I'm scared - Page 2

5labudas · 02-08-2005, 10:49 PM

Our prayers are with you and your mom, too. You said all your mom wants to talk about is dying...Are you talking to her about it? It may be her way of wanting to know if your okay with it or understand it all and knowing that she'll be okay. I know it's hard, and I'm dreading the day that may happen to our family, but it's something that we all have to think about when faced with this dreaded diagnosis.

Tiffyholman · 02-08-2005, 10:59 PM

yes I let her talk, but she is on the ventilator, so she could live indefinetly with it. And we are weaning her off of it, but that has to be her choice. She knows she will die if she get's off the ventilator. One day she want's to stop using it and the next she wants it on all day. She is just so scared and I totally see where she is coming from she wants to live so bad, but not being able to move or speak will destroy her. Which now she can still speak sometimes, but she doesn't really have any movement in the rest of her body. And she's in pain all the time, it's terrible. She also has a peg tube, and that's hard cuz she loved to eat before and she just cries when she talks about it. Do you have a loved one with ALS? If so I am so very sorry I wouldn't wish this on my worst enemy no one or no family should have to go through this. I'll be praying for you also, I couldn't make it without the Lord and my family

tip2mol · 02-09-2005, 08:37 AM

Hi,

Just a suggestion for your Mom. You had stated that she is usually in pain.
Technically- ALS is not a painful disease, however- something that I noticed in many of my patients in hospice that had ALS- were them describing their muscle spasms as pain. Before- I realized this, I would put them on pain medications but they had very little relief. I then started putting all of my patients with ALS on Baclofen (or something similiar) for muscle spasms. This did wonders for them and no further complaints of pain. Another thing to consider- if your Mom is not on any anti-anxiety medications- is that anxiety itself is very uncomfortable and even might be translated as pain- since the body can not relax. These are two items that you might want to discuss with your Moms physician.

Tiffyholman · 02-09-2005, 11:23 AM

yes My mom is on lot's of anxiety medicine seraquel, clonzepam, remeron, and doxepin. The pain thing is probably right, although she has a lot of swelling in her right arm cuz she can't use it at all no movement. We try to put it on a pillow to keep it up above her heart so the swelling will go down, any suggestions?