Serious request for advice

Danhedonia

Noted duckfat enthusiast
So, on a rampage today, and thought I'd quit sidestepping the real issue and ask for advice. There are so many good people here, maybe someone can help me figure out what to do.

Scenario: mother is dying, 2,200 miles away. Save the kleenex - she's been at the dying part since December, 2011. You read that correctly. Since then, she's logged over a year in ICU's/CCU's, and about 50% of the total time in a wide variety of hospitals, LTACs, and rehabs.

Here's my problem: Each time she is hospitalized, I am called - and called .... and called .... and called ... - by hospital staff. I am her health care proxy, and there are times it's super-important I answer the call. Also, one of these days, she will die, and so I answer every call from Massachusetts numbers 'just in case.'

The thing is, it's usually a case worker or social worker, having conversations that are enormous wastes of time. (I wont' bore you with why unless you ask). And even though I tell them a few specific windows when I can call - and text and email those times to them, so they have them on their phones - they just don't respect boundaries.

They call during my teaching of class. They call before 6am, even though they know the time difference (I'm in Mountain time).

In fact, last fall, I got so frustrated that I counted. Between August and December of 2016, I got over 200 inbound phone calls from hospital staff; three or four were from physicians. Probably a similar number from nurses.

A friend suggested that when the calls come, and I establish that my mother hasn't passed away, I say "I'm sorry, but if you're not a doctor or nurse I'm afraid I can't take this call right now" and hang up.

Getting a different proxy is not an option, btw.

Any suggestions?
 
I'm not any kind of great advice person but . . .

Pretend it's the seventies. You had a phone on the wall of your house, and the school would have had to receive the call at the office and forward it to you or send someone over. Were you irresponsible back then for not being instantly responsive? No. Would it have been an unusual circumstance that you might have found out urgent information an hour or two later? No. So you're not irresponsible by turning your cell phone off when you're working or busy, and just checking several times a day for messages instead of constantly digging in your pocket everytime it vibrates (or wherever you keep it). Being inaccessible for limited periods of time is how normal life used to be conducted.

I am in a similar situation because of my mother's age and now being the only immediate family member. And soon maybe in your exact situation. But I know I can't live my life like a doctor that is on-call 24/7. It's impossible and probably will not make a huge difference when I do eventually get that unwanted call.
 
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Thank you. Am hopeful anyone else who has had any kind of similar situation can weigh in. I thought the hard part would be dealing with the emotions around my mother's demise, but I have had ample time to process that part (though it's still tough, because when conscious, she's still sharp).

I just reached a limit this year with chirpie social workers calling about (blah blah blah).

OTOH, I don't want to piss off / frustrate the actual medical staff.

Edit: looking at the above, the reason I don't want to "send to voice mail" is reflected by a call I got two weekends ago, where a doctor sought my consent to do chest compressions .... even though ALL paperwork is on file, and etc., he would not have done them without my urging, and I said "go ahead, please."
 
My mother died in June of 2015 after heart surgery...she spent about 2.5 weeks in post-op ICU, never made it out...

Prior to that she was in and out for various surgeries and procedures for several years, slowly deteriorating the whole time...

I was her primary care giver and shared Proxy and Durable Power of Attorney duties with my sister...

As you well know, every time she was admitted (or re-admitted) it was considered a new case, and all previous cases and arrangements were invalid for consideration and had to be reset...every time...add to this the fact that every time a shift changes the case workers need to be briefed and it is an administrative nightmare...

In my case my sister and I were able to share the load, making what you're experiencing a bit easier to deal with...is it possible for you to designate someone as co-proxy? Or possibly designate someone as a secondary contact, to be available at the times you're not?

I think maybe, if you haven't already, talking to the hospital's patient care director could be beneficial...if you can get someone in authority to understan your situation they could possibly find a way around the constant need for proxy contact, or perhaps at least issue a directive requiring they honor your contact wishes...

Dan, I wish there was an easy answer for this...

One other thing...an offer of mojo or best wishes, or sympathetic empathy for what you are going through is such a pathetically futile gesture, as I know, but it's all I have...so mojo, man...I know how much this sucks...and no matter how ready you may think you are for that call when it comes, you are never ready for that call when it comes...

Peace, man...I'll here, as are we all, if needed...
 
i am on board with the talk to the patient care director.....or perhaps the hospital administrator. the people who are calling you at all hours of the day and night that have nothing IMPORTANT to say are being self centered jerks. "i'm important and i want an answer right now" kind of shit.
 
Thanks.

There is no one hospital; as an example, she has had four transitions in the last three weeks. Discontinuity of care is a major issue, so pissing off doctors (who already discharge too quickly) is a concern.

My sister is in Europe, and shares my duties. Actually, she does much more than me, completely parenting my mother when she is at home (paying bills, coordinating care and etc.). She does that from Europe.

I'm wondering what the ramifications might be of being dismissive with caseworker types. I used to be the calm, placid family member the staff preferred to speak with, and I just .... lost it, turned into a complete raging bitch this past year, because (for example) I will text them "can you please call me after 4pm eastern?" and they call me (at 1:30 pm eastern) literally 10 minutes later, saying "Oh, I guess I didn't understand. Uhm, listen, we're sending ..."

I'm serious, these people are making me fucking nuts. They are sooooo disrespectful - and it's not one facility, it's ALL of them, and this one particular class of employee.

The problem is, they talk to the medical staff and that definitely influences my mothers' care.
 
I fucked up. I wish to say that I am sorry for others who have had to deal with this. Aging in the US is ugly these days. I know I'm far from alone.
 
I fucked up. I wish to say that I am sorry for others who have had to deal with this. Aging in the US is ugly these days. I know I'm far from alone.
No, you're certainly not alone...and aging is ugly these days, not just in the US, but everywhere...it raised for me and mine a serious question of when a dignified life should be allowed a dignified death...

But don't feel guilty about being self-centered...when you're involved in it as deeply as you are it becomes an all consuming thing, to the point where you are truly isolated from everybody else...
 
Luckily, I haven't had to deal with this yet. My folks are in their mid 60s. My dads parents lived in the same neighborhood as my folks at the end of their lives, and they had to deal with similar things, but usually my dad was the one taking them to the hospital so he wasn't getting called. He had also just retired from teaching so he didn't get calls when he was working and not available. My mom's parents moved in with my parents. My grandfather died about 10 years ago but my grandmother is still chilling with my folks.

I agree with Rickenvox though. Just because we have phones in our pockets, doesn't mean you are available 24-7 even for calls like this.
 
Reading the posts here just reinforces, in a way, how lucky I was. My dad lived pretty much on his own with some support from my brother, and went pretty quickly with relatively little drama related to hospitals. The home hospice people were amazing, too.
 
Agree with both Rickenvox's and Jello's suggestions.

I'm not in your situation yet but when at work if I'm in a meeting I put the phone on silent. That leaves me in control of checking if there are any calls or messages I need to respond to.

In terms of people trying to contact you at unsociable times, getting in touch with the relevant bosses as soon as your mother goes into a hospital is probably the only way to get on top of that. If there's a standard set of questions that you keep getting asked that the answers are already on file for then ask them to ensure the staff are aware of them.

Mojo.
 
Thanks, and I return the sentiments to all. I smiled at "being self centered." I tend to 150 teenagers every day, then a spouse in a residency program, all while getting endless inbound calls regarding my mother. Some days I can't even remember what I had intended to think over when I got time. Most of that, I'm grateful for.

Re: the silent mode, I really can't. There are moments when they need an immediate verbal to do a life-saving procedure. And I have promised my mother to do so, and will fulfill that promise.

I'm thinking that I need to figure out how to cut off case workers like the disguised telemarketers they are.
 
Get a cheap Tracfone and tell all of the non medical people that you've changed phones. Give them the tracfone number. When the tracfone rings, you know you can let it go to voicemail.
 
Without a do not resuscitate order in place, or being in hospice, health care providers are legally required to administer life saving actions. At least in every state I'm familiar with. I'm not sure why they'd be calling you.
 
As an only child who took over for both my parents at practically the same time all I can do is offer my sympathy and understanding.
Myself, I never turn on my ringer unless I'm expecting a call. Even back then, I just checked my messages more often.
 
Went through all that with wife's father. It is a hard thing to know what to do. The only thing I have to offer is to say we had to find a way for her to figure how to handle it without feeling guilt if it was something bad when she was wishing they wouldn;t call her. Human emotions can wreck havoc on rational thoughts.
 
I offer this info to Gomez in the hopes that it helps any/all.

First, my mother has a completed MOLST form (Medical Order for Life Sustaining Treatment). Her choices indicate that any / all attempts are to be made to save her life. That document is on file with a great many hospitals. So - things ought to be OK.

Here is what I have experienced over the past six years:

* Emergency Rooms who need to act within minutes and simply cannot scare up the document. However, my phone # is somehow super-easy to find (not saying this bitchily, they are different computer systems and understandably they do what is most efficient and best for the patient, which is call me). Until US healthcare facilities have seemless IT, this is going to continue.

* Please, please read this admittedly lengthy part carefully. One day in 2014, I came to learn that my mother DID have a DNR, all of a sudden. I'm going to try to shorten this, so please bear with me. It appears that if an MD judges a patient to be competent, that MD is then allowed to change the MOLST document with the patient. At any time.
Here is how it happened with my mother: she had respiratory distress, so was intubated and on a respirator, but was able to communicate with a doctor. The doctor thought he'd take some initiative (more on this later) and asked my mother what year it was (she got that correct); how many kids she had (also correct); and who was president (she answered "the black fellow, he's so nice"). Even though her oxygen was <90%, and as an Ivy League grad I would say she was FAR from her mental best, he then judged her competent for the purpose of redoing her MOLST. He then asked her (pay attention to the phrasing) "You don't want to be on a respirator the rest of your life, do you?" and she said "No." and he marked that she should NOT be intubated to resuscitate. Think that through: a woman who has been successfully temporarily intubated many, many times, was asked if she wanted one forever. And then redid her MOLST.

Yes, he is a dickhead. I have had to deal with him since, and am glad to say he's the exception to the rule of terrific physicians at greater Boston area hospitals. That they get so much so right so often under such trying circumstances never fails to amaze me. And my mother has had good quality of life in between hospitalizations, so they are not throwing "good money after bad."

However, it was an object lesson to me that there is a huge gap between how things ought to be in facilities, and how they are. I thought that MOLST documents were set in stone, and they just aren't.

************
The burner phone sounds fun, and maybe I can give it to strippers, too. Hey, maybe I could give the numbers of the non-medical staff to strippers!

Now we're talking.
 
FWIW, part of the issue is that my mother has a psychiatric disorder, so when she IS able to communicate, you either get Dorothy Kearns Goodwin (erudite Ivy League Lady) or a batshit nuts old woman (THE GERMANS KILLED THE KENNEDYS!).

Not sure whether to laugh or cry dept: when I tried to alert the nursing staff at one place that my mother was hypoxic because she was saying the Germans killed the Kennedys, it was clear that they really didn't understand that the Germans didn't kill the Kennedys. (We all know it was the CIA ... just kidding ...) And all I could think was "holy shit, are they dumb."
 
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