MarciaA
Distinguished member
- Joined
- Mar 13, 2006
- Messages
- 118
- Reason
- PALS
- Country
- US
- State
- MN
- City
- Owatonna
Hey there!
I apologize if this post rambles and is hard to follow, but I really need to vent and you guys are so awesome at giving me advice!
I'm trying to figure out how to achieve a balance between feeling mad/sad/worried and having acceptance. I know that I shouldn't expend a lot of energy trying to control things that are simply uncontrollable. But saying this and doing this are two totally separate things. I have been enjoying organizing the team for the ALS Walk...it seems to give me hope. But then there are times that I'm filled with such saddness for her, her husband, my parents, me (which I see as being totally selfish and wrong), my daughters, etc. I read another post about driving nails into a board...I may have to try something like that. Does anyone have ideas or advice about how to achieve a balance? Teh whole thing still seems so surreal!
I see my sister struggling more and more both physically and emotionally. She is starting to need more help, but sometimes has a hard time accepting it from others. We are throwing her a Garden Party to help plant flowers and veggies. One of her comments was "It's nice that my garden will look nice one last time." She also has said that she thinks people are viewing her as a "project" and that the ALS will last too long and they won't want to help anymore...especially once she's not so "charming" (her words...not mine). She seems to be focusing on the things she can't do anymore. Less than a year ago, she and her husband went to the Pyranees on a yoga vacation. Now she can't do the standing positions anymore and actually fell and sprained her ankle (the good one) while doing a modified pose. Because the exercise thing doesn't work anymore, she's gaining some weight. So now I've noticed that she says 'no' to foods that she loves because to me it seems as if she's counting calories. I told her that "fat guys live longer"...she laughed, but didn't seem convinced. She's looked into disability retirement, but since she doesn't know how long this ride will be, she doesn't know which package to select. Plus, she would need to drain her sick leave (all 36 weeks of it) before she could retire.
I don't always know if what I say to her is the right thing or not. I also don't know how to help her focus on what she can do and not on what she can't. I don't want to make it seem like we have to cram all sorts of fun things in now, but yet I want to spend all the time I can with her. This whole thing is just SO frustrating!
Anyway, again I apologize for rambling on...but I had to get some things off my chest. I look forward to hearing your comments and advice. Thanks!
Marcia
I apologize if this post rambles and is hard to follow, but I really need to vent and you guys are so awesome at giving me advice!
I'm trying to figure out how to achieve a balance between feeling mad/sad/worried and having acceptance. I know that I shouldn't expend a lot of energy trying to control things that are simply uncontrollable. But saying this and doing this are two totally separate things. I have been enjoying organizing the team for the ALS Walk...it seems to give me hope. But then there are times that I'm filled with such saddness for her, her husband, my parents, me (which I see as being totally selfish and wrong), my daughters, etc. I read another post about driving nails into a board...I may have to try something like that. Does anyone have ideas or advice about how to achieve a balance? Teh whole thing still seems so surreal!
I see my sister struggling more and more both physically and emotionally. She is starting to need more help, but sometimes has a hard time accepting it from others. We are throwing her a Garden Party to help plant flowers and veggies. One of her comments was "It's nice that my garden will look nice one last time." She also has said that she thinks people are viewing her as a "project" and that the ALS will last too long and they won't want to help anymore...especially once she's not so "charming" (her words...not mine). She seems to be focusing on the things she can't do anymore. Less than a year ago, she and her husband went to the Pyranees on a yoga vacation. Now she can't do the standing positions anymore and actually fell and sprained her ankle (the good one) while doing a modified pose. Because the exercise thing doesn't work anymore, she's gaining some weight. So now I've noticed that she says 'no' to foods that she loves because to me it seems as if she's counting calories. I told her that "fat guys live longer"...she laughed, but didn't seem convinced. She's looked into disability retirement, but since she doesn't know how long this ride will be, she doesn't know which package to select. Plus, she would need to drain her sick leave (all 36 weeks of it) before she could retire.
I don't always know if what I say to her is the right thing or not. I also don't know how to help her focus on what she can do and not on what she can't. I don't want to make it seem like we have to cram all sorts of fun things in now, but yet I want to spend all the time I can with her. This whole thing is just SO frustrating!
Anyway, again I apologize for rambling on...but I had to get some things off my chest. I look forward to hearing your comments and advice. Thanks!
Marcia