Ok hello everyone! My name is Mike. I am a caregiver for an ALS patient. He was diagnosed in July and now he can do nothing on his own. Well ok somethings he can do like chew his food and swallow(barely) and he can tell me how he's depressed. Now im not trying to sound like I don't care about this guy. I do. Ive been with him since September and its breaking my heart everyday to see this rapid decline of his life.
I need some help here people. Ive signed up for ALS groups around town and once and while we get a visit from the DR saying to "stay the course."
what course? he's dying and pretty soon he won't be able to tell me to scratch his nose? im upset here people. im sorry for that. Its six days a week for 12 hours a day for me with this man and his wife. im stressed and I want to connect with people that aren't gonna paste and copy and give me tons of links to where to go! email me! hell i'll give my number so we can talk on the phone. whatever it takes!
I want to continue to be positive in this guys life but every person has their limits. the family is far away and for the most part are never around.
so my questions:
communication. how do you communicate when your patient is losing his voice? flash cards? computer software?
constipation: im not sure if its the drugs or the Thicken we put in his drinks but something has to give. today he finally went after four days of being unable to go. yes we tried all the other tricks. we had ran the gambit of stool softners and other meds. finally today it happened. now he is dehydrated and very tired.
keeping the head up? patient will not wear a brace. everytime I put him on the toilet his head hangs low and he has trouble breathing. anybody got a suggestion for a solution?
ok im done ranting!
im gald to be here with everyone and i hope to make some connections. God bless everyone here fighting and dealing with this disease!
Mike
I need some help here people. Ive signed up for ALS groups around town and once and while we get a visit from the DR saying to "stay the course."
what course? he's dying and pretty soon he won't be able to tell me to scratch his nose? im upset here people. im sorry for that. Its six days a week for 12 hours a day for me with this man and his wife. im stressed and I want to connect with people that aren't gonna paste and copy and give me tons of links to where to go! email me! hell i'll give my number so we can talk on the phone. whatever it takes!
I want to continue to be positive in this guys life but every person has their limits. the family is far away and for the most part are never around.
so my questions:
communication. how do you communicate when your patient is losing his voice? flash cards? computer software?
constipation: im not sure if its the drugs or the Thicken we put in his drinks but something has to give. today he finally went after four days of being unable to go. yes we tried all the other tricks. we had ran the gambit of stool softners and other meds. finally today it happened. now he is dehydrated and very tired.
keeping the head up? patient will not wear a brace. everytime I put him on the toilet his head hangs low and he has trouble breathing. anybody got a suggestion for a solution?
ok im done ranting!
im gald to be here with everyone and i hope to make some connections. God bless everyone here fighting and dealing with this disease!
Mike