Thank you for reading and any answers. I’m the caregiver for my husband whom I’ve loved for 51 years as of this June 6. We have no other family and no real friends anymore who are here for us. Our only child is our adult daughter who is estranged. My husband will be 77 and me 72 in a couple of weeks. He is completely non ambulatory so only has been out of bed when he goes by an ambulance to the hospital and has this been happening for over a year. He had a stroke 8/2017, 3 major spine surgeries (lots of hardware), COPD/asthma on oxygen 2 liters, pituitary tumor, couple of seizures over the last 8 months, prostate CA 20 years ago, elevated pulse (178) takes lopressor. A week ago he agreed to be admitted to the hospital and was dx high calcium levels which causes decreased kidney function. Has had this before. A year ago he was in the hospital dx calcium level high (first time) so had kidney failure and they found a spot on his spine as metastatic prostate CA (incorrectly dx). This was during COVID so I couldn’t see him or talk to a doctor directly. So when he was discharged I didn’t know what to do so I suggested hospice to the hospital case worker because I thought he was terminal. His PCP okayed even though I never talked to his PCP about his hospital stay and diagnoses. Few months on hospice he got better, because he never had metastatic CA and his kidney function returned to normal so he “graduated” 10/21. The most recent hospitalization was last Thursday as he has had no appetite, lethargic and several other symptoms. Dx high calcium and decreased kidney function. He began usual treatment attending doctor called with updates on his treatment and plan one which he scheduled he would see an endocrinologist (my husband’s retired two years ago). I visited every day and he was getting better and more alert. During our Tuesday visit he said someone was “mean” to him. He’s never said this before about any treatment provider. It was a his new attending doctor because she came by again when I was there. She said he couldn’t answer questions about name, etc, etc his “baseline” and brought up hospice. I said he had been on hospice and he couldn’t take his regular meds which I didn’t like and not treat his UTIs and he got better so hospice graduated him. I told her the current hospital treatment was helping and I didn’t expect him ever to be 100%. She didn’t like my response I could tell. Yesterday I went for a visit and he said same doctor same telling him to go on hospice. I should have told his nurse to call me so I could have been there when the doctor saw him because we live a couple miles away from the hospital. So I never saw her yesterday. His nurse said he would be discharged yesterday and they would schedule an ambulance for transport. Great. His lunch came I help feed him. He ate all his salmon, cookie, juice, latte, etc. I asked about no BM and she said he would have one before discharge. She called he had BM and transport was 5:30 pm. Wonderful. He arrived 6:15 last evening. He was more subdued than earlier so I let him sleep. Then during the night I checked him and he is totally different. Lethargic very little response. Today same response. Drinks a little no appetite. Contacted PCP his case worker told me to transport to hospital if we want but pushes hospice. I looked online and every symptom he’s had relates to high calcium level. The new endocrinologist office called and scheduled an appt next week. If he stays at home I think he’ll pass away before then. But is it wrong to try to keep him alive at this point. There have been other health issues but I’m addressing the one now. Thank you so much for any help, suggestions, or any input.
My husband was completely bedridden in our home and under hospice care for the last 22 months of his life. Hospice did not withhold any of his medications(and he was on a lot)and in fact over time added even more. And if they thought my husband had a UTI, an antibiotic was ordered immediately.
If you were not happy with the hospice agency you had before, go with a different one in your area, as they are not all created equal.
I know this is very hard for you, but you are now at the point where you have to do what is in the best interest of your husband. If it were me, I would let him live out his days at home(under hospice care) around the woman he's loved for 51 years. I pray that God will give you wisdom and discernment in making this decision, and that you will have peace in whatever you decide. God bless you.