Does anyone have any experience with hospice care? Husband has COPD, CHF & diabetes, kidney and possible liver issues. He just came home from the hospital after being there for a week. He was admitted because couldn’t breathe and his legs, feet and stomach swelled up because of the water he was retaining. His legs were so bad he now has huge wounds on both of his legs that ruptured to let the water out. I’m so worried about amputation even though it hasn’t been mentioned his leg looks awful. They are scheduling a Doctor, a visiting nurse, a physical therapist, a wound care nurse because he’s not ambulatory enough to get to the wound center. He doesn’t want to eat and says he’s not hungry but if I put food in front of him he will eat it. It’s very slow getting the care he needs since he only got home this past Tuesday at 9:30 PM while it was snowing out! It’s been so hard and he’s only been home 49 hours and I feel as if I’m watching him die. The Doctor (cardiologist, pulmonologist, nephrologist) is coming this Tuesday because again he’s not ambulatory enough to get down the front steps. The ambulance EMTs carry him in and out every time.
He gets up and walks to the bathroom thank God but other than that he sleeps a lot. He’s slept on the couch for years and within the last few weeks has started sleeping sitting up. He’s been on oxygen 24/7 now for almost a year.
Does anyone know how Hospice works? Do I bring this up to the Doctor? Do people on Hospice get better care than people just getting in home Care with Doctors and Nurses and Therapists coming in?
We have Original Medicare with a supplemental plan. Would Hospice be covered? Visiting nurse says basically they’ll only come for a few weeks to do wound care and very little after that. In fact she mentioned teaching me how to take care of the wound. I told her that I have one good hand since I broke my wrist years ago and I wouldn’t even be able to even use a glove on the hand that has an issue since four out of five fingers can’t straighten up. How is something like that addressed? So any insight or information about Hospice and how it works would be appreciated. Thank you.
Did anyone at the hospital or the Visiting Nurse mention hospice? How old is your husband...and what are his wishes? Has he been in the hospital a lot?Hospice is end of life/comfort care and generally means no more trips to the hospital, no curative treatments, usually no PT. Medicare covers Hospice care which includes nurse visits (frequency depends on patients condition) and an aide maybe twice a week for personal care and a social worker and chaplain if desired.
The services you get and the focus of the services differ between visiting nurse and hospice. A stay at a rehab facility or visiting nurse at home is to help a patient get as close as possible back to how they were prior to their hospital stay. Hospice is for when you or your body is ready to go. Either way, the majority of care falls on the spouse/caregiver who may need additional paid help.
Based on my experience, I suggest you research hospices in your area and get an evaluation. If your husband qualifies, they can get an "order" from the doctor. (When I asked my mom's PCP about hospice, he said "we are not there yet"...but later when a Visiting Nurse said it was appropriate, her doctor was all in)
Hope this helps and you and your husband figure out what's best for your situation.
As time goes by, he will eat and drink less. It is good that you leave some food available for when he chooses. No need to be hot and nutricious. He will be taking in fewer calories. He will get weak and no longer get out of bed. That means incontinence supplies will be provided through hospice. Staff will train you to do things independently as long as his weight is not a burden to your health. If 2 persons are needed to turn him, you will need extra help. You will also get guidance on giving proper meds and how to recognize when needed. When he sleeps many hours, some family find this is a time to get out for a short break.
Hospice staff should guide you and answer your questions. You should have a 24 hour number for any additional questions, including grief counseling.
You have a medical question about amputation. This is a question to the doctor. It might be that having surgery may cause early death from the procedure. So we should not be able to answer this.