Jessica231369
New member
- Joined
- Feb 27, 2021
- Messages
- 9
- Reason
- Loved one DX
- Diagnosis
- 02/2021
- Country
- US
- State
- NY
- City
- Waterloo
I am 38 years old, and my father is going to be 65 in 10 days. Two weeks ago he was diagnosed with ALS and given a year. I have watched my father decline for the last 4 or 5 years, and the last 2 years have been rough to watch. No doctor could find the reason for his weight loss, and we all believed it was cancer, since he already had 2 different types of cancer before. The doctors just kept telling him it was stress, and my father became so weak; he went from being 175 lbs. to 119 lbs. in the last 4 years. Like I said though the drastic change in weight, energy, and breathing has been progressing at a rapid pace for the last year or 2.
This disease is scary, and ugly. I almost feel like cancer would of been better...at least for my father it would of been. All of my father's life he was a hard working blue collar man. He worked his fulltime job and then he would do contracting jobs on the side. Even on vacations my father was not happy because he felt like he should be working and that this was a waste of time being on vacation.
This disease is all of my father's worst fears coming true. He is afraid of suffocating, and he being so active his whole life is now going to be basically paralyzed. I keep thinking about this, like how is this fair to him? Everyone has to die, I am not upset that he is dying, because in some ways I have already prepared myself for that the last few years, but the way he will be dying is what makes me angry, and makes me cry. I see my father afraid and frail for the first time in my life and I try to comfort him the way he once did with me when I was young.
I feel guilty for feeling this, but shouldn't people in these situations be offered a better way out, and a chance to choose when they have had enough? I really am struggling with this disease taking my father the way it is going to take him. I just hurt so much over this. All these years we wanted a diagnosis and with it we believed we could find a way to address it. This is like being stuck under the ice, everyone is trying to help get you out, you are trying to stay close to the surface so they can see where you are, but instead you keep getting sucked under by the current and pulled further away.
I just do not know how to handle this, I am a problem solver and a person that is good with finding resources and making plans. Now, even when I try to help, in the only way I know how, my mother gets offended because she thinks that I am overstepping and trying to take over her territory (for lack of a better word). So, I am left not able to do anything. I am shut out, and left with an energy and feeling helpless. I know this is a lot, but I really need someone that understands, and maybe just will listen.
This disease is scary, and ugly. I almost feel like cancer would of been better...at least for my father it would of been. All of my father's life he was a hard working blue collar man. He worked his fulltime job and then he would do contracting jobs on the side. Even on vacations my father was not happy because he felt like he should be working and that this was a waste of time being on vacation.
This disease is all of my father's worst fears coming true. He is afraid of suffocating, and he being so active his whole life is now going to be basically paralyzed. I keep thinking about this, like how is this fair to him? Everyone has to die, I am not upset that he is dying, because in some ways I have already prepared myself for that the last few years, but the way he will be dying is what makes me angry, and makes me cry. I see my father afraid and frail for the first time in my life and I try to comfort him the way he once did with me when I was young.
I feel guilty for feeling this, but shouldn't people in these situations be offered a better way out, and a chance to choose when they have had enough? I really am struggling with this disease taking my father the way it is going to take him. I just hurt so much over this. All these years we wanted a diagnosis and with it we believed we could find a way to address it. This is like being stuck under the ice, everyone is trying to help get you out, you are trying to stay close to the surface so they can see where you are, but instead you keep getting sucked under by the current and pulled further away.
I just do not know how to handle this, I am a problem solver and a person that is good with finding resources and making plans. Now, even when I try to help, in the only way I know how, my mother gets offended because she thinks that I am overstepping and trying to take over her territory (for lack of a better word). So, I am left not able to do anything. I am shut out, and left with an energy and feeling helpless. I know this is a lot, but I really need someone that understands, and maybe just will listen.
Last edited by a moderator: