Mageejj
Member
- Joined
- Jun 17, 2013
- Messages
- 12
- Reason
- PALS
- Diagnosis
- 04/2021
- Country
- US
- State
- OK
- City
- Tulsa
Hello,
I am new to the forum. My father was diagnosed with ALS with FTD on January 3,2013.
At the time he was walking, talking, still driving, and working. Since then he has declined at an amazing rate. My mother and I have been able to handle the caregiving until this last week. He is totally incontinent now, soiling floors, beds, chairs, etc, continuously. He has been unable to get out of his bed or chairs. He is having lots of difficulty while eating and is eating very little. We chose to forgoe the PEG according to his wishes. He has a ventilator but refuses to keep it on. Within the last few days he's become unable to dress, bathe, and feed himself. He is cognitively and physically unable to complete day to day tasks at home and is becoming increasingly dangerous to himself. He is resistant to much of our help in these matters and often becomes violent. He is so weak physically it is really of no threat to us. He spends most of his day staring at the TV. He is essentially mute at this point. He might get one word out a day. He has a communication device but has become mentally unable to use it. Same goes for the electric wheelchair. He was totally incapable of running it.
At this point we cannot handle the 24 care he needs on our own. We're not sure if home health care will be beneficial or if we need to look into other options. My mother is totally burnt out at this point and is really having difficulties handling his constant need for care. Does anyone have any advice or recommendations on what we can do?
I am new to the forum. My father was diagnosed with ALS with FTD on January 3,2013.
At the time he was walking, talking, still driving, and working. Since then he has declined at an amazing rate. My mother and I have been able to handle the caregiving until this last week. He is totally incontinent now, soiling floors, beds, chairs, etc, continuously. He has been unable to get out of his bed or chairs. He is having lots of difficulty while eating and is eating very little. We chose to forgoe the PEG according to his wishes. He has a ventilator but refuses to keep it on. Within the last few days he's become unable to dress, bathe, and feed himself. He is cognitively and physically unable to complete day to day tasks at home and is becoming increasingly dangerous to himself. He is resistant to much of our help in these matters and often becomes violent. He is so weak physically it is really of no threat to us. He spends most of his day staring at the TV. He is essentially mute at this point. He might get one word out a day. He has a communication device but has become mentally unable to use it. Same goes for the electric wheelchair. He was totally incapable of running it.
At this point we cannot handle the 24 care he needs on our own. We're not sure if home health care will be beneficial or if we need to look into other options. My mother is totally burnt out at this point and is really having difficulties handling his constant need for care. Does anyone have any advice or recommendations on what we can do?