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.

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Call them and tell them you can't do it anymore. That's what I did with my dad, and they were out there in two hours and didn't leave until his body was picked up by the mortuary about 24 hours later.

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.
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Carol, you cannot and should not force your dad to eat in his last days. He no longer has any control over where the food goes and it could cause aspiration pneumonia if it gets into his lungs.

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.
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carol3810 Mar 2021
I realize that now but I did not know that at the time. I didn't realize how bad he was because they never told me what was going on and how far along he was. I feel awful about it now. He could eat a very little but no matter how much it was thickened he would cough. They knew I was doing this and never told me not too. They just prescribed Cuvposa for him. But he pointed to his throat and barely talking said how bad it hurts. I thought he would have to have something to eat or he would starve to death and I thought that would be very painful. It wasn't till I called the number after he was hurting and a different person who works for them told me the facts about end of life and what happens. While my mother died of this too it was unexpected and one week after we put her in a really good memory care facility. That was totally shocking to me and my father because we really don't think she should have died. She wasn't that bad but my dad could no longer care for her. After that, I promised my dad he would die at home no matter what.
You can request that a nurse come every day when someone is in the dying process. It's a shame that it's not automatic that they come to be with you and your LO. I had to learn that the hard way when my husband was in his dying process. Thankfully my husbands nurse told me that if I wanted someone there, that I had to let them know, which of course I did, as in my husbands case, it was quite traumatic to witness his dying process, as he was in excruciating pain that hospice never could get under control. For the most part the nurse was only here about an hour or so each time they came. Although one time hospice sent a nurse to spend all day here and another to spend the night(so here 24 hrs)so I could get some much needed rest. You can also request that towards the end. So don't be afraid to use your voice and request any and all help they can provide. That is what they are supposed to be there for. God bless you for taking such good care of your father.
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I would ask the nurse that is visiting why she did not explain to you what was going on and what you should be doing.
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)
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So sorry you’re going through this with your dad. Our hospice services when I walked through this with my dad definitely came more in his last week. That may have been because I called them often and our conversation would prompt them to come. The visits were mostly brief, but a few times the nurse would stay longer. Call them anytime you have questions or concerns. I wish you both peace
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