Apologies for the long read but this is a bit complex.
Everyone describes my 92-year-old mother as a wonder. She shops online, does Tai Chi, downloads e-books and can discuss current politics. She lives in an independent villa in a retirement village. However she is also reclusive and prone to anxiety.
About 5 weeks ago she fell and broke her pelvis. In the medical ward, she became agitated when the medical staff asked if they could locate her advanced care directive (she has always refused to talk about this). Mum raised this with me the next day and started talking about how doctors and family use directives to collude to kill old people and gave an example of something she believed had occurred with a distant family member (no evidence). I was extremely distressed but thought this conversation might be due to shock etc. I am her POA for finance and care and welfare - there is no other family except for two grandchildren living overseas.
To put this in context, I left home at the age of 16, have never asked or taken money from my parents and I am financially stable. My mother lives 2 hours drive away (does not want to move closer) and I have spent lots of money and time driving and organising her finances.
I approached our family lawyers about the ethics of continuing as her POA and they felt it was important she wrote something down about her wishes and they also suggested a second POA might make her feel more secure. They said if I withdrew, there was a risk she would not appoint anyone.
Mum is now recovering in a rehabilitation hospital for older people and is preparing to go home. As she seemed quite relaxed, I raised this issue again and asked her if she felt I would behave like this family member who "had killed his mother." She nodded and said - slightly sarcastically - that I would behave according to my world view. I felt like bursting into tears but reminded myself I am her POA and told her that my world view should not have anything to do with it - my role was to enact her wishes if she was not able to do that herself. I told her I could no longer act as her POA for health without any direction. She said she would look at the care papers and I suggested she could just write something herself if she believed the template was coercive. She has not done so.
In the meantime the rehabilitation hospital has been assessing mum thoroughly over the past 4 weeks. They say there is some evidence of cognitive decline but that is age-related only (not dementia). They agree she suffers from anxiety. What has really shocked me is they have told me that what she says to me and how she acts with me is completely different to how she acts and talks to other people. They have said I need to protect myself (in those words) and have extremely good boundaries. They said she does not see people as people - especially me.
I guess I always knew this but refused to accept it in my heart. However, I do not feel I can abandon my mother now she is 92-years-old. It feels a little late to have come to this understanding and there is a duty of care. This situation is also complicated by the fact that one of our young adult sons died tragically recently, my husband has been diagnosed with Parkinson's and was operated on yesterday for melanoma - so my resilience is really low. Mum knew about yesterday's operation and that it was also the anniversary of our son's death but rang at 4.30pm with a list of demands that needed to happen by 5pm. I checked with the hospital - those were not real.
Any advice about the POA and Advanced Care Directive would be appreciated.
What a lot you have on your plate.
I'm so sorry for the loss of your son. That must be devestating.
I would ask the hospital what happens if you step away as POA. For a lot of reasons, that sounds like the best idea.
Might I ask, if you were to choose to step away as POA for Health who would take over that position? It seems like you are comfortable now with handling the financial POA? The first year of that is the hardest, and then it becomes somewhat routine.
The questions are do you WANT to give up the POA for either Health or Financial given the fact your Mom will not or cannot participate in these decisions? Do know that EVERYONE will now ask for the Advance Directive. Feel free to tell them that your Mother won't discuss her wishes for end of life care. Not with you or with them. Nature will then take its course and you will make decisions as you NEED to make them, but NOT in advance.
If you are assured that her safety and reasonable peace, comfort and care are being addressed, you are doing all you can do, and under the circumstances, MORE than enough.
Take good care of yourself and your loved ones. You have my sincere sympathy, and also my respect.
In other words, if you fall and knock yourself out, it doesn't mean that medical professionals shouldn't do what's needed to help you recover. It means if you accidentally decapitate yourself, they won't plug you in to keep you going until your heart wears out. (I know, terrible example, but I hope it's clear that one issue is fixable and the other is not.)
My parents' directives had multiple scenarios, not just "do nothing" or "do everything" to keep them alive. A good attorney will put together a more detailed directive, but ultimately it's up to the POA or next of kin to make the decision when she is no longer capable.
Except it doesn't work that way.
DH doesn't care one way or another if she leaves him anything (and it's likely that she won't) but leaving him with the mess of a intestate situation--he'd talk till he was blue in the face and all she would get out of these 'fights' was that she didn't want ME to get anything.
That hurt, so, being a little snarky, I said to her "You know what WILL happen when you die? The STATE will appoint a total stranger to lock your house and come over at their discretion and go through your stuff and value it and sell it and whatever is left after their fees, your kids will get." She was shocked. "They'll go through my underwear?" "Yes, ma'am, they will. And if you don't write down somewhere YOUR wishes, you are handing your kids a hot mess."
(Of course she didn't believe me, so talked to all her neighbors and yep, what I told her was pretty close to how it would roll out.) She had DH take her to a lawyer, pronto.
As far as EOL wishes, she did not make any decisions on those. I don't think she ever will. That's one that the 'kids' will just have to make on their own.
I would allow her to be in control. What else can you do?
If your Mom chooses not to have an advanced directive, then any decisions concerning her health, if she is not able to voice them, will be up to you as her representative. You will base your decisions on what you feel she would want or on the information you are given. DNRs come into effect only if the person is terminal. Just means no life saving measures will be taken on someone who is dying. You really don't want CPR done on someone elderly. It breaks bones.
I would not give up POAs at this point. Without them, you run the risk of someone else making life and death decisions for your Mom. You may want to tell her that, an advanced directive is for her to write down her wishes and Medical staff need to abide by her wishes. If she does not do this, than a stranger could be making her decisions for her.
Maybe she'll trust this type of format to make her decisions. I just learned about this type of service, as I'm working on a something similar for a new client of mine. You could ask your mom's doctor if they provide health care directive guidance. I wish you success...it's hard, I know.
So I too will be guided by Doctors at the time should the need arise.
I was with my dad repeatedly at his hospitalizations and each time the subject of advance directives came up the hospital wanted a new form filled out, insisted it had to be done again at each visit. My dad’s longtime doctor told us that we shouldn’t bother with anything advance directive because “there is no way to plan for every possible variable of what can happen” We saw this play out with my mom, her medical emergency and the aftermath just wasn’t something that could have been covered in a document, it had to be decided piece by piece in the moment. My dad always stated to us and all medical professionals that he “didn’t want anyone pounding on my chest” but there are endless possibilities of what you can be faced with beyond that. Just know that you can be mom’s POA and when and if the time arrives that you have to make decisions on her behalf you’ll do so, based on a combination of the medical advice you’re being given and your best guess on what she might want. Nothing about this is exact, even if she was willing to discuss it
Now that mom is in rehab, is there a way to transfer her closer to you? This would be the opportune time to do it and let her know she needs to do more work to get out. Then have another medically appropriate facility in mind to move her to when out of rehab. Maybe she gets well enough for another retirement type facility and maybe she needs more attention - which could be explained to her on why she can't go back to where she came from.
Without an advanced directive, all efforts to extend her life will be used in an emergency. Nothing will be withheld in an emergency. Nothing will be withheld from your mother afterwards - except by the expressed statements of the person holding the medical POA - which should be you.
Without a medical or financial POA, you can not do "business" on your mother's behalf: take care of finances, make medical decisions, or even see her medical records. POAs only go into effect when a person is unable to make decisions for himself/herself: dementia, stroke, coma... For the sake of caring your mom who has cognitive issues, please make sure you have those POAs.
It took me several years to convince my parents to do all that kind of paperwork. I finally told them if they didn’t then the doctors would make all the decisions for them. That seemed to work.