Just a hodge podge...

[GilWest]

I am going to ramble about some things...

What do you do when home health is afraid of you PALS? :?:

Do you ever feel like lots of the complications you PALS has is your fault? Right now mom is on peg feeds, pain drip, vent, wound vac, and catheter. Not sure if it could have been prevented, but the nursing facility sure did not help. It was the only choice at the time.
Here in WV there are no inpatient facilities for vent patients. You have to go out of state.

when you PALS does not comprehend the situation...
I have taken leave from work to care for mom. There is simply no help for her for me to hire, even the doctors who do home visits won't take her because she is "too complex", and she just cannot be gotten out of bed anymore. I wonder if the ever think how it is to take care of a vented patient 24/7 with a grand total of 20 hous of somewhat formal training like we haven't? And I cannot quit working forever.

People love to offer what "they would have done", but they never offer to really help...nuff said about that.

People who like to talk about all the government "help" so and so got really need to read up on the Medicaid guidelines for a widowed person who actually has some cash socked away that she had planned on leaving the grandkids. In other words, they should just shut up.

Also, not everyone lives close enough to a real ALS doctor to make it practical. I am unsure why we even bothered going. They could have sent us a letter saying you are going to die in a horrible manner. Here are some drugs to treat the symptoms.

 

[dalvin]

Got to agree with you, Gil. Most of what you said can be applied anywhere you go. For the rest, well, it just shows I made the right decision not to move back to good old WV. Beautiful state but nothing for the care of people like us

 

[cheerleader]

Gil, sorry there are so many challenges for you, and it is frustrating for you to watch her suffer. Sure you are questioning every decision you've made. Just remind yourself, you did the best you could with the information you had. Is your mom able to communicate with you in any way? If she can, maybe you can ask her what she wants! As a mom, I would never want my child to have to do what you are doing. You are in my thoughts- hoping life gets easier for you both soon. You are a good son! Donna

 

[GilWest]

Believe me, a Cheerleader, I am now familiar with mom in ways I never dreamed. She is total care at this time and I am literally running the show. While I find the work rewarding and interesting, it is amazing how people are left tot their own in these types of situations.

 

[WillIHen]

Gil, sorry there are so many challenges for you, and it is frustrating for you to watch her suffer. Sure you are questioning every decision you've made. Just remind yourself, you did the best you could with the information you had. Is your mom able to communicate with you in any way? If she can, maybe you can ask her what she wants! As a mom, I would never want my child to have to do what you are doing. You are in my thoughts- hoping life gets easier for you both soon. You are a good son! Donna

i really don't know you much yet, but i second what Cheerleader said. There's sure a lot of decisions out there to make. A simple choice will change your life in an instance, but at the end of the day, whatever you choose, just learn how to deal and live with it.