feeling so helpless & frustrated ..

[bobsgirl]

My fiance lives in upstate NY, he was recently put on Hospice care for his ALS & mild frontal dementia. I live in southern Maine (4hrs away) & drive out to see him as much as possible - twice in the past 5 days. My problem is that his mother has "power of attorney" & it seems like shes just given up on trying to get any help for him ( if possible). Shes made funeral arrangements & today posted a large DNR - Do Not Recessitate sign on the refridgerator so that if any EMT's come in the home theyll know.
I am trying desperately to do anything to help him, I cant just give up - he means everything to me. Despite him being unable to move much & wheelchair needed - he otherwise looks very healthy, is at a good weight & all. I drove to Mass. Gen. hospital in Boston yesterday, had no appt. & waited most of the day but was able to get the ALS clinic mgr. to agree to setting up an appt. for him there on Tues. They were fantastic to deal with & said they couldnt promise, but might be able to help him, were willing to give a 2nd opinion & said he may be able to do a clinical trial if he qualifies.
I was so excited because they at least were offering some hope, & they was just rated the #1 hospital in the US. But when I told this all to his mother, & asked to take him there for the appt. next wk. - she refused completely. She said she thinks its a waste of time & that they wont be able to do anything to help. I find this horrible & shocking - why wouldnt you want to at least TRY to get help, & maybe they wouldnt be able to do more but its worth a try. Im so frustrated & hurt now, I want so badly to help him but feel my hands are tied as shes got the "power of attorney" & I really have no legal rights. I also feel that if time keeps going by - then it might be too late to do anything to save him.
Has anyone had a similiar issue, any advice is appreciated. Thanks !

 

[brooksea]

It would be great to get a second opinion, if he has not been evaluated by an ALS specialist. Having said that, his mother is caring for him and perhaps has some information she has not shared with you. Maybe you should approach her and ask her to let you know everything she has learned about ALS so that you can be informed and prepare yourself. Do this in a way that you are asking to be educated by her. Be humble.

Power of attorney does not include health directives. He has to sign a document to give her the right to direct his health care. It is called differnt things: Advanced Directive, Living Will etc... POA lets her conduct business for him.

 

[Katie C]

Also..you mention he has some FTD. That could limit his acceptance to clinical trials as compliance issues are more frequent. Maybe you and mom-in-law-almost need to go out to lunch and have a good talk. I agree that as caregivers we sometimes choose to not share some things, either feeling protective towards our PALS or just not wanting to get into it again.