My husband is in hospice he has brain and lung cancer. They put him in hospice because of his brain tumors. He got sick 3 weeks ago chest congestion I asked the nurse and called the hotline to ask for antibiotics they would not give him anything until he got really bad. He has went from being able to setup walk to now he can't even hold his head up. I take care of him meaning I have to lift him to move him and clean him and he is bigger than I am. I called hospice asking can't I get help? They messed his meds all up in the start finally got that fixed then he got sick and it took them 3 weeks to give him anything. He should not be this bad right now. Hospice told me the only job they have to do is have the nurse come down vitals and meds. They can have someone give him a bath but that's it. It is my responsibility to take care and do everything else not theirs. I have never had to use hospice but some has been telling me that's not right. That they are supposed to help make things easier and all I do is cry and watch my husband get worse and I told him I promise I will always take care of him. But when you're watching your husband 24 7 and doing everything by yourself. I can't even take a shower unless I can get someone to come visit and set with him for a few. Am I wrong or do I have a lawsuit and need to find a new hospice?
My MIL was in hospice at our home. I was very lucky that my husband was right there by my side doing everything with me. It was still hard. When one of us had to do the shopping, the other was on their own with her. We were up every night responding to her calls for pain medication. It was hard. Hospice did the same things they are doing for your husband. The hard truth is they are there for the patient’s medical needs, not the caregiver’s needs however great they are.
I think you should get some help. You shouldn’t be lifting him by yourself and you should be able to take a shower, have a meal, even get away for a breather if you need. Do you have family that could come for a few hours to give you some respite? A church you could turn to? If none of these are possible, hire some help. I believe there are minimum hours that an agency will require but you surely will need someone every day or at least every other day.
I have heard where hospice may not treat something like an infection if the patient can be kept comfortable. Of course you can cancel hospice if you disagree and want him treated. You (and he) have the final say.
Some hospices are operated as non-profit through a religious or charitable organization and I have heard you may get better care and are not relentlessly pursued for final payment. A for-profit organization may be cutting corners on their expenses for a larger profit. My father had hospice but my sister who lived closest was the decision maker so this is only what I have been told by her and others. In the 36 years since my husband was diagnosed, I have lost count of the times I have been told by hospice agencies that Parkinson's is a diagnosis that would qualify him for hospice and I should consider it. I like to think a non-profit agency would not beat the bushes for new patients. I totally believe in hospice and will definitely use it appropriately when necessary. Below are a couple of links with more info.
https://www.hospicereport.com/how-for-profit-hospices-compare-to-non-profit-hospices/
https://pubmed.ncbi.nlm.nih.gov/22527254/
The one you use should fit well for you and your husband ( considering you are walking through hell)
The most important criteria should be compassion and guidance during this horrible time.
Unfortunately the actual labor is NOT MUCH. A weekly nurse visit and twice weekly bath. A visit by other specialties such as the chaplain.
If there is a hospice “house” or other facility available ( such as a nursing home with an available hospice bed), there is RESPITE. You could use some respite. Or a nursing home if the truth were known.
A volunteer may offer amenities such as cutting your grass or whatever their talent allows ( maybe a sitter ?)
Talk to other hospices and people who have used them.
If you feel you may need antibiotics or an ER visit, learn how and how quickly you can come off ( and back on) hospice. This is a really really hard part because pneumonia has long been considered the “old folks friend” and the easy way to “go”, but it is NOT easy for loved ones now that we have antibiotics.