Msdclark
New member
- Joined
- Dec 10, 2020
- Messages
- 2
- Reason
- Loved one DX
- Diagnosis
- 01/2018
- Country
- US
- State
- TX
- City
- Outchonder
I don't know if this is the correct forum to post this. I am also writing out all the facts in hopes I don't have to answer questions about his state or care that may affect any answers.
My 80-year-old father was diagnosed with ALS 5 years ago. He is a fighter & the worst decline has come in the last year. He wasn't comfortable with the terminology surrounding hospice, so he did not go into hospice at-home until about 8 months ago. As of May he had lost all function to communicate except for blinking his eyes & randomly nodding his head. By June, the nodding of his head was gone. When he went into hospice, as normal, there was a DNR signed. At the time he could not physically sign it so my stepmother as his agent for Medical Power of Attorney signed it and it was witnessed by the hospice nurse. He has been using a trilogy machine for the last 2 years & cannot be taken off of it for more than a minute without panicking because he cannot get breath. He is fed via PEG because he can no longer swallow.
My stepmother is in her late 70s and does not have 24/7 at home assistance, so she reaches out consistently for help from family members and friends locally. All the family members are still in the workforce & a couple of us travel for work, so we are not available most of the time. She has caregivers that come in for periods 5 days a week to perform various tasks from washing him to just assisting with medication and changing diapers, draining urine bag, etc.
He has gone to the hospital a few times over the last few months via ambulance, mostly for infections with his catheter, aspiration, etc. My stepmother called 911 three days back because he couldn't breathe even with the trilogy. His Home Health caregiver was there at the time so he witnessed this as fact. The ambulance driver advised my stepmother and the Home Health caregiver that his lungs were not functioning and he would either have to be resuscitated or die. My stepmother revoked the DNR on the spot and the ambulance team intubated him and rushed him to the hospital.
Due to Covid, the hospital system of choice, which has all his medical records was not able to take him as an ER patient. He was in the ER for a full day in a hospital system that did not have any history of medical records. They gave him norepinephrine, ketamine and fentanyl. They gave him an MRI & xray and removed alot of mucus and fluid from his lungs. His blood pressure fluctuated drastically throughout the day even with medicine to control it. He was moved to ICU around 1030pm that night.
Again, due to Covid, hospital systems are now locked down in our state so only one individual is allowed in to his room per day, limited to 8 hours. No trading out of visits by others.
The only definitive information I have received second party from the medical staff is that they are still having a difficult time controlling his blood pressure. They were also waiting a full 24 hours to see if the fluid and mucus started filling his lungs again before making further assessment.
As I mentioned above, he was placed on a mechanical ventilator. My father's desire was not to be put on a ventilator. My stepmother cannot be convinced that a ventilator is life support. She believes that a ventilator via tracheostomy is life support but the non-invasive kind is not life support.
Most of their 6 children, sister and other close family members do not believe my father would want to live like this because of his desire to have the DNR put in place. My stepmother is having a difficult time letting go and wants to bring him home on the mechanical ventilator. I don't even know what the possibilities are since he will also need regular mucus removal. We don't know what to do.
My 80-year-old father was diagnosed with ALS 5 years ago. He is a fighter & the worst decline has come in the last year. He wasn't comfortable with the terminology surrounding hospice, so he did not go into hospice at-home until about 8 months ago. As of May he had lost all function to communicate except for blinking his eyes & randomly nodding his head. By June, the nodding of his head was gone. When he went into hospice, as normal, there was a DNR signed. At the time he could not physically sign it so my stepmother as his agent for Medical Power of Attorney signed it and it was witnessed by the hospice nurse. He has been using a trilogy machine for the last 2 years & cannot be taken off of it for more than a minute without panicking because he cannot get breath. He is fed via PEG because he can no longer swallow.
My stepmother is in her late 70s and does not have 24/7 at home assistance, so she reaches out consistently for help from family members and friends locally. All the family members are still in the workforce & a couple of us travel for work, so we are not available most of the time. She has caregivers that come in for periods 5 days a week to perform various tasks from washing him to just assisting with medication and changing diapers, draining urine bag, etc.
He has gone to the hospital a few times over the last few months via ambulance, mostly for infections with his catheter, aspiration, etc. My stepmother called 911 three days back because he couldn't breathe even with the trilogy. His Home Health caregiver was there at the time so he witnessed this as fact. The ambulance driver advised my stepmother and the Home Health caregiver that his lungs were not functioning and he would either have to be resuscitated or die. My stepmother revoked the DNR on the spot and the ambulance team intubated him and rushed him to the hospital.
Due to Covid, the hospital system of choice, which has all his medical records was not able to take him as an ER patient. He was in the ER for a full day in a hospital system that did not have any history of medical records. They gave him norepinephrine, ketamine and fentanyl. They gave him an MRI & xray and removed alot of mucus and fluid from his lungs. His blood pressure fluctuated drastically throughout the day even with medicine to control it. He was moved to ICU around 1030pm that night.
Again, due to Covid, hospital systems are now locked down in our state so only one individual is allowed in to his room per day, limited to 8 hours. No trading out of visits by others.
The only definitive information I have received second party from the medical staff is that they are still having a difficult time controlling his blood pressure. They were also waiting a full 24 hours to see if the fluid and mucus started filling his lungs again before making further assessment.
As I mentioned above, he was placed on a mechanical ventilator. My father's desire was not to be put on a ventilator. My stepmother cannot be convinced that a ventilator is life support. She believes that a ventilator via tracheostomy is life support but the non-invasive kind is not life support.
Most of their 6 children, sister and other close family members do not believe my father would want to live like this because of his desire to have the DNR put in place. My stepmother is having a difficult time letting go and wants to bring him home on the mechanical ventilator. I don't even know what the possibilities are since he will also need regular mucus removal. We don't know what to do.