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?
I'm guessing you didn't completely understand their role in your husbands care, which could be because you didn't ask the right questions, or because things weren't explained to you properly, but either way, all the way until your husband dies, if you keep him at home, you will be responsible for 99% of your husbands care while hospice does the other 1%.
So yes sadly you are wrong in this situation, and instead should be looking into hiring some in-home help to assist you with your husband, or look into placing him.
Keep in mind too that when your husband is actively dying that you can have him brought to the hospice home for him to die where he will receive 24/7 care from hospice, and that too will be covered 100% under your husbands Medicare.
My late husband was under hospice care in our home for the last 22 months of his life and was completely bedridden, and I had to stay on top of hospice constantly to make sure that my husband was receiving the care that he deserved, which meant often calling the office to voice my concerns.
So don't be afraid to speak up to ensure your husband is also receiving the care that he deserves. And if your not happy with this hospice agency, hire a different one.
I wish you the very best as you take this final journey with your husband.
EXPLAIN you need more help.
ASK what options exist.
There may be a GAP between what you expect from the Hospice service - to what the Hospice service can actually provide.
They can point you towards other supports, to fill that care GAP.
It is very very hard to care for a person at end of life stage without a BIG group of people ie a large family with willing & able people, many volunteers or paid aides & nurses in shifts.
If home is getting too hard, ASK about alternatives.
Wishing you strength & peace as you need them.
In the meantime, your husband needs comfort medication and not antibiotics to prolong his life. Hospices provide grief councellors and it may be time to ask for one.
If your hospice is Vitas, I urge you to ,ove immediately to another provider.
Yes, you are wrong in thinking you have a lawsuit.
You clearly are not accepting of the death and dying, of Hospice and etc.
You need to speak WITH HOSPICE now, not with a Forum of strangers. On the face of the little we can glean from a simple message to an online Forum you are in need of psychological counseling that is best addressed by A) Husband's medical team B) Hospice.
Please discuss with the ABOVE what you wish to discuss with us. They are aware of the patient, the diagnosis, the prognosis, and the family. WE ARE NOT. We can offer our sympathy. God knows that in the loss of the love of your life we DO offer our deepest sympathy. Like "thoughts and prayers" that is nothing compared to what you are currently facing in terms of loss. I am so very sorry. We can NONE of us imagine until we are there. I am 82. My partner is 84. We IMAGINE it all the time. And yet................we can have no idea.
I send to you my deepest heartfelt sympathy. Truly. I do.