My mother has just started palliative care after being in the hospital for over a week. Her stay there began with a blood infection of which the origin could not be located. She was treated with IV antibiotics which could not cure the infection. While there she also developed heart problems which were stabilized. Yesterday at the hospital two doctors kindly discussed the time for hospice for her. She was transferred today to a nursing home and is in palliative care which seems much better than hospice. It was explained to me that Medicare would cover this care for some time and then her secondary would take over if she is still alive. She is requiring oxygen. I guess I was wondering if anyone could discuss their experiences with a loved one on palliative care. I feel that no one wants to tell me outright that she is dying. She is very weak but seems to want to live. I have come to terms with her dying. I have told close family members about her situation. I guess I am just wondering how this plays out or what others experiences are. I have known of others on hospice. I am grateful she is being put on palliative care. I just wonder what this might be like day to day if we get that far.
My mother is requiring alot of oxygen and doesn't understand why. I keep explaining she has a blood infection that is proving hard to cure and this is causing stress on her lungs. I just repeat what doctors have told me.
My worthless advice is that the end comes even though one may feel their end will come first and I know that sadly often happens. I guess I would take back the exhausting and mostly fruitless efforts to have my mother change in order to help her health. Just accept who they are as long as it is bearable. Then you don't have to beat up on yourself when you get to this point.
I am fortunate we can tell each other we love each other.
We are different people with different values but that is what life is about. I needed to have found more acceptance sooner.
At least I know I have tried to advocate for her. I did let go lately of what I could not control but I feel alot of that is Covid related.
I just recommend doing one's best to make as much peace as possible even if it doesn't come naturally. Because all the concerns will end one day and then one is left with many memories. It is best if there are many happy ones mixed in with all others.
We put my mom on palliative care after a couple of lung taps for fluid build-up (and the pulmonologist told us not to do any more) and a horrific hospital stay for sepsis.
It was clear to us that each hospital stay was causing more harm than good. We considered hospice, but my brother wouldn't sign on to that.
We talked with the NH and came to an agreement that whatever came up, they would treat "in-house". If I recall correctly, they got her through 2 UTIs and at least one bout of pneumonia. Not trips to the ER unless they called us first. I can't give you an exact time line, but I think this palliative care phase lasted about 2 years.
In the end, mom's vascular dementia was clearly advancing and she was losing ground week by week. She fell while being assisted in the bathroom and because there was a head wound and possible fracture, brother agreed to ER. She was in terrible shape upon return, in pain, grimacing horribly and had no way to tell us what was wrong due to now-severe aphasia. We called in hospice at that point.
Riverdale ((((hugs)))) to you and hope your jaw is healing.
Palliative care is therefore treatment aimed at relieving the unpleasant symptoms and effects of disease (pain being the obvious example).
Therapeutic care aims to alter the course of the disease itself, or (ideally) eradicate it altogether. That's the distinction.
I think it might be a function of the strict silos that sometimes seem to crop up in the US healthcare system that hospice in America is becoming associated with no active treatment at all. As far as I'm aware hospice care in the UK doesn't specifically preclude any treatment that a patient chooses to pursue - though I dare say they do discourage patients from pursuing pointless ones.
Riverdale, I'm so sorry for what you and your mother have been going through these last two weeks. Are you happy she is being well cared for now? I hope the NH is being kind to her.
If you feel that things are being kept back from you, even if out of kindness, perhaps the best thing for you to do is ask if it's so?
I am sorry.