It's getting harder

[TRACEY'S MOM]

Tracey was diagnosed in Oct 2008. But in the past couple of months, her deterioration has increased rapidly. Her ALS started in her left foot and has progressed so much that she now has a hard time speaking.
It's so hard to see her in pain and her anxiety level is off the charts. She takes meds for all, but she is starting to feel worthless. She has 3 kids aged 14, 11, and 9. She feels guilty because she can't stay awake when they come home from school so she can hear about their day. She is starting to feel like she has no value.
Hospice has been wonderful and her husband is truly one of the best people around. Tracey looks at George as her security blanket. But he does have to earn a living and while she knows this, she wants him home with her all the time.
Tracey has a pacer device installed on her diaphragm and has a feeding tube. My best hope is that she is able to live long enough to experience a cure or at least something to stop this terrible disease.
Does anyone have any tips on how we can help her deal with her anxiety?

 

[LizT]

Anxiety is a normal thing for PALS. Is she on any medications for this? Lots of folks take something or things for it. Heck, even us CALS need it! I know when my PALS starts having Health Anxiety- I go over close to him, and have him concentrate on something. I try to stay as calm as possible and talk him through it. I try to stop his thoughts from running away on him... I will look him straight in the eye and just calmly talk. Alot of times a soft touch can help someone relax. light back rub, hand holding, fingers thru hair- you get the point.
Hope this helps.

 

[brooksea]

Yes, its normal, as Liz has said.

Does she have Emotional Lability? That could be part of her problem. If so, there is Neudexta that works great.

 

[Barbie]

I am so sorry for your daughter's speed up. I am sure she is frightened, and as a mom she must feel so sad about leaving her kids (they are so young). You are obviously very caring and concerned--let her know her anxiety is normal and that you love her. It is so hard...