Daily Vital Signs

[kylisa]

My mother has been receiving visits from home health services every since she had her feeding tube put in.

While her color and eyes look so much better since beginning the feedings, her physical abilities are still progressing downhill. It seems at an even more rapid pace within the past couple of weeks.

My question is this. How can her daily vital signs be so good and yet, she still appears to be fading away at a fairly rapid pace?

Her B/P, Oxygen Level, and other things are great according to the home health nurse.

Is it likely she will linger on for a very long time before her vitals actually start going downhill?

 

[hopingforthebest]

Dear Kylisa:

I can only tell you what goes on with my husbands disease. His problem is the breathing issue and needs the bipap almost 20 hours a day. He still walks, in fact his legs are not affected. His arms are useless and his neck is getting weaker but he looks great. They measure his FVC's (forced vital capacity) at a low 20%.

Because of all of the above, his ALS specialist initiated hospice for his care issues. It has been a God send. I never realized how much time I spent showering him, grooming etc. All this is taken care of by hospice, while I tend to other household things.

His hospice nurse just recently told my husband that "most" of the ALS patients that she had under her care of hospice, passed from other medical issues.

I think Kylisa that ALS destroys all muscles in the body and sometimes the last in some patients is the breathing issue. So when that happens, decisions need to be made
bipap for as long as it works for the patient, and then if a patient will decide on trach/vent.

Hope I was some help and was not too frank. It is very difficult being a caregiver and especially when it is your loved one going through this. You want so much to help, to stop this "monster of a disease". We need to have time to be with friends that understand that we need a break or sometimes just a listening ear.

At this forum you will have that.

Best to you and your Mom. God bless you both,

Patty