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Good news is, the daughter has come to grips with the fact that her mom is dying. She asked her brother (my DH) his opinion and he told her that they needed to respect the living will - no feeding tube, DNR, etc. She then agreed. We are contacting Hospice today and will proceed. It will be sad to lose her, but also she is a shell of herself, that's not my MIL in that bed - it's what's left of her after this series of strokes ravaged her.
The more interesting news though, in talking with the nurse, she said that though the Living Will is important, the family had the ultimate decision -- YIKES! They would try to steer the family to follow the LW, if they know about it, but can't override the family's decision.
Bottom line - make sure your family (or at a minimum your POA or potential Guardian) are willing to abide by your wishes.
I'm sure "enforcement" of Living Wills vary from facility to facility, but this is how it would be handled at our local hospital. It just underscores what we say on here all the time -- have those talks with your loved ones, find out what their wishes are, make a plan, and make sure everyone knows the plan -- and do it now, while they are able to make these decisions and articulate them.
My friend went through this with a mom who had massive brain damage from the stroke and was never going to recover. She had one brother who needed more time to process and she felt that as long as her mom was kept comfortable (ie unconscious) there was no harm in giving him more time.
But it does seem that the person who is legally allowed to make your decisions gets to make the decisions. The paperwork is just guidance.
Donating organs is similar - you can put it on your driver's license but it's the family who will ultimately decide. In our house, I want to be a donor, Hubby does not. So we joke about -- if you want it your way, you better die second, cause he might not donate my organs and I just might donate his! LOL
Then it may go one way or another. As you have to understand the doctors do not want to deal with hysterical guardians claiming that they are allowing death when they should have/could have treated.
I think that the important thing here is that you make certain Doctor has the Living Will and that you THEN stay well out of it. If the guardian is FIGHTING and feels backed into a corner by you, then he/she will continue to flail madly without thinking on this. They will have an enemy to fight instead of the grief of facing this painful loss. The doctors and social workers and clergy can do much more good than you can.
You understand that this guardianship holds a lot of power. The guardian is free to say "Look, I spoke to her right before this happened and she told me 'I want to make out a new living will because I want to live, and I want everything done; my friend Hulda just had a feeding tube and she was right as rain in weeks'."
Leave it to the doctors and Social Workers and other staff to make the facts clear in a very kind and gentle way. I wish luck to all and and sorry for these circumstances. Hope you will update us.
When my mom was in a nursing home for rehab the social worker approached me about a ‘polst form’ to fill out. I had mom’s living will filled out and didn’t get around to filling out this polst form.
I don’t remember the details. Can you explain the difference between a living will and a polst please? The social worker said the polst was taken more seriously.
Is this a common form that is recognized in elder care?
I feel for the doctors, they get stuck in the middle of trying to do what's best for their patient and appease the family members as well. It's a no-win situation.
In my call to get the update last night, the nurse read from the chart that the daughter said "She doesn't want anyone talking about end of life, none of that!" and I'm picturing that it involved raised voices and a little hysteria already :(
And you are so right about me being the enemy - as an in-law, I'm already a second-class citizen to her. DH will make sure they have the document, and then we will step back (and I'll be two steps behind him even, lol.)
I expect it will be like you suggested, much flailing and fighting - and I understand, it will be coming from a place of fear and pain for my SIL, and I have great compassion for her. Any of us who have lost a parent know how hard that whole situation is, and how it breaks your heart no matter the circumstances.
Thank you for your input, it was really helpful!
My daughter, RN, would not even recommend a feeding tube at this point. Its only prolonging the inevitable and can do more harm then good. Especially if the body is shutting down. I would ask for Hospice at this point. From what you wrote, this child should never have been guardian. She is letting her emotions override common sense.
If the family decides to override her wishes, you may have to live with the consequences of that decision, added expense, knowing you went against her wishes, watching her on a vent and other emotional scars you may acquire. Of course honoring her wishes could also result in "what ifs" by the family. I would want my children to honor my wishes.
I'm headed for a visit in an hour, and I should have some good information from the nurses about MIL's condition and prognosis. From the conversations over the phone, it sounds like the situation is grave.
We would certainly be in favor of feeding tubes, etc. if it is short-term to help her heal and get stronger . . . or maybe even to "buy a little time", giving two out of town grandkids time to get to her bedside for their goodbyes. But she didn't want to get "stuck in a home, on machines" :(
Every time dad was admitted to the hospital the staff asked him about DNR and health care directive. His directive says no DNR but they ask whether he wants recessitation. He would always hem and haw about it; that he wanted recessitation if he could expect to recover fully. The doctors would then say there's no middle ground. If you don't say DNR then you get full recessitation.
In other words, the document is not the final story; not the final word.
It's good to have the document. But people need to be on board with what it says.
Also, the daughter seems to be denying the reality that her mother is dying. She's not ready to let go. That's unfortunate considering her position. Hopefully she will find the strength to let go.
Living wills are not written in stone and can be changed.
When they do it is often not because they think their loved one would be better with the feeding tube, clearly that is not what the doctor is saying. The problem more often than not is that the guardian or power of attorney can not let go of their loved one so they are insisting on the feeding tube. They are making decision based off what they want NOT what is best for their loved one.
I would contact a Elder Law Attorney and talk about challenging the guardianship so that your MIL shes are honored.
I am sorry you are having to go through this, keep us updated on any progress.
SIL is doing really well, she's appreciating these last few days with her mom, to talk to her and just be in her presence -- so the Hospice experience is going to be very good healing for her in helping her say good bye to mom.
Four of the grandkids have made it home to spend some time and say goodbyes -- one has said he prefers not to visit, he wants to remember Gr'ma as he knew her, not like this. And I respect that -- each one will handle it the best they can for themselves.