time since she was going to the hospital. When I go to my sister's house, it was just us and we were talking. Through my sister, I found out that there was a meeting with the trach doctor yesterday. My sister wanted to stay out of it which I understand so I called my mom to see what was going on. She said she was waiting to see the in-house doctor to talk to him and then she'd let us know how it went. Hours passed, I didn't hear from her. We call her back and suddenly she tells me she won't make it to the baby's party because the trach doctor is stopping by at 8. I let it go for the night. My sister and I were upset because we wanted to be there to talk to the doctor but she told us to throw a 2 yr olds bday party instead (all the while the appt. with the trach doctor was already set). So whatever, we were upset about it but nothing that we were going to throw in her face or make a big deal about because she has it rough. You know, he'll take his frustrations out on her, but still tell her how much he loves her. And then if she'll take her frustrations out on me, and it's so unlike me, but lately I've been biting my tounge and taking it from her, just becaue I know it's not me. I'm the closest person to her and the only person she sees everyday to be able to vent and cry to.
So this morning as I was leaving for work and she was doing her morning routine, I was asking about the doctors and stuff. I straight out asked her if she had any idea that she was meeting or possibly meeting trach doctor and she lied to me! She said "no" at least 2-3 times. I'm standing there thinking "Really? How many times do I have to ask you to stop being shady and stop lying about this kind of stuff!" but I didn't even let the words, or anything close to that, leave my mouth. I asked if she was sure about that, she insisted yes and in my head I was just thinking "you little liar. There is no possible way Jen (my sister) had lucky guess like that."
It's just soooo frustrating to be left in the dark about important things! On one hand, I really do understand. I know she loves me and I know she doesn't want to see me hurt but on the other hand, how could you not tell me about these things? As his daughter, I have a right to know. What annoys me most is the fact that everytime she does give me some insight as to what exactly is going on and what the details are, I ususally have some very good insight and valid points. She doesn't realize that I've done my research, I understand a lot more than she thinks. It's just killing me that at 23 years old, she's still treating me like I'm 8! I feel like any day now she's going to bring me to the children's section of Barnes & Noble to help me find a book explaining what death is, just like she did when I actually was 8 years old and my Grandma was dying.
I really don't know what to do here. I feel like she's in her own little World. My Dad wants to be living in their home in Cape Cod by Christmas the latest and I feel like she's ignoring his wish, saying okay but doing nothing to make it happen, simply because she doesn't want to leave her two daughters and her grandson. I don't understand why she has to be shady and now she's lying about things. I've tried talking to her calmly, explaining myself clearly and thought I got through to her. Apparently not, though. I refuse to fight with her over it because neither of us need the extra stress right now, we need to be there for eachother. I just don't feel like with-holding information and lying is being there for someone, but whatever, we have different definitions, i guess. My sister says I have to be at the hospital and talk to the doctors myself. Wish I could but I work Monday-Friday and go to the hospital right from work. I rarely see the doctors when I'm in there because they usually come earlier or I just missed them. I just don't know what to do anymore, I feel so alone and I fear that things are going to get worse without me even knowing about it. I just wish my mom could understand that she's making this harder on me by handleing it the way she is. I know she thinks what she's doing is best, but it's not. I've told her this which is why I just don't get it. I just feel so freaking lonely, depressed and numb all at once.
Just to give you a little background: I'm 23 & my father was diagnosed with ALS last month but has had it for about or almost a year. (It was something we suspected but the doctors could never gave us a straight answer.) On another note, when I was younger, about 8 or so, my Grandmother (Mom's, Mom) passed away of breast cancer. I was kinda sheltered from that, but completely understand why.
Sooo, when my father was admitted to the hospital last month, they finally diagnosed my father with ALS. Here I am thinking "okay, we're finally going to get an answer!" 2 weeks or so went by, no talk of ALS. I call my mom from work one morning to see how my Dad was doing, she tells me everything is fine. At about 2:30, on my lunch break, I called again to check in, like I did everyday and she tells me "Okay, he's surgery went well." Surgery? I had absolutely NO idea about any surgery. It turned out that he had a feeding tube put in through his stomach. I went to see him as soon as I got out of work & let me tell you, it wasn't only heartbreaking but it was also scary seeing my Daddy, my hero, my bff, like that. He was over medicated, which the doctors did admit. So, he was nodding off, in and out, high as a kite and in a lot of pain. I'm not a cryer, but it's safe to say, my make was a mess when I left that hospital. I never felt so scared and worried and heartbroken all at the same time. I had a talk with my mom that night, I'm not a little girl, you have to stop hiding these things from me. If my father is getting surgery, no matter how minor, I should and need to know! Even if I get upset, it's okay, I'm an adult, I can handle it. She apologized & used my Grandmother's passing as an excuse for why she does that & then promised not to do it again.
The next day, I was leaving for work that morning & she said something that I might have to leave work early to come meet her to talk to the doctors. I asked why, she said she wasn't sure, they just wanted to talk to us about Dad and where to go from there. I asked what time she said "1:30 but you know doctors, it depends on them." I go to work with no extra worries than the ones I already had from the previous day. Sure enough, at 12:15, I get a call at my office and my mom needs me at the hospital "no later than 1:30." I explain things to my boss and I leave. My moms there with my Dad, he seemed a bit better than the day before but seeing the feeding tube for the first time and everything, was hard. There were nurses and doctors in and out but nothing out of the blue. My sister strolled in about 15 minutes after I got there, Mom leaves the room and some lady comes back and asked to speak to us in another room. My mom was very persistant about me going, I didn't think anything of it because I just wanted to hear what was going on. Next thing I know, I'm in this little room with a complete stranger explaining to me that my father has ALS, we have to take it one day at a time, she doesn't know much other than it's a sure diagnoses. I thought it was weird the way my mother cried, I heard no gasp. I thought it was even more strange when I was the only one who was asking questions to see how accurate this lady was. Something was just off and I knew it. The lady was nice but as she was explaining things, I asked her when they came to this determination and she said "Well, as I was telling your mother yesterday..." and my heart just sank. At that point, I stopped listening. When the lady left, I had nothing to say. My mom asked me to please say something and all I could say was "You ambushed me." I left the room crying, I walked around for a bit before I returned. The rest of my evening I had people; all these social workers, hospice workers, case workers and a million strangers in my face who wanted to talk and kept asking about how I felt. Not to be a b-word, but I didn't want to talk to anyone at that point. Later that night, when my mom and I were finally home, we had a discussion again about keeping me in the dark as far as my father's health is concerned. We both cried and everything and I thought mayber this time the promise was sincere. I didn't want to sit there and kick someone while they're down and just lose it on her. I can't do that, I don't have the heart to. Maybe in my head, I was screaming and yelling at her but on the outside, I calmly explained to her that I'm not a little girl anymore, this is my father, I have a right to know the truth and not have to hear it from a stranger. I understand that it's hard to tell your child something like that, but she had other options. For example, have my older sister tell me, just don't let a stranger who doesn't even know how to correctly pronounce my last name, tell me!
Moving onto the past week.. My father is back in the hospital because he was having trouble breathing and getting mucus up so they were gonna have to suction it out and monitor his breathing. He had a problem for a few days where he wasn't fully exhaling so he was breathing in gases which were making him really loopy and sleepy. I know the doctors have been pushing a trachotomy on him. At first I thought "no way, he doesn't need one yet!" Now I feel like, if it's going to help him, then do it but I still have my concerns. My biggest concern is when he sleeps. He cant lay down straight, he has to sleep in the upright position so he sleeps in this big recliner (at home and in the hospital). I've seen him nodd off and go sleep a thousand times & my concern is when he nodds off and his chin goes to his chest and blocks his hole, then what? He could suffocate. I need assurance that this won't even be a possibility. Otherwise, I'll never sleep, I'll be up all night to make sure he's breathing every 2 minutes. So this whole talk about the trachotomy hasn't really been brought up this week, until Saturday night at the hospital. My father said his throat & voice were bothering him so he wasn't talking much but he held my hand a lot, winked a lot and pointed to his eye, heart and then me (eye heart you) which was really cute & made my night. So my mother and I were talking and I had to pull information about the trach out of her. I made my point about when he sleeps and how if their solution is a neck brace, that's a problem because he's claustrophobic and doesn't wear the braces he's supposed to now, anyway. I explained how I'd be more comfortable with a tube or some alternative to ensure that we wont have to worry when he sleeps & that I wanted to mention it to the doctor, or at least, she should. So she was playing really ditzy which was a dead giveaway that she was with holding information. I let it go because I wasn't there to interrogate her, I was there to spend time with my Dad.
So yesterday, she tells me and my sister to have a birthday party for my nephew and she'd be there by cake time since she was going to the hospital. When I go to my sister's house, it was just us and we were talking. Through my sister, I found out that there was a meeting with the trach doctor yesterday. My sister wanted to stay out of it which I understand so I called my mom to see what was going on. She said she was waiting to see the in-house doctor to talk to him and then she'd let us know how it went. Hours passed, I didn't hear from her. We call her back and suddenly she tells me she won't make it to the baby's party because the trach doctor is stopping by at 8. I let it go for the night. My sister and I were upset because we wanted to be there to talk to the doctor but she told us to throw a 2 yr olds bday party instead (all the while the appt. with the trach doctor was already set). So whatever, we were upset about it but nothing that we were going to throw in her face or make a big deal about because she has it rough. You know, he'll take his frustrations out on her, but still tell her how much he loves her. And then if she'll take her frustrations out on me, and it's so unlike me, but lately I've been biting my tounge and taking it from her, just becaue I know it's not me. I'm the closest person to her and the only person she sees everyday to be able to vent and cry to.
So this morning as I was leaving for work and she was doing her morning routine, I was asking about the doctors and stuff. I straight out asked her if she had any idea that she was meeting or possibly meeting trach doctor and she lied to me! She said "no" at least 2-3 times. I'm standing there thinking "Really? How many times do I have to ask you to stop being shady and stop lying about this kind of stuff!" but I didn't even let the words, or anything close to that, leave my mouth. I asked if she was sure about that, she insisted yes and in my head I was just thinking "you little liar. There is no possible way Jen (my sister) had lucky guess like that."
It's just soooo frustrating to be left in the dark about important things! On one hand, I really do understand. I know she loves me and I know she doesn't want to see me hurt but on the other hand, how could you not tell me about these things? As his daughter, I have a right to know. What annoys me most is the fact that everytime she does give me some insight as to what exactly is going on and what the details are, I ususally have some very good insight and valid points. She doesn't realize that I've done my research, I understand a lot more than she thinks. It's just killing me that at 23 years old, she's still treating me like I'm 8! I feel like any day now she's going to bring me to the children's section of Barnes & Noble to help me find a book explaining what death is, just like she did when I actually was 8 years old and my Grandma was dying.
I really don't know what to do here. I feel like she's in her own little World. My Dad wants to be living in their home in Cape Cod by Christmas the latest and I feel like she's ignoring his wish, saying okay but doing nothing to make it happen, simply because she doesn't want to leave her two daughters and her grandson. I don't understand why she has to be shady and now she's lying about things. I've tried talking to her calmly, explaining myself clearly and thought I got through to her. Apparently not, though. I refuse to fight with her over it because neither of us need the extra stress right now, we need to be there for eachother. I just don't feel like with-holding information and lying is being there for someone, but whatever, we have different definitions, i guess. My sister says I have to be at the hospital and talk to the doctors myself. Wish I could but I work Monday-Friday and go to the hospital right from work. I rarely see the doctors when I'm in there because they usually come earlier or I just missed them. I just don't know what to do anymore, I feel so alone and I fear that things are going to get worse without me even knowing about it. I just wish my mom could understand that she's making this harder on me by handleing it the way she is. I know she thinks what she's doing is best, but it's not. I've told her this which is why I just don't get it. I just feel so freaking lonely, depressed and numb all at once.