carolinep
New member
- Joined
- Feb 26, 2009
- Messages
- 1
- Reason
- Loved one DX
- Diagnosis
- 10/2006
- Country
- US
- State
- WI
- City
- Madison
My mom is 68 and was dignosed with ALS in October 2006. She is very bad now and I think very close to the end. I moved back from CA to WI to be with her, and although she has 24 hour care, I am here, being a caretaker, at her house, 6-8 hours a day. In addition I manage all of the household things, finances,and care for all of her animals (6 of them). I have gven up everything for her. I am 29 years old and gave up my entire established adult life to come here. Since I've been here things have been horrible, even outside of the progression of her disease. The winters have been so bad, worse than in the last 30 years, and I even flipped my car over and totalled it.
In any case, everything is coming to a head right now. She is terrible. She wears her bipap 24/7 and can barely speak. I have to lean over her and listen through her mask to hear her. She has an ERICA computer but it is finicky and takes a long time and she barely ever uses it. I read someone elses post too, about the frustration. It is almost as if she has forgotten she has this disease, becasue she speaks when I am far away, in another room, in the middle of something or whatever, and I need to stop everything and come over to her to hear her. She will ask me to do something for her, and while I'm in the middle of doing it, she will ask me for something else. I can't sit down for 10 seconds. And if I ask her a simple yes or no question, she hems and haws on, which she must somehow know is pointless because I can't understand more than 30% of it. Now, even when I first come in the door I am not even greeted, I am immediately asked for something.
She has been talking about picking a date to go off of her bipap now for 2 months. She keeps saying 2-3 weeks from now, but never gets anywhere with it. We are almost out of money, I am running on empty, and I don't know what to do. Of course I love my mother, so very much, but she is no longer my mother. She may not have dementia, but this disease has changed her mentally to where she doesn't even consider other people anymore. I feel like a slave. This is not what I wanted for my life, and I really hope that it isn't what my mother wanted either, for either of us. And I know she is scared of death, but I can't imagine what this quality of life could be like, and why holding on to it is so precious. Hell, my quality of life is terrible right now even.
I just really can't do this anymore. Nothing I do is right or good enough and she always wants something more. I just need this to be over. I never thought I would turn into the person who wished for someone, let alone, my own mother's death. But I do, every day. I just want to get on with my life. My health is suffering, I want to die myself.
I guess I just need to hear it from someone else going through it, that this is ok, someone other than my therapist, or grief counselor.
In any case, everything is coming to a head right now. She is terrible. She wears her bipap 24/7 and can barely speak. I have to lean over her and listen through her mask to hear her. She has an ERICA computer but it is finicky and takes a long time and she barely ever uses it. I read someone elses post too, about the frustration. It is almost as if she has forgotten she has this disease, becasue she speaks when I am far away, in another room, in the middle of something or whatever, and I need to stop everything and come over to her to hear her. She will ask me to do something for her, and while I'm in the middle of doing it, she will ask me for something else. I can't sit down for 10 seconds. And if I ask her a simple yes or no question, she hems and haws on, which she must somehow know is pointless because I can't understand more than 30% of it. Now, even when I first come in the door I am not even greeted, I am immediately asked for something.
She has been talking about picking a date to go off of her bipap now for 2 months. She keeps saying 2-3 weeks from now, but never gets anywhere with it. We are almost out of money, I am running on empty, and I don't know what to do. Of course I love my mother, so very much, but she is no longer my mother. She may not have dementia, but this disease has changed her mentally to where she doesn't even consider other people anymore. I feel like a slave. This is not what I wanted for my life, and I really hope that it isn't what my mother wanted either, for either of us. And I know she is scared of death, but I can't imagine what this quality of life could be like, and why holding on to it is so precious. Hell, my quality of life is terrible right now even.
I just really can't do this anymore. Nothing I do is right or good enough and she always wants something more. I just need this to be over. I never thought I would turn into the person who wished for someone, let alone, my own mother's death. But I do, every day. I just want to get on with my life. My health is suffering, I want to die myself.
I guess I just need to hear it from someone else going through it, that this is ok, someone other than my therapist, or grief counselor.