I don't know how he does it either. Just knowing that he has beaten the estimates each new day must keep him going.
I am all for finding another hospice, if they are that plentiful. Your dad deserves someon who will fight for him as hard as he is fighting for himself.
Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.
08/08/08...RC neo bladder
New Man! [/size]
First I am so sorry to read about your dad's being to the point of hospice. But, like Sarah Anne I think you need to check with one of the other Hospice care companies if there are that many in your area surely you can find one who will offer the correct care for all concerned in this time of need. Wishing you the very best for strength and peace at this difficult time!
So sorry to hear about all of this! You mentioned that there are lots of Hospice organizations in your area. I strongly advise you to check on switching to another. Both my mother and my father (at separate times) were under Hospice care and it was absolutely wonderful
In my father's case, he was at home (congestive heart failure) and Mom was his only caregiver. Hospice provided a wheel chair, commode, and other bedside aides. His nurse came in once a week or when called; he had a young man who came in every other day to help him shower and shave. The social worker arranged for Mom to have help with the housework and a respite worker came every week because otherwise Mom couldn't have left him for marketing, doctor's appointments, hair appointments, or just to get away. We, and especially Mom, couldn't have done it without their wonderful help.
When we had Hospice for Mom, she was already living in an assisted living unit. The people there told us that without Hospice she would have to go into a nursing home. With Hospice she was able to stay where she was; they were called by the facility when meds or additional care was needed. They provided a hospital bed which made her care easier for the attendants. Again (and this was in a different state than when Daddy was ill) a nurse came several times a week and when called, even in the middle of the night. It made all the difference in the world for her last few weeks.
I hope that you can find a Hospice organization that can provide what your family needs.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Since Dad's bladder cancer has recurred after 6 years of being "cancer free", he has been placed in the care of hospice but not for his cancer. His kidneys suddenly shut down and his creatinine was measured at 9! His potassium also was critically high so he was admitted to the hospital for 5 days where they gave him fluids, treated him for the elevated potassium and did not do much more. When he left the hospital, his oncologist contacted one of the local hospice care groups (apparently there are 90 just in our local city!)and Dad is now officially a hospice patient. He is at home and the hospice nurse comes once a week to check on him. We can call if we need something or have questions, but you have to go through an answering service who has to page somebody who has to call you back, supposedly within 15 minutes. Last call I made to them, it took almost 2 hours for the nurse to call back! Of course, I had called the office back long before then and talked to the "triage person".
Right now, my opinion of hospice is that they are nice drug pushers. Not sure what I expected. I suppose my Dad is doing too well for them to get too involved. They say we can have an aide to help him with showering and dressing, but so far, he can do that for himself. Nothing at all has been offered as far as support for family. The social worker came for a visit but mainly talked about how much she disliked Obama. We got absolutely nothing informational out of her visit.
Unfortunately, we are going to have to change Dad's pain meds since apparently hospice can no longer get oxycontin. What is the deal with that? It manages Dad's pain really well and now we have to try to find something else. Why is Medicare dropping oxycontin??
Dad is getting radiation treatments for his tumor recurrence on the ureter. He is getting 15 treatments of which he has now had 4. The day we left the hospital, the oncologist told me Dad probably only had "days or maybe a week" left. It has now been two weeks and he is walking and talking and eating and getting dressed every morning and also going to radiation! He is the bravest, toughest man I have ever known.
I am blessed to still have him in my life but it is hard knowing that he has to wake up each day knowing that his days are numbered. How does anyone even do that?