JamieL
Active member
- Joined
- Feb 19, 2013
- Messages
- 51
- Reason
- Loved one DX
- Diagnosis
- 02/2013
- Country
- US
- State
- Texas
- City
- Dallas
Amber, I am dealing with ALS with my mother, diagnosed in February 2013. She is still mobile and has full use of her arms. Her onset is bulbar. We can understand her fine still, but her speech is getting worse, as is her swallowing.
I fully understand your need to "help" and balance that with not overwhelming your PALS (or in our case, their spouse/CALS). I think these things are upsetting to my dad as much as my mom. I warned him/her about the wheelchair thing and how it can take months to get them and you want to stay ahead of progression. I try to temper that with "she may never even need it." But they know full well that means "she may have her diaphragm impacted and still have use of her legs up to the point that she dies from this monster of a disease." None of it is pleasant. My dad does not want to order the wheelchair because he said it will be upsetting to her to SEE it there. Even if she doesn't need it. Maybe your grandfather sees the hospital bed that way. My mom knows she will have better quality of life if she gets a PEG because she chokes so easily. So I thinking SEEING it and understand what it is and what it isn't did help her. Then I had to make a concerted effort to BACK OFF and not bring it up again. She's more aware than anyone of her weight loss and how hard it is to eat now. She didn't suddenly forget that the PEG is an option. I have to keep telling myself that.
My folks intentionally built their house with a full master suite upstairs (where they sleep now) AND downstairs just in case they needed it. They build this house after retirement so it was something they considered. Well, that time has come. But my mom has dug her heels in and will NOT move to the HUGE downstairs master bedroom. The one upstairs is her "dream room" and I can respect the fact that she isn't willing to let this disease take one more thing from her. So my dad is getting one of those chair lift things installed. This is a mental and emotional drain as well as physical.
I fully understand your need to "help" and balance that with not overwhelming your PALS (or in our case, their spouse/CALS). I think these things are upsetting to my dad as much as my mom. I warned him/her about the wheelchair thing and how it can take months to get them and you want to stay ahead of progression. I try to temper that with "she may never even need it." But they know full well that means "she may have her diaphragm impacted and still have use of her legs up to the point that she dies from this monster of a disease." None of it is pleasant. My dad does not want to order the wheelchair because he said it will be upsetting to her to SEE it there. Even if she doesn't need it. Maybe your grandfather sees the hospital bed that way. My mom knows she will have better quality of life if she gets a PEG because she chokes so easily. So I thinking SEEING it and understand what it is and what it isn't did help her. Then I had to make a concerted effort to BACK OFF and not bring it up again. She's more aware than anyone of her weight loss and how hard it is to eat now. She didn't suddenly forget that the PEG is an option. I have to keep telling myself that.
My folks intentionally built their house with a full master suite upstairs (where they sleep now) AND downstairs just in case they needed it. They build this house after retirement so it was something they considered. Well, that time has come. But my mom has dug her heels in and will NOT move to the HUGE downstairs master bedroom. The one upstairs is her "dream room" and I can respect the fact that she isn't willing to let this disease take one more thing from her. So my dad is getting one of those chair lift things installed. This is a mental and emotional drain as well as physical.
