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Elderly father with stage five

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  • Elderly father with stage five

    Six months ago my father was hospitalized with shortness of breath. His GFR was 12. It had been16 a couple of weeks before at his Doctor appointment. He also had moderate congestive heart failure. Doctors stabilized him and suggested he was not a candidate for dialysis because of his older age (90) and heart condition. They suggested he move in with me and ordered hospice. They gave me the impression he only had weeks to live. Hospice was here 24/7 for two weeks when he then stabilized and now they just come by to bathe him and occasionally an RN checks on him and orders his medication. His symptoms now are that he his very thin and always cold, he cannot sleep at night as he constantly has to urinate but it is only about a teaspoon full. He does use oxygen. He has a good appetite. His ankles are now swollen. He is very weak. His quality of life is not good. He seems depressed and a little confused. Whenever I ask him how he is all he says is he is ok. He is on a walker and goes from the bedroom to the bathroom to the living room and around he goes all day and all night for six months. Everything I have read about end stage kidney disease suggests he would live no more than a few weeks. I am happy he is still with me but it makes me feel a tremendous amount of guilt that he is not being followed by an MD. When I speak to the Hospice RN all he says is there is nothing anyone can do for him. I called the nephrologist who put him on hospice and his nurse who answers the phone would even let me speak to him. She said once a patient is on hospice he is no longer his patient. I called his personal physician and could only get through to his nurse. She said you can take him off hospice, bring him in and if the Doctor thinks he needs hospice reinstated, he will order it. I think about doing this but then hospice will take away the oxygen, the hospital bed, walker, wheelchair etc. They will also not be here to give him his shower. I feel as though this is assisted suicide or something and I would love some advice on what we should do. I am 60 and my husband is 71 and it's difficult on us taking care of him for so long. We are unable to leave him for long. If he is going to continue to live we may consider other alternatives like hiring someone or assisted living facility. If his days are numbered, I want him to live here. Any suggestions or comments are welcome. Thank you.