My mom who is 90 yo has been in a state of decline for the past 2-3 months. Before she had been able to live by herself but not driving. She now Has become unable to live alone, fix her own meals, had multiple hospitalizations and the last time was sent home on oxygen. She has lung and heart issues, GI and urinary issues and has had personality changes with a lot being really focused inward with obsessive behaviors, extreme anxiety and confusion at times. Because of her decline it was recommended by ones who’d taken care of elderly parents themselves that I need to get palliative/hospice care which I did. All they did was discuss with her goals of care which was to live at home.
Last week she fell out of bed and broke her replaced hip, had surgery and has since been experiencing delirium, confusion and a lot of anxiety. My brother told the surgeon she was FULL CODE status.
She is going to rehab at some point when they get her stabilized with her other issues. I was told to contact the hospitalist to get palliative on board. The hospitalist seemed to wonder why she was on full code and how it should be addressed with PC when they met with my brother and SIL. It was addressed but nothing has changed even with this hip fracture. I believe she needs hospice care but PC said it is not consistent with goals of care so she is ineligible.
I was not there with the meeting with PC but in the notes with PC mom told them she had no heart issues and my brother and SIL indicated the oxygen was for ‘anxiety’ which all is NOT true. She told the surgeon the same thing in preop, that she had no heart or lung issues. I corrected that myself at the time. My brother did not. He only said she was full code status.
My brother and SIL have continuously refused to even discuss future care for her or hospice care and the resources it could provide. The only thing they really want me for is to stay with her so they can have a break. But I get no say in anything else. basically my brother is allowing my mother to tell the drs whatever she wants even if it’s not true and he makes little attempt to correct her. I’ve been feeling he is in denial for a while
Even though I have POA along with my brother ultimately I have no say. Initially I thought PC would help us make some hard but important decisions. I guess I was wrong if they don’t see what I’m seeing and PC is just another set of providers that aren’t really doing anything. So is there a real purpose in this situation to having palliative care at all?
I was co-POA with another family member for my parents. I have no idea why they set it up that way because family member wasn't known for their good decisions or mental stability in the past. I came to believe that FM was mostly like an albatross around my neck and resolved at that time, though I continued being co-POA for my parents until the end, never to be a co-POA again. Perhaps the parents think it's helpful to have two being in charge of their affairs, but it isn't if there are other issues, such as control freaks or mental health issues that parents knew nothing about when they awarded POA.
In a strange twist, I was then appointed POA for same family member who had been my co-POA for parents. I resigned when I realized that their instability was getting worse. In my state, I had to write a letter to my FM stating that I was resigning, have it notarized, and have it delivered by certified mail with return receipt. I was able to handle this myself, or I could have hired a paralegal or lawyer to do it for a small fee. Easy peasy. I'm sure that the procedure where you live would be something similar.
If you resigned co-POA, that would leave your brother (and SIL, though in reality she apparently has no legal say-so regarding your mom) in charge. He's already de facto in charge, it appears. You would then not be having conversations with him about mom's care, which you already believe anyway is going to be totally up to him despite your status as co-POA. You would (frustratingly) be on the sidelines. Which you already are (frustratingly) anyway. Then you'd be able to concentrate on just being mom's daughter.
And if your brother and SIL still want you to babysit mom and take responsibility for getting her to the doctor and hospital, mmmmmm, NO. They don't get to be the boss of you! They can pay a sitter.
It would be worthwhile for you to visit a lawyer (first consultation may be free). Ask what rights you have that may be being violated, and what rights your mom has that may be being violated. This is a murky situation, and I hope you can find peace within it.
Or maybe a bit of "I am the hero riding in" type of man..? I could imagine stating Full Code could feel powerful..
What's driving brother's Full Code stance do you think? Have you asked him? What are HIS reasons?
Lastly, what sort of relationship do you want with your brother & SIL going forward? Deep hurt & rifts can be caused that does not fade after a parent passes.
On palliative care, a Kaiser md visited dad at home regularly. This is where the diagnosis of dementia and Parkinson’s was made. My dad was, however, maintained on his kidney meds. He was stage 4b.
Dad took a downturn about six months later, at which point he transitioned to hospice. His kidney meds were stopped. Though they did continue the Parkinson’s meds, my sister the doc said not to bother. He got a hospital bed, unli,tied diapers, the comfort meds, etc.
I very much dislike two people being POA together. Is one of you primary and one secondary, or do you share equal power? Because in a disagreement such as you are currently embroiled in, it is pretty much not going ANYWHERE no matter what code status or care is chosen.
I am assuming in all of this that 90 year old mom is totally unable to express her own wishes about code? Because, once a 90 year old has explained to her by her MD that a full code will do little to save her life but will almost certainly break every rib she has at the end (I say this as an old retired RN), that 90 year old often opts for a DNR/No Code status.
Really we can't help you with a war of family members in a plan of care. It's sad, but the truth is that palliative care and/or Hospice will do little ultimately but provide a few bed baths, a visit weekly from an RN, a phone call from clergy and social worker, and the "good medications" in the case of Hospice, and access to choice in treatment with palliative, and perhaps better pain relief.
I wish you good luck, but if you and bro are truly BOTH equal POAs here, and you disagree, you're looking in best at mediation in any disagreement. If you're interested in mediation I can give you links if you PM me; if you go to the search bar here at Aging care, to right on the top timeline, you can type in "mediation" and I would bet all the links I have typed in for others will pop up.
Good luck, here, but it is always sad and almost insurmountable when family has two chefs stirring a stew for which they disagree about ingredients.
I do not believe 'mediation' is an option for us as it would likely get ugly and that won't be good for anyone.
Thank you so much for your thoughts and expertise.
Hospice can allow a hospitalization particularly if the reason is not related to the primary reason the person is on Hospice.
Personally I think your brother is doing mom a disservice by allowing her to be a "full code". The possibility that a person of your mom's age and health conditions would survive CPR, intubation and all the rest that goes with the life saving measures that can or will be done are slim. And if she does survive the immediate code the possible injuries resulting from the CPR would be painful and possibly result in pneumonia. (broken ribs and cracked sternum are common and make breathing difficult that is what can lead to pneumonia)
I think without the "full code" status your mom would be eligible for Hospice. I am surprised that the Palliative Team has not discussed this at length. And if they have maybe your brother just does not want to accept the reality of the situation.
Did your mom ever express any thoughts about life sustaining treatments? If so those are the wishes that you should stand by and how your brother should be making decisions. That said there comes a time when tough decisions have to be made that may go against what someone had expressed years ago when they were not in the medical state they are currently in.
As to your question about having Palliative Care. It can either be a stepping stone to Hospice or in some cases an add on to other medical care where the goal is curative. It does not sound like either is an option if your brother (I am assuming he is POA) does not change his mind about the "full code"
And yes, I believe he is doing her a disservice, but he's doing us both a disservice by refusing to talk about the future. The notes indicated she looked at him first for answer, before making that call of full code. He 'coaches' her on a lot of things I've noticed. I'm just trying to be okay with the fact that things will play out as they will, no matter how in denial he is, or how realistic I try to be. It just hurts to see how much is being done, and for what? She had no quality of life before she broke this hip. Thank you for your thoughts.
It seems there are a few issues & I’m not sure I followed correctly, so please correct me.
Mom is 90. Her health has changed & deteriorated these last few months. Currently she has fractured her hip, survived surgery but is suffering post op delirium.
It is not yet clear how things will go.
Bounce Back.. If the delirium lifts, transfer to inpatient rehab may be suggested - with aim go home (with possibly more formal supports).
A Big Move.. If medically stable but still confused, a move to 24/7 care accommodation may become necessary (eg temporary respite care or permanent nursing home).
Comfort Care.. If further overall decline happens, if Mom stops eating & drinking, palliative care may be suggested.
Sometimes families can push for the pathway they want, but Mother Nature may have her own plans. Staying HOPEFUL yet REALISTIC can be a good aim.
Do you want to explain more about why you “have no say”. Is this “no say” specifically regarding your brother? Or “no say” when dealing with medical staff?
If you are POA, MPOA, next of kin or a direct daughter or son, I would expect the medical staff are able to discuss your Mom’s condition with you. So is it that you are not the Medical Decision Maker? Even if not, if there are diagnosed conditions that Mom or brother have not disclosed, I would think these could disclosed by you. The hospital could verify as they need.
Palliative Care is a fantastic service where I live. Aiming for CARE in many areas for those living with terminal illness eg OT, counselling, pain management. I realise the term can mean different things in different areas though.
Who told you to contact the hospitalist? Who gives you other orders? Why do you follow them? Why is your sister-in-law in on meetings along with your brother but you, co-POA, are not? Is she a co-POA too? How do they get to make decisions if you’re a POA and don’t agree? When I was a co-POA, both our signatures had to be on every document. You can refuse to sign, you know.
I'm sorry for this situation, but you can get out of it by resigning POA. The question is, do you want to?
My SIL stands in and does a lot work for him even though he does still stay with her. They switch out. They’ve pretty much taken over her care except when they need me to give them time off. Really feel it’s a control issue. On his part and her part. It’s ok in his/her mind for me to be involved and take her to the hospital or help him take her to Dr visits, just don’t rock the boat by trying to discuss how we intend to keep addressing her issues or voicing my opinion. I realize more than ever I’m spinning my wheels. But feel guilty by not being involved. It’s just a bad situation made worse by family dynamics that have always existed. My mom was living in a dreamworld when she set this up.
What would be the benefit of taking myself off as POA at this point? How would I go about doing that? Mom doesn’t have the brain power or strength to redo her MPOA.