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dnajaras Asked May 2023

Does anyone have any advice for health care proxy/caregiver's burnout?

My mother's health care proxy was invoked by a doctor on a hospital unit she is at (I am not sure if this is still considered temporary or permanent) about one week ago. Even prior to it invoked, I have been very involved with my mother's care from 600 miles away. The discharge planner left a message about 430 pm yesterday that a possible short term rehab unit bed popped up and things would move quickly.


I had a doctor’s appointment today which I knew would involve a lot of travel. I wrote an email to my family and the center that I might not be as available today and if they needed could reach out to the alternate health care proxy to sign some of the admission forms.


The discharge planner left a message stating that myself as the health care proxy had to sign the forms not the alternative. Admissions from the short-term rehab facility called me as I was stuck in traffic and told me the alternative stated she was not comfortable making health care choices for my mother (is not this too late for her to state this?). Now it appears the alternative may have changed her mind. It does not help that we are not close at all and have had an estranged relationship for over 12 years just basically to growing apart, etc.


The admissions agent at the rehab wants one of us to make a statement that we are the acting health care proxy and will be available to make decisions. This comes across as too authoritative as is not this already implied in the signed health care proxy form? Is this normal practice for rehab places or just this one? If just this one, I am not comfortable having my mother admitted to place with such an authoritarian culture.


To me I think the rehab center is CYAing. The hospital unit where my mother has been staying only gave us about 60 minute confirmation prior of a family meeting. Their last minute expectations of available family members seems unrealistic and too demanding especially when most people have full time jobs these days.


I have reached out to an attorney but may not hear back till early next week due to the holiday.

NeedHelpWithMom Jun 2023
I wouldn’t feel like the rehab has a CYA attitude. Your mom is entering a facility.

When my mom was going to be transferred from the hospital into rehab, I was told to go to the rehab facility and fill out paperwork the day before.

It’s necessary paperwork and common procedure for a new patient.

I can see how this is stressful for you since they need you to do these things as they occur.

Do you want to continue to be the primary contact person since you live so far away? It may be more practical for your mother if you spoke with the alternate person and ask her if she would be willing to take over.

Put your personal feelings aside and do what you feel is best for all of you. It doesn’t have to be awkward to stop being your mother’s primary contact. Just state the facts concerning your circumstances and how it isn’t practical for anyone.

Best wishes in resolving this issue. I hope that you were able to speak with them and settle this issue.

Please know that nearing the end of your mother’s rehab stay, the facility will require a meeting to discuss her progress. I suppose that this will be conducted over the phone since you live far away.

Llamalover47 Jun 2023
dnajaras: Perhaps you will want to retain an elder law attorney.

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lifeisgood720 Jun 2023
Gotta agree with MD1748 and JoAnn29. Welcome to elder care. When mom's in the hospital and you are not exactly sure why and you can't stop your life to get to her bedside, it's going to be extremely difficult to make decisions as you've found out.
They want you to sign papers upon admission because a healthcare POA can be rescinded at any time. It may be CYA, but it's reasonable in today's world of lawsuits. I suspect this is a wrong portrayal of your goals, but it seems you were more interested in talking to an attorney than in contacting the hospital social worker and/or discharge worker.
cmotta Jun 2023
help! what does CYA stand for? Thanks!
Carol
JoAnn29 Jun 2023
There is a later post where OP was going to see a Lawyer on Tues the 30th, Has not updated us on what they found out.

janicemeyer18 Jun 2023
Confer with Elder Law Attorney. In meantime, one can usually offer to
" be present" by video conference / phone at last minute meeting needs.
And paperwork for signing has at times been scanned or faxed or in some way electronically made available to the decision makers for signing. Revisiting previous decisions about POA and other needed decision makers and willingness/ availability is not unusual. Seek Elder Law Attorney directions.

KNance72 Jun 2023
Usually the person physically closest to the incapacitated person is healthcare proxy trying to make medical decisions from far away is difficult - the medical staff likes to see a human being in physical
form . Anyone can make a phone call ☎️
NeedHelpWithMom Jun 2023
I agree. It’s more difficult for children who live far away from their parents.
JoAnn29 May 2023
You have asked several questions concerning your healthcare proxy. I think you live too far away for this responsibility. These facilities need someone who can be called at the spir of the moment. You may need to step down and let the alternate take over for signing purposes. You should basically be going by Moms wishes. Tell the alternate that you can make the decisions they will just be the person who is there.

You may want to talk to am elder lawyer to see if an alternate can step in for you when u are not available. If so, have him write a letter saying that when you are not available, the law allows the alternate to step in. You need to get this straightened out or the State could take over Moms care.

dnajaras May 2023
Wow it is so cool how your three siblings shared the health care proxy roles. Thanks so much for sharing your experience that the health care team members may call at the worse possible time. I find many call and demand instant availabilty though in today's modern world this may not be possible. Thanks so much for the hints and learning to practice "I will call you back in one hour."

In terms of paperwork for billing and financing that would go to the sibling who is in charge of monitoring her finances now that the health care proxy has been evoked.

Ideally in the future I think it would be best to ask any facility to send the admitting forms in advance in possible to allow ample time to review. I find many want a quick turnaround but anthing that involves my signature I need to thoroughly read and not quickly because I am at work.

I will calculate 1-2 hours in my weekly schedule for phone calls.

CTTN55 May 2023
Barb writes: "They are turning to the person whose responsibility it is to do that signing, whether in person or remotely."

And keep that "remotely" option in mind. While I and my brothers were all HCPOAs for my mother, 2 of my 3 brothers were the POAs (could act independently; 1 brother took the lead and the other acted as backup only.

When my mother was switching from rehab to LTC in the NH where she had rehab, the NH would bug me about signatures. I shrugged and simply said I didn't have the power to sign. It had to be done remotely (and was) by my brother.

dnajaras May 2023
thanks. I would think however that the health care proxy form would already state this.

BarbBrooklyn May 2023
I don't see why you find the rehab's position "authoritarian".

They are admitting a patient who can't make decisions for herself, or sign paperwork stating that she will pay her bill.

They are turning to the person whose responsibility it is to do that signing, whether in person or remotely.

I think you need to call the rehab folks and explain that you are 600 miles away and frequently in transit due to the nature of your job; ask them how they've solved this problem in the past when HCP's aren't able to be physically at their site.

Having an ill, elderly parent is extremely stressful. I wasn't POA for my mom (brother was) but we were all 3:of us HCPs. In the last 6 years of my mom's life, I probably spent an hour or two each week on the phone with doctors, dentists, therapists and administrators.

These calls ALWAYS come at the worst possible moment. After trying to get hold of her dentist for a month, he finally called as my husband was being loaded into an ambulance with a life threatening problem.

You are at the beginning of what may be a long slog. You learn to prioritize, to juggle and to multi-task. You must also learn to say "I'm going to need to call you back in half an hour".

A true story about juggling a loved one's healthcare and job responsibilities -- Several years ago, the president of my college was on the phone with her college-aged son's surgeon; the young man had had emergency surgery the night before. Her secretary rang through and said she had an important call. College president says "I'm talking to my son's surgeon"
Secretary says "but it's the President".

Barack Obama was on the other line, calling to accept an invitation to speak at Commencement.

College president got on the line and said "I am delighted to hear from you sir, but I'm on the line with my son's doctor". The president assured her that parenthood trumped his RSVP and asked her to call back when convenient.

I learned a lot from reading that story in my alumna magazine.

Your health, of necessity, comes first. If you are the only voice your mom has, then you might need to juggle things at your job a bit.

I'd also in touch with the alternate and figure out how you are going handle things when you need to be away.

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