Ok, where to start? (Sorry, this gets a little long if you can bear with me) I’ll take any advice your experiences have taught you. He is on dialysis, has heart problems, diabetes, and obviously dementia although I don’t believe it’s been officially diagnosed. He lives in CA and I live in WI. Have never been all that close, but do fine with “hi, how are you?” and holiday calls. Has had a 15yr relationship with a woman and most recently living in her home. He does not own one. He only receives SSI, but gets more than the limit for Medicaid. Has been hospitalized multiple times in last few months, is currently in a SNF (for the 2nd time recently). He has rapidly worsening confusion. With this hospitalization is only oriented mostly to person, and occasionally combative. His partner has decided she can no longer care for or “deal” with him at all and wants me to take over everything. They have tried home health care services, but was not enough. He has lost ability to do most ADLs. He has no POA or will or anything. And has some debts I’m told. I am currently acting as his ‘medical spokesperson’ for lack of a better term. I am his only child and there is virtually no other family. I live on SSDI with my own long term health issues. I am planning on talking to either the SW from his dialysis center or the SNF on Monday and his nephrologist. We have been discussing over this time frame if he was getting nearer to needing to stop dialysis and enter a hospice facility. I believe we are probably there from a medical and quality of life point of view. I realize from reading posts here that I probably need to come up with the money for an elder care lawyer. Are there majors pitfalls to this situation I should especially watch out for? I know not to take financial responsibility for anything but how do I guarantee that? I also don’t want it to sound like finances are the only issue here. I do have a nursing background so I’m more comfortable there. And we believed we said our ‘goodbyes’ when I managed to visit in May for his 80th when he was only having short periods of confusion. His overall health was also not to this point. He is so weak. I know he didn’t want to live like this. That much we had talked about. We had tried to get him to sign even just an advanced directive and he kept saying he would, but it apparently was never followed through on. I am planning on trying to go out there if/when dialysis is stopped and he goes to a hospice center so that someone will be there with him at the end. Will he qualify for one? He has no other place to go. His ‘partner’ does not want to be there for any of it. (Which I understand, boundaries, but…) I have none of his actual financial information besides what the partner has told me, though she would provide what she could. All she’s saying is “he was bad at keeping records.” Which is most likely true. Will I need to have him made a ward of the state? Would I then be allowed to visit in that case? Could the necessary decision to stop dialysis be made if his drs agree that’s the best? Ok, now I’m just rambling. It’s just kind of overwhelming seeing a lot of it has just happened in the last few days. Thanks for any input.
Good luck.
Working face to face with the snf and with hospice plus spending time with him is going to take more than 48 hours. A week would be more realistic. If the goal is for dad to decline dialysis to accept hospice, you should research the top rated hospices on Yelp so he doesn’t get stuck with Vitas. Sounds like the snf will let you pick.And I guarantee that the more of that team that have personally had a good discussion with, the more they will personalize their service both for you and him.
You are a family contact, but not super close. A few calls & cards.. Part of the social background to each other's life.
I see 3 issues here.
#1. "He has no POA or will or anything".
#2. You have no authority to act on his behalf.
#3. His partner is not not coping.
Re #1. Bio Dad can change this (if able to). *This is HIS issue (although too late now).
Re #3. Partner hopefully can speak up to the medical team & arrange support for herself/both.
*This is HER issue.
Now regarding #2. THIS is the only thing you can control.
.You don't have to step in because he sired you.
.You don't have to step in because his partner stepped out.
.You don't have to step in because there are no other relatives, friends or people this man trusted to assign a POA to.
You step in IF you want.
Based on your thoughts, your feelings, your values.
Whether you step in to help, IF you do, HOW you do - is up to YOU.
Options may include;
Someone who sits vigil bedside until the very end.
Someone who makes phone calls to advocate for his care.
Someone listed to be informed of he improves/declines/is transferred to another setting.
Or, as you did previously, someone who makes a few friendly calls & sends cards.
Think carefully.
“You step in IF you want.
Based on your thoughts, your feelings, your values.
Whether you step in to help, IF you do, HOW you do - is up to YOU.”
This helps because that’s exactly where I’m at. I’m going to get a little more information from Drs and SWs to help me decide just that.
Your examples were also helpful.
His GF can tell the hospital that he is an unsafe discharge.
Then it’ll just be the simple matter of getting my heart and gut to join my brain that I’m doing my best no matter if there’s some “I wish…” left over to deal with.
thxs
But California, from what I can see, actually has a very robust system in which the medical team has a priority list, so even there’s no POA in advance, or guardian, then there is a legal provision to assign decision-making power to another person. See below. (the assignee would have to be in agreement, of course.)
I don’t live in California, but it sounds like that’s what’s going on here – at the moment, the OP actually has medical decision making power. I’m not saying the OPhas to keep it, he, or she can always decline. But it sounds like right now the OP has an opinion “he wouldn’t want to live like this “and would be perfectly justified in withdrawing dialysis on his behalf.
State appointed guardians tend to be very conservative and don’t often do that, so that would be perfectly appropriate to handover to a state appointed medical guardian, I would not be surprised if they continued dialysis.
As for transition to hospice, is he in a facility right now? Many have affiliations with hospice and there’s no need to move.
https://californiahealthline.org/news/article/california-requires-hospitals-consult-next-of-kin/amp/
https://www.caltcm.org/index.php?option=com_dailyplanetblog&view=entry&year=2023&month=02&day=14&id=194:new-ca-law-addresses-surrogate-medical-decision-making#:~:text=A%20surrogate%20may%20be%20chosen,adult%20sibling%20of%20the%20patient.
I hope this isn’t wishful thinking, but for his sake I’m hoping that there may a narrow window of being able to work with his dialysis team that stopping treatment is in his best interest and go from there. It’s really going to depend on if they have that same opinion and what it would take to make it happen.
He is at a SNF currently, but only currently on a short-term basis. Because he only has SCAN (a CA Medicare based Advantage plan) and really needs to have Medi-cal (CA Medicaid). Getting that approved is going to be quite a process and I don’t know if either I or the ex-gf has the needed info for it. Will be discussing with SWs.
You guys are all correct and I appreciate your advice about not getting in over my head. If this specific plan doesn’t work I’m realizing I’ll most likely need to make that difficult decision to step away.
Thank you
There is utterly NO REASON for you to do so.
I could not agree more with withdrawing dialysis, but you are not POA and cannot be made POA for someone now that he has dementia.
You need to contact discharge planning now.
THEY need to contact his partner who must reassure them she cannot care for him.
Then they must do discharge planning, and that will likely mean, with someone who clearly seen now as having dementia, he will need a guardian.
Tell them to get a state appointed guardian.
There is no way you can handle this by phone with an elder law attorney charging you 700.00 an hour for someone who is basically debt ridden and indigent. NONE OF THIS IS OR SHOULD BE YOUR PROBLEM.
So next call, tell all involved (MD, Social Worker and others)
1. that you are simple an estranged daughter of a now demented Dad. That you have no right and no intention of making his decisions. That you agree with them that further treatment now is pointless but that you cannot make that decision.
2. Let them know you are NOT the guardian and you do not WANT TO BE and cannot be due to your own health and welfare.
TRUST ME:
If you do not do this some well meaning social worker who wants this off her hands is going to make you an Emergency Temporary Guardian.
THAT IS A HUGE JOB. It is one that cannot be done from half the country away. It is one that would need a cooperative Dad who agrees and a in facility Hospice (which no longer exists in any numbers).
Sorry for it all but DO NOT DO THIS TO YOURSELF. If you were DEAD, then your father would have a state appointed guardian. Let them do that for him now.
which sounds like he may also need to be approved for Medicaid, which is where it may all fall apart because you’re right I can’t handle all of that for many reasons.
thxs again. You’ve helped clarify stuff for me.
Parents had their entire lives make arrangements even securing life insurance policies for their deaths. Adult kids get pulled into this drama all the time.
Also, it is difficult to manage someone's affairs in another state. Let him become a ward of that state.
His guardian would communicate with us, asking about his preferences in order to make him comfortable (he had Parkinsons and Lewy Body dementia). The guardian got him into a facility and we were able to visit him as much as we wished. The guardian even relocated him from a facility 1-hour away to accommodate us bringing my MIL to visit him. He was on Medicaid, so was in a county-run facility.
Right now you are in no way responsible for any of his debt unless you co-signed anything with him. My SFIL had tens of thousands in cc debt, was 3 years behind in paying property taxes and had a house in foreclosure. Don't worry about his debt. His wife walked away from all of it and so did us adult children. Maybe your Dad's partner needs to worry if she co-signed anything with him, like a rental lease, car lease or loan, cc, etc. If they had a joint bank account then most likely all that money will become hers (and this may differ by bank and state). The way you guarantee to not become responsible is to never sign anything on his behalf going forward.
If he is on Medicaid (like you wrote in your post) then he will have a caseworker. Call the number on the letters he has been receiving from them (and reference his case #) and ask to have a discussion with a social worker about a court-assigned guardian for him. It may take a while for this process to play out.
If he is on Medicaid and already in a facility that accepts Medicaid (and has open beds) then he cannot be kicked out. Really the only practical thing you can do is to go there and work to get him a legal guardian and advocate for his medical care/hospice until he gets a guardian.
It may be a good idea to get together with his girlfriend to get an idea on anything else of his at their shared home. I wish you success in your efforts and peace in your heart that you are doing your best for him in spite of him not doing the best for himself.
No, I have nothing to do with his finances and will not/have not signed anything.
That’s one of the difficult, complicating issues. He doesn’t currently have Medicaid. Supposedly his SSI was over the qualifying level. One of the SW’s said in this situation he would probably qualify for an exemption. But as you said, that is a whole process in it’s self. One I know I don’t have the information for. And the ex-gf is vague about knowing or wanting to deal with. Which leads us back to guardianship and that whole process.
Thank you for not only the information, but for your kindness.