tough week

It's been a tough week.  Dad's having trouble with bad upper back pain and just can't get comfortable. We suspect that it's musculoskeletal pain.  He is restless and changes position very frequently, moving from recliner to couch to bed.  Adjustments have been made in his medications, adding a fentanyl patch to help with pain and breathing, and plain old ibuprofen and tylenol for his pain.  He can use lorazepam for the edginess.  Morphine is probably the best option for his breathing, but he doesn't use it often because it makes him feel woozy.   It's a challenge to get him to try anything, because he doesn't like how medicines make him feel.  And it is soooo hard to see him so miserable.  He seems to be napping more, but the nights have been worse.  We are waiting for a lidocaine patch to arrive tomorrow and we really hope that it will give him some relief.  The shortness of breath just continues, and he doesn't want the bipap.  His appetite is nonexistent, and he eats only a few bites at best.  His fluid intake is very, very poor. 
The medication situation is hard for me as a nurse, because I want him so badly to use the medications on a scheduled consistent basis, to stay ahead of the pain, restlessness and shortness of breath.  But it's not my call, it's Dad's, and he has never been a fan of medicines.  So we gently ask and suggest, but ultimately he's the boss.  It's just so hard to see him miserable.  Nurse Lynette wants to push meds to help with comfort, and daughter Lynette wants to see him drink, even though I understand him not wanting to prolong.  This is not easy.  I knew that ALS would cause progressive weakness, loss of motor function, and respiratory failure.  What I did not realize is that it would cause such a profound malaise.  He just feels awful. 
We prayed so hard for a cure.  Now we pray for comfort.