So sorry for what you are going thru.. Can the hospice agency send an aide to help you. I know I just went thru this with my husband. I could only receive 4 hours of help 5 days per week. I worked and had to wait almost everyday for the aide to show up. My sister, aunt and daughter were there for most of the day which was a big help. For the first month at home I had help during the day, but as soon as I got home I took over. They had him on Morphine 2x per day time release. If he needed a break thru medicine I was able to give him Oxicodiene but that really knocked him out, but did releive the pain. He was also on Neuroton for the pain in his upper legs. I had oxygen for him if he needed it. He was up mostly every night because of the pain. Between working and being up all night the Hospice Nurse took one look at me and advised for him to be admitted to a Hospice Facility. I only agreed if I could stay and did not return to work for almost 2 months. I did not care. There is a law to protect your job when you have a spouse, parent or child that is at their end of life. But the job thought I did not know this, its sad when people cannot understand what this means to a family. Going thru this is a terribly stressful time. Can you talk to your brothers and sisters and set up a plan so all can chip in and give you a break. Believe me it catches up to you, I did not comprehend what anyone would say. I just wanted to try to do it all myself. Even the Hospice aides would say to me let us help you but I insisted doing his care, sitting up watching him, etc. Try to see if you can get some kind of help. I know sometimes the Hospice nurses just come to check the vital signs, make sure they have enough meds, etc. but I would speak with the nurse and explain that you need help. Also try to speak with the social worker. Someone has to help you at this time.
I thought I would be able to keep him home until the end but they were able to adjust his pain medicine at the Hospice unit. He also was given a Fenetyol Patch to wear and it was changed every 3 days. When the time came that he was not able to swallow his received injections for the pain.
I feel terrible for you, you need a break. Try to stay strong, you are going thru a very stressful situation now. Call the hospice facility and speak with the social worker and tell her you need more help. Even if it is for a couple hours per day you can get a bit of a break.
Best of Luck
Bernadette