My dad is currently dying. He has Alzheimer's and dysphagia and can't drink or eat. He hasn't eaten or drank anything in 4 days. Hospice gave use morphine to give him but only comes by twice a week. I am very disappointed in this Hospice. They really didn't really let me know that he was in this death cycle. They would just take his BP and say if he's in any pain let us know. Well I was basically forcing him to eat and drink (not a lot) and he would cough and it caused him a lot of pain. I since learned this actually causes them more pain and they aren't starving and in pain like a normal body would be. I learned this because I called the hopice a wonderful nurse explained this to me. Why didn't the nurse that was seeing him tell me this and tell how close to dying he was? Is it normal for them to spend such a small amount of time here in the end? It's just me and another caretaker that cares for him and I would think now they would be here more.
Is the CNA visiting as well? The CNA could have answered some of your questions (within their scope of care) but the CNA would have brought up at the meetings that you had questions that were not being addressed.
You can and probably should call the Hospice and ask to talk to the Team manager and ask why some of these things were not discussed with you.
The Nurse should along with the BP be checking for bowel sounds, listening to the lungs and ...this is important... checking his skin for
1.) pressure sores
2.) skin mottling
either of these can indicate if a person has entered into "active dying"
I am sorry you are having this experience with your particular Hospice. It is worth a phone call. It might be possible that the Nurse you have is new, inexperienced in the ways of Hospice, or over worked (not that that is an excuse!)
Also when you contact the Team manager let them know how much time is being spent with your dad. The field people do fill out medical records and on that they indicate how much time they spend with the patient there might be a discrepancy as to how much time is being charted and how much time is actually spent. (not that I like to think someone would falsify a time card but it does happen)
You certainly aren't getting appropriate service from your hospice agency. Hospice nurses can, or should be able to, tell when a person's body is shutting down and he is in the final days. The last 14 days of my wife's life, a hospice nurse was with her 24/7, in 12 hour shifts, providing comfort, care and companionship. The nurse would monitor her vitals, provide morphine for pain as needed, massage her arms and legs, change her when necessary, change her position to prevent sores, and even comb her hair. They should provide comfort as needed and the dignity that is deserved.
They can't read your mind, and they may not know how close he is to dying. You need to communicate with them as much as you think they should be communicating with you.
For what it's worth, too, I had to fire the first hospice company we had for my dad. They weren't responsive and they were just terrible in every way. Fortunately, we got a new company about 10 days before Dad passed away, so we weren't changing things around while he was actively dying. You need to press on your current company to step up and be there for you and your dad.