Parents caring for the parent support thread (Part 1)

Parent Cafe
7441

Food for thought, @rosered55 . Thanks for the link.

@oldmom4896 That’s a sobering piece. We should all have legal arrangements for our care once we are unable to make decisions for ourselves. But IMO they can give a false sense of security, and the more detailed they are, the greater the peril. My parents laid out in their Advance Directives the circumstances under which they wanted the plug to be pulled, IIRC two weeks in a persistent vegetative state, and a doctor saying they wouldn’t come out of it. The problem was, that wasn’t Dad’s situation at the point that I began to re-think the “keep alive at all costs” idea. He had c.diff, renal failure, episodic respiratory failure, and brain damage from respiratory failure (on top of dementia). But no vegetative state. Plus he wasn’t on any machine, so there was no plug to pull. The question was, rather, should we stop treatment for the c diff? But that question isn’t covered in the document, even though it was clear to me and to his doctors that it was time to let him go. Luckily, Dad named me as his health care agent, and over a period of a month, I was able to convince my brothers that it was time to stop trying to preserve a life that was ready to end.

That month while my brothers accepted that it was time to stop treatment was absolutely hellish for both of my parents, and for me. Patients and families often don’t have any idea of the real-life ramifications of their wishes. “Never put me in a home” or “Keep me alive for 2 weeks” sounds well and good when you’re healthy and sitting in a lawyer’s office. I’m sure what Mom and Dad envisioned was 2 weeks on comfortable life support, then pulling the plug, followed by a quick and serene death – or 1 week, 6 days on comfortable life support, followed by a full recovery and return to their previous life. Maybe it happens that way sometimes, but it could also very well be that neither the 2 weeks nor the death would be quick, painless, serene, or any other good thing. And there’s just no way at all that an 80-something is going to come back from a coma and go back to their life, and no one is doing themselves or their family a favor by imagining that it’s possible.

We all have an understandable desire to control what happens to us when we’re old and feeble and demented, and certainly no one wants to end their days in a nursing home. But it’s completely impossible to anticipate all the things that might go wrong with our bodies and minds, what treatments may or may not be available and appropriate and effective, what kind of care we might need and what options there might be for care. If nothing else, we need to think about the position we’re putting our children in, because it is unknowable how we might be tying their hands, and what kind of hell we might be putting them through someday. The best thing for our kids, and probably for us, is to name a proxy we trust, and then let that person deal with the complexities when the time comes.

The comments in the piece were also good. Several commenters pointed out that the authors, instead of sending the patient to live out her life in skilled nursing, could have and should have talked to the kids about setting up in-home hospice. That would have allowed the kids to honor their mom’s wishes, while also getting her professional care.

7442

@LasMa, great post. I agree. My parents did POAs years ago. The documents weren’t very specific, which I think is a good thing. During my dad’s last month of life (he had a massive stroke and died one month later), all sorts of decisions needed to be made, too many to have made provisions for all of them in the POA document. My mom was my dad’s agent, so she had the final say on all the decisions, once my dad was no longer competent to decide on his own. But my siblings and I all contributed to the decision-making, by doing research, offering facts and opinions to our mom, and supporting her through the process.

7443

" Another end-of-life-planning topic: if a person wants to die at home, does that mean he or she does not want 911 to be called if something happens when he or she is at home? "

With my mom, it was clear to my dad that 911 was not necessary or wanted. But she basically starved to death, so it’s not like anything could have been done (she didn’t want a feeding tube etc.) by paramedics.

“wanting to die at home” can mean a lot of things, and really depends on the living will / advanced directive.

I found this website (I apologize if someone posted it already):
http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289

The one for my state seems quite complete.

7444

A question on medical POA, any advice would be appreciated!

My father is relatively lucid most of the time, but is forgetting stuff like getting referrals and so on. Can I have his medical POA while he is still competent, so I can act as he does in cases like getting referrals and so on?

Or is the medical POA only for someone who can’t do things on their own at all?

Do I want durable medical POA, even though he can do some things himself?

For example, lately:

  • I make most of his doctor appointments, because I am the only one driving him to them. He only goes to his GP for an annual physical on his own now, I drive him to all other appointments (anything more than 10 minutes away and any specialist)
  • he has slipped on getting referrals, so I got his last referrals without having any paperwork to be allowed to do so
  • he has owed money because he hasn’t gotten referrals, and argued that he “never needed referrals before” yet his insurance card say HMO on it

I also want to call his health insurance company and get more details on his plan, and alternative plans.

And another question - I assume that if I had medical POA, they would talk to me about billing issues, even though my brother would have financial POA?

7445

I’m wondering if, instead of activating the health-care power of attorney (which in my state, at least, requires the person whose POA it is to be found to have incapacity by two physicians or one physician and one psychologist; that is, rightly, a high barrier to get over), you could ask your father to sign a release allowing you to receive information about his health care and to assist with transactions.

7446

rhandco- with the important qualifiers that I am not an attorney and that procedures may vary by state and specific medical providers, I offer how my parents and I handled PoAs and health care proxies. Father has severe memory loss and mother, now deceased, had periods of time where her health precluded pragmatic attention to all logistics. I found I had no trouble using a PoA or health care proxy in a fluid way; also had releases of information signed at all medical offices.

If my parents were able to weigh in with needs or preferences, I would execute things they preferred not to handle, as well as those that were past their capacity.We talked about what would be useful and save them effort. Going to medical appointments and having a PoA and health care proxy on file in each office did not preclude my parents from having a say, yet helped ensure a collaborative process and allowed for assistance. The Drs saw me help my parents, knew that they wanted me involved and that I had the legal authority if they were not satisfied that the elders were able to give informed consent at the moment. For a very long time nothing was formally activated, it was just pragmatic cooperation, although having legal papers was what allowed providers/financial offices to speak with me. My father’s health care proxy was activated when while suffering from moderate memory loss, he had a cancer diagnosis and could not remember the details of his diagnosis, therefore Dr. designated me to navigate the treatment options. I had copies of all legal paperwork at their assisted living, all hospitals they received care at, and all medical offices.

Best with this. What is needed is often a moving target.

7447

I saw “Still Alice” on the plane ride home. It was poignant and a so sad; very well .done. It reminds me of my folks and I think it scares them that they’re both getting increasingly forgetful and sometimes confused.

7448

I have Medical Power of Attorney documents for both my parents that were written when we set up the durable power of attorney (is there something called durable medical power of attorney?). In my case, the papers are on file with the primary care and they are aware and keep me informed. But, despite the primary care being part of a larger university system my parent’s use for their medical care, they don’t seem to be “on file” in that larger system. I have to show them to each specialist they go see which is laborious for me and the office staffs. What has worked better, is establishing a health care proxy for that medical system. It allows me access to the electronic patient “my chart” portals and includes billing as well as appointments, tests, and correspondence with the health care provider. It does not preclude them from making their own decisions. If there is a decision I need to help them make, I will make sure I am involved. Since I am informed about everything that happens, I don’t feel I need to go to every appointment.

It is not always easy to set up. I remember it took several phone calls, faxing to the number on the form which really wasn’t the right number, there is a secret fax number, faxing to the right number. It is best to set up now before there is an emergency. My parent’s will sign just about anything I ask them to because they trust me. It would be much harder with an unwilling elder.

7449

A little funny story. My mom has been on the rehab floor of her ccrc for months now. None of us could understand why they were allowing her to stay there and not charge her. I called the social worker to make sure. She would leave for hours a day, to lunch, shopping, etc with family and friends. She likes the staff, and honestly likes to be waited on. I kept saying if she can go to lunch, movies and shopping why does she need that? But she is anxious and depressed and has never been able to entertain herself.

Yesterday she walked down to the lobby, the facility has a free driving service, a driver in a towncar who will take residents anywhere in town. She had him take her to get her hair done and to lunch. She didn’t sign out which then alerted the staff to her whereabouts. The social worker found out mom left on her own, by herself and her adventures. She finally woke up and said, if she has the wherewithal to do that alone, she doesn’t need to be on the floor. So she is getting kicked back to her apartment today. Mom is going to have to be pried out of there, but the social worker said exactly the right thing. You can stay, but you will have to pay.

7450

http://www.americanbar.org/publications/bifocal/vol_37/issue_1_october2015/myths_and_facts_advance_directives.html
This article is written by a lawyer who I consider one of the premier experts on advance directives. He understands not only the law but the realities of making health care decisions.

7451

Fantastic link, @rosered55. It’s all very well talking about what theoretically will happen, but that link says what will actually happen, and what to do to make the health care decisions you want happen.

7452

Yes, great link. I think what I understand is that my dad can file an advanced directive with me as his health care proxy, and that gives me a legal right to make health care decisions for him and have full access to his medical records, but as long as he is competent, he can override my decision.

Another question: is there any reason to not just go to my bank and get the notary to witness the advanced directive being signed, with a witness present other than me, and then file the paperwork at home and bring with me to all his doctors? The lawyer he has was not helpful at all regarding this process, and I think paying him just to witness and sign off on the advanced directive seems dumb and a waste of money.

(any good eldercare lawyers in NJ? is there an elder care law association?)

Thanks to all for the advice, it is well appreciated!

7453

Here’s a link for the Elder and Disability Law Section of the New Jersey State Bar Association:
http://community.njsba.com/elderanddisabilitylawsection/home?ssopc=1

7454

FWIW, medical centers have advanced care directives you can fill in the blanks and sign with witnesses, and notary (where needed). I think it’s a good idea to iluse the form of the med center mist likely to be providing care and have the patient talk with his/her providers about wishes so everyone’s on the same page while folks are lucid. You’re right that most banks and other places have notaries available for free (or slight charge). Main thing IMHO is just have the conversation and get completed paperwork done.

7455

@rhandco there is no reason not to use the bank, and in fact if you haven’t already then ask them to give you THEIR POA form to sign. Banks sometimes get very picky about having their own form and don’t accept ones from lawyers (in violation of law, but they don’t care). My Mom’s bank (BOA) accepted her handwritten scrawl saying I had POA for her mortgage because she did it in front of the banker. To me the letter and herself looked incompetent to sign ANYTHING. Another reason I got the guardianship because she is so agreeable.

7456

Agree that EACH financial institution can require that you use ONLY THEIR FORM. It’s best to use their form to be sure you won’t have hassles later when the person granting you power may become unable to grant authority due to physical or mental issues. It’s best to check with EACH institution which holds assets and be sure the proper paperwork is completed to minimize grief about these issues in the future.

7457

eyemamon, I love your story about your mother. All the extra attention and freedom must have been quite a treat for her, I’m glad she made the most of it.

7458

Chase is one business that does not recognize a legal POA and wants their form used only.

7459

Very few financial institutions accept a POA other than their own, in my experience with my mom, my dad, and my MIL. And, quite a few places decide that even if it is on the correct form, it is invalid if it is >x years old, where x might be 2, 3, or 5 years old.

Honestly, it was quite a bit easier to just make sure I had the computer access to the accounts, and to do things via computer as if I were the account holder. No muss, little fuss…and a perfectly legal POA waiting at home in case I was questioned. The only times I ever had trouble were when I went in or called and I identified myself as the POA. I wouldn’t do that with SS or Medicare, but with everybody else…“Don’t ask, Don’t tell, Just Pretend,” seems to be a good strategy for a lot of this stuff.

(And one of the weirdly hardest to deal with? Time Warner Cable.)

7460

So - multiple children and eldest will have financial POA and youngest (me) will have medical POA. Financial POA will not “start” and don’t feel like discussing with my brother some of the extant financial issues (minor-ish - see previous post on me giving my dad gift limit for this year, but other things are like a handful of less than $100 unpaid medical bills that I can help him sort out). I can have financial control to the extent I tell my dad what to pay and when to pay it for medical purposes.

Would there be a huge reason for me to insist on financial POA as well? Will it complicate matters if one sibling has POA for dad, and one has medical POA for dad? I don’t think my eldest brother would screw me or my dad over, I think it is more important my other siblings stay out of it (sigh).

(And am I being paranoid that my eldest brother had two failed businesses (not with my dad), even though he is now employed in a steady job with benefits and decent pay? He does not have children in college any more, and his wife works, and they are not in money trouble that I know of right now. Does that even matter when considering financial POA?)