csabados
Member
- Joined
- May 3, 2014
- Messages
- 18
- Reason
- Loved one DX
- Diagnosis
- 05/2014
- Country
- US
- State
- OR
- City
- Rogue River
Anticipatory grief is a real thing, yet there are no support groups for it. I have asked at a couple Hospices and their grief support groups are only for after the passing.
Quickly, my mom is the one with ALS. Bulbar onset so she is still mobile, some difficulty swallowing but basically holding her own. She still lives alone and won't every admit if something is bothering her. Seems to be slow progression for now. Major complaint right now is she has almost completely lost her speech and she does tire easily. She is spending all her time and energy planning the when and how. She plans to use the Oregon law. She so wants it all to be over. She was so distraught when the doctor said her numbers all looked good. I think she wanted that 6 month number so she could get her prescription. She is so independent and not wanting to burden any of us. We have all agreed we support her and want to be there with her. She won't talk to me. She goes off and makes plans by herself. My biggest fear is not being there and I would not put it past her to disappear somewhere to die alone so we don't have to see it. That would be the worst for me.
Bottom line is she is going to die, hopefully, peacefully in her bed. I want so badly to SCREAM You don't have to live with the choices you make, we do. I support her choices, but I have to know what they are!
Only she knows when the right time is but the doctors won't sign the papers (2 doctors, 2 requests each, 15 days apart) until after they agree on a 6 month diagnosis. With her numbers still in the high 90% (one was 110%, it could be a while. Good news/Bad news. Such a double edged sword for someone who has no interest in getting on with living. I signed up to keep her off a ventilator and out of pain, not just because she can't talk or drive or wipe her own butt.
Sorry for venting/babbling. I'm upset and hurting, angry and frustrated... all that. I know I need to talk to her, to make the conversation happen or I will regret it and have to live with it. I always feel it's more about me. I have decided that it is about me too. I cannot go on without knowing I did everything I could. If she is never going to talk to me or let me help her or has no intention of letting me be there, I need to know so I can back off, not like I could ever do that. Question is what and how much of that do I actually say. Can I really make it any worse than it already is?
It's late. Goodnight and if you took the time for me, I thank you very much. I could really use a friend. Seems like you are all very helpful.
Quickly, my mom is the one with ALS. Bulbar onset so she is still mobile, some difficulty swallowing but basically holding her own. She still lives alone and won't every admit if something is bothering her. Seems to be slow progression for now. Major complaint right now is she has almost completely lost her speech and she does tire easily. She is spending all her time and energy planning the when and how. She plans to use the Oregon law. She so wants it all to be over. She was so distraught when the doctor said her numbers all looked good. I think she wanted that 6 month number so she could get her prescription. She is so independent and not wanting to burden any of us. We have all agreed we support her and want to be there with her. She won't talk to me. She goes off and makes plans by herself. My biggest fear is not being there and I would not put it past her to disappear somewhere to die alone so we don't have to see it. That would be the worst for me.
Bottom line is she is going to die, hopefully, peacefully in her bed. I want so badly to SCREAM You don't have to live with the choices you make, we do. I support her choices, but I have to know what they are!
Only she knows when the right time is but the doctors won't sign the papers (2 doctors, 2 requests each, 15 days apart) until after they agree on a 6 month diagnosis. With her numbers still in the high 90% (one was 110%, it could be a while. Good news/Bad news. Such a double edged sword for someone who has no interest in getting on with living. I signed up to keep her off a ventilator and out of pain, not just because she can't talk or drive or wipe her own butt.
Sorry for venting/babbling. I'm upset and hurting, angry and frustrated... all that. I know I need to talk to her, to make the conversation happen or I will regret it and have to live with it. I always feel it's more about me. I have decided that it is about me too. I cannot go on without knowing I did everything I could. If she is never going to talk to me or let me help her or has no intention of letting me be there, I need to know so I can back off, not like I could ever do that. Question is what and how much of that do I actually say. Can I really make it any worse than it already is?
It's late. Goodnight and if you took the time for me, I thank you very much. I could really use a friend. Seems like you are all very helpful.