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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. :(
 
I am sorry you are feeling so frustrated, I wish I had the solution to your problem. The only thing I can tell you is just to be there for your dad and maybe have a heart to heart with your mom and tell her instead of protecting you she is really just hurting you. I can understand her not wanting to worry you but eventually she will appreciate your being there to help with decisions and to comfort her. I hope things get worked out between you and your mom.

Dana
 
Nikky,
Please be forewarned that you may not like what I have to say, but in our ALS world time is of the essence so you should hear it sooner rather than later. So here goes... First, I have children your age, as well as older and younger. I was diagnosed the same month your father was. In the last month I can tell you that every one in both of our families has no doubt been on a steep learning curve with regards to dealing with this disease, the impact it will have on all of us, emotions we never knew were coming and with the ultimate truth that the patients will die from this.

You say you're 23 so you can deal with knowing the truth. Consider that your Mom may not be able to deal with it in a way that includes telling you everything right now. Maybe she wants some control of something. Maybe she's in denial. Maybe she just doesn't want to talk about every detail right now. Her husband is sick, in the hospital and wading through scary and new waters; cut her some slack.
I can say this, if either of my 20-somethings were causing my wife any grief right now, no matter the reasoning, I'd darn sure tell them that the best way they can help her - and me - is to be quietly waiting until Mom is ready. To be with her whenever needed, with no demands. Not one.

I hope you realize by now that continuing to tell her to keep an open, running dialogue is not working for you. Additionally, it is making it harder for her to deal with this disease because she now has to "play ditzy" or "lie" (your words, not mine). Is it possible to let her grieve and cope without that added stress? But for watching my own wife over the last month, I can only imagine the pressure your Mom is under. I'm fairly certain she doesn't choose to endure these procedures alone, but for reasons you don't know about she has to cope with this in her own time before that changes.

Bless you for wanting to be involved, bless you for loving your Dad and continuing to visit and check on him. And I pray you can be a strong and, if it's what she needs most, a 'backstage' support for you Mom.
 
Although I thank you for the reply Jeff, I'm not sure you got my point. I am the one there for my mom. In fact, I'm her only support system. I'm who she vents to, cries to, I'm the only one who just listens to her and is there for her. I certainly do not throw anything in her face so, I know I am not causing any "grief" during this terrible time for either of my parents. I understand everyone deals with things differently but there's no excuse why she tells my sister details and not me. Clearly, it's not a problem to talk details with her other daughter, but for me it is. THAT is what I don't understand. Why one and not the other when all we want to do is help? Not to mention, if her and my father are the ones asking for my help, then I really shouldn't be left in the dark and she shouldn't play ditzy or lie (yes, my words), because that is exactly what she does. I understand it's hard for her, as well as the rest of our family but my parents raised me, teaching me that family has family's back no matter how rough things get. I don't respect how she handles this situation when it comes to me and hopefully sometime soon, she'll realize that "an open, running dialogue" just isn't going to work to the rest of the family.
Regardless, thank you for your reply and your prayets for my mothers "backstage" support.
 
**she'll have to realize that by not having "an open, running dialogue," it's just isn't going to work for the rest of the family (My Father included).
 
Nikky I know you are having a really hard time right now, but I think Jeff was very wise in his advice. The bond between husband and wife is so strong and so very different than the bond with children especially in times of crisis. Also, the relationship that parents have with each child is very different--it doesn't mean that one child is preferred over the other child--just that each person has different strengths to offer and we turn to different people to get what we need in times of crisis. When spouses are dealing with life threatening issues involving one another it is pretty natural to close ranks and in effect just not have the strength to deal with the children. It is all a process of grieving and then trying to accept things as they are going to be. Your mother needs unconditional support right now. She needs to find her way with the thoughts of losing her life partner. You need to give her time to process things and just wrap your arms around her. Lots of good wishes to you Nikky and prayers for peace for all of you.
Laurel
 
And all I'm saying is I don't understand that, considering I am closer to both of parents than my sister is. All I do is support them and wrap my arms around them. I feel like I'm the only one who sticks up for my dad. His final wishes of where he wants to spend the rest of his life, I'm making happen without the help of anyone and when I come somewhere looking for support, I really don't appreciate feeling like someone is judging me or my situation, telling me that I need to cut my mother some slack when all I ever do is cut her slack. I thought I made myself clear that I didn't want to make this any harder on her or anyone else, I just wanted a little advice. I really don't want someone to put me down as if all I do is bother my mother about telling me what the doctors say. I merely wanted advice on how to get this information myself without having to go through third parties.. or feeling judged like I'm some crappy daughter or something who isn't the "support" my mom needs.
 
Nikky,
Your Mom vents to you, cries with you and asks you to listen because that's what she needs you to provide. If she talks details with your sister, it's because that's what she needs your sister to provide.

It doesn't have to be fair; it has to work for your Mom. And it'll probably change along the way.

I hope you didn't mistake my use of the term 'backstage' to imply some lesser role. In fact, I believe it is quite the contrary.
 
Poor Nikky... you're grieving too and it's very hard. There is nothing... I repeat NOTHING .. that is fair about ALS. There is a reason it is called a "family disease." I know you wish your mom would be more open with you. Things will continually change and move and rearrange over the next months. It will never be how you.. or your mom... or your dad... or your sister... wants it to be and you will each deal with the grief and anger in your own ways. Sometimes it will get turned on each other...try not to let that last too long. The direct answer to your question is that since your mom is alive she is your dad's next of kin and there is really no way you can get medical information except through her or your dad unless your dad has given the doctors permission in writing to speak with you. It sounds like your dad either got a late diagnosis or has fast progression.. either way, your family has had no time to catch its breath and ease into anything. Try to adopt the mantra that many of us have learned to live by: "It is what it is" Good luck to your and your family.
 
Oh another quick observation: It's quite possible that your mother doesn't want to move away from you and your sister and the doctors familiar with your father's case because she is wisely looking down the road to the need for a support system that she would be moving away from. You don't mention if they have a circle of family and friends in Cape Cod. Is the house suitable for a disabled person? Is there ALS knowledgeable medical care nearby? I understand you want to help fulfill your dad's wish, but sometimes practicality must win out for everyone's health and safety.
 
Nikky I am not judging and I'm sorry if it came across that way.
Laurel
 
Hi Nikky,

Your parents are lucky that you and your sister are there for them and ready and willing to help. Keep trying to get more involved, but do try to be more patient and understanding of your mom's behavior. You are 23 and an adult, (but still her little girl) and the best way to prove that to your mom is to keep on being strong for her and accepting of the decisions she makes. No doubt she is grieving and shell shocked right now and perhaps not thinking clearly about you or the situation.

It is frustrating, but Katie is right: it is what it is. All you can do is be there for her and him, and accept the decisions they make without anger. I think you will find that as time goes on your mom will open up to you and lean more on you and see you as the beautiful young woman that you are.
 
Your mother is trying to protect you from the reality of this nasty disease as much as she can, while leaning on you as little as she has to. There are no right or wrong ways to handle this, just hang in there and keep the love and support STRONG. Stick together no matter what. This disease is nobody's fault, but choices in care have to be made between both of your parents, no matter how they handle everything else. Love them for who they are, and enjoy the time you have with them.
 
Just a brief comment. If this post is at all representative of how the interaction between you and your mother typically goes, I can understand why your mother keeps you in the dark. This situation is about your father, his needs, and the care necessary to meet those needs. It's not about you or your need to have input into the process, or your need to be informed in advance of what treatments your father gets and when he gets them, as if your approval is required before everyone moves on to the necessary business. Like it or not, you aren't in charge of this process and, from the looks of things thus far, that's probably for the best.

If you are going to make your support for your mother -- and through her, your father -- conditional on meeting your needs and not theirs, I predict that you will have a very rough time of it. You have a lot to learn about this disease and a short time to learn it, so you would be well served to spend much more time listening than you do talking in the near future, even if the person who is teaching you does mispronounce your name. Stow your ego in the closet and learn what you need to do to make your father's life easier and better. It's not about you. It's not about your mother. It's not about her relationship with you or her relationship with your sister. It's about your father, and the sooner you refocus your attention there, the better.

Good luck to all of you.
 
NiKky, I would suggest you seek some counselling. It would be of great help to unfold your feelings and perhaps understand the situation your parents are going through.

Your mother is at her wits end and frankly, probably isn't thinking about you or your sister and how y'all might feel. She's thinking about the next step and how to stay ahead of things to keep your father alive for as long as she can, while honoring your father's wishes. She's thinking about losing the love of her life! She may not even remember which daughter she has spoken to about what (Believe me when I say that!)! That doesn't mean she doesn't think any less of your opinions, it just means she has a whole boatload to think about that is crowding her mind.

Like others have said, just be there!

And take the advice offered before me:

It's about your father, and the sooner you refocus your attention there, the better.
 
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