Sasha58
Active member
- Joined
- Jun 17, 2018
- Messages
- 43
- Reason
- Lost a loved one
- Diagnosis
- 06/2016
- Country
- US
- State
- Florida
- City
- Broward
Hi everyone. Im new here just found this forum....My hubby was diagnosed 2016 when his right arm and hand began to lose function. Fast forward to now, and he is bed bound on a vent at home and total care.....Thats two short sentences, but in between those years of 2016 until now, we’ve had to deal with the emotions, the tears, the lack of help, learning how to deal with someone who said they never wanted to be trached or have a peg tube, end up with a trach and a peg tube, because at the time they were frightened, couldn't breathe, and was fully cognizant of their decision but in the heat of the moment wanted to breathe properly....He was on bipap but started retaining CO2, was intubated, got extubated and back to a vent then he said he wanted to breathe.....
I'm very fortunate that I have three daughters who moved back in to help. I also pay someone to come in five days a week for him so teresa and my youngest daughter look after him during the day and I do it on weekends with all the girls.... Occasionally, I have to admit I break down now and then because of the sheer responsibility... there was a time that my husband wanted hospice but they don’t take vented patients and the thought of him going on a trach collar which will not help him gives me chills and I will not allow it because he would be awake and alert
I'm very fortunate that I have three daughters who moved back in to help. I also pay someone to come in five days a week for him so teresa and my youngest daughter look after him during the day and I do it on weekends with all the girls.... Occasionally, I have to admit I break down now and then because of the sheer responsibility... there was a time that my husband wanted hospice but they don’t take vented patients and the thought of him going on a trach collar which will not help him gives me chills and I will not allow it because he would be awake and alert