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I ask because it is not unusual for a noncaregiving person to tell those who want to give it a try, if you do this you're on your own. I'm not helping. It is very crushing for the person wanting to try to keep mom at home, or simply isn't mentally ready to put mom in a facility, to find out the noncaregivers will draw a line in the sand and refuse to help at all. I mean, if I want to give it 24/7 try, it would be kindly for a sibling to offer to give a little respite for a few hrs, a few weeks a year, etc.
If that decision caused this family division, one of the folks on the outside of the current caregiving team -who is the best at keeping peace- might reach out and try to smooth things with the others. That may or may not work, but worth a try. If talking doesn't work, send the calmest person over there.
Unless there is a protective order against all of you, how can they keep you out of mom's house?
You said you contacted an attorney to get in. So now that you can go in, have you all made regular visits to see how she is? You sound as though you aren't really certain if mom can sign the HIPAA form, so I don't understand that statement if you have been inside the home to visit with mom. If any of you ever took mom to the doctor overseeing her current care, it's possible one of your names is already on a HIPAA document at his office. Check on that.
If you find that the "custodial siblings" continue to shut you out, please contact a lawyer who specializes in family law, law for seniors would be even better, to advise you of options.
As noted in a response to another comment, even if the beef is about not being "even" or "fair", how does shutting you out help make it more even or fair? That makes no sense.
I wish my siblings were more like you - at least trying to help out and wanting to visit your mother. I know OB hadn't seen our mother in over 2.5 years (he isn't local, but he was here for 2 weeks prior to that, visited once with me, a second time alone and REFUSED to go back stating he didn't know what to do with her. If you could have seen her reaction on that first visit, you'd know how thrilled she was to see him and THAT alone should be enough to tolerate 15-30 minutes of visit during what would be his last trip to the area (she had dementia, repeated herself a lot, but was otherwise mobile, wearing her hearing aid, still some fun to be around.) YB is local, but to the best of my understanding, other than a couple of eye treatments he begrudgingly took her to (I could no longer support her weight, but did it for 4+ years before that, without complaint!), I don't think he visited at all during those 2 years. But, ever the dutiful-appearing son, he showed up when she was in her last hours, spent the night, yadda yadda - where were you for the last 2+ years, jerk?
I used to inform him of special meals and events and ask if he wanted to go (they need head count, I wasn't saying go!) It was like torture trying to get an answer!!! Mind you, this is an "i" person, lives for his phone, silly iWatch, etc, so there's NO excuse for not seeing/responding to a text message or email. None. Some were never answered. Some answers were way too late. I finally just stopped asking. I had enough to do and think about without chasing him down! I swear he'll miss his own funeral...
Now, just as dragging his feet when we were setting up the trust, he's dragging his feet again, which is STUPID! There's no work to be done, no visits to make, just $ for you and we're in a holding pattern for hop-along-when-we-ever-get-around-to-it! I'd like to finalize the trust so we can close it out, I won't have to maintain it anymore, will only have to do one more tax filing and be done! I've been the one managing everything and visiting mom. Pension, SS, trust, bills, supplies, medications, appointments, you name it, I was it (except for those last few eye treatments, but I was the one to MANAGE it still and stay up his butt so he'd be there AND on time!!!) I get to be exec as well....
Knowing back in the day (college for 2 of us), both OB and I were miffed with dad not telling us mom was getting treatments and was "out of it" - I called home for apple recipe and YB (about 10 then) says mom's not there, she's in the hospital. Dad then. Nope, he's visiting mom. He did call and gave some info - told him he'd better call OB!! So, I come home shortly after for Thanksgiving to a strange car in the driveway. It's my aunt, watching over my mother, because dad's in the hospital and mom is loopy! We NEED to communicate! I agree that if not POA, one doesn't have the right to details, but still, an overview of condition OR allowing visits, geez.
So, despite being on the outs with OB (hadn't had any contact in 2 years thanks to his abuse), I wrestled with telling him about mom's stroke. I knew I couldn't count on the other telling him. My conscience won the battle. It took 15 HOURS to get back "thanks for update" No questions, no concern AND that long, for another who is always face-planted in his phone?
I will be done with BOTH when all the ink is dry and all funds distributed. DONE. Wish YOU were my sibling...
One sibling kept harassing me for more updates so I gave her the room number mom was in and the number to the nurses station so she could call herself for updates. I called my mom that night and she said none of the other siblings had called her. The next day, I had to be at the hospital at 7:30am (in a town an hour away) until about 1pm. We got home about 3pm and several hours later I had to take her back into the ED. My sister said I wasn't providing enough updates because I didn't answer when she called.
Why is it my responsibility to provide all the updates? Are her fingers broken and she can't call the hospital or our mother herself? Do I not have enough to do without giving her updates because she's too lazy to call the hospital herself? She stops by about once a month for ten minutes and suddenly now that mom is having surgery, she needs frequent updates? What about the other 364 days of the year?
When you were doing your 24 hours once every two weeks were you also helping in the home or just sitting there while the hours passed? My sister covered one 8 hour shift in the last three weeks so I could go to work. She came an hour after I left, left for an hour around lunchtime and left an hour before I got done at work. She didn't empty the commode at all, didn't help wash any of the urine soaked clothing or bedding that I wash every day, no help with any cleaning and basically made mom feel like a burden the whole time she was here. When I got home my mom was sitting on the couch sobbing her head off because she couldn't get up and was alone. Really wasn't any help at all. I work fulltime and she doesn't work at all, I ended up taking FMLA for several weeks as mom can't be alone and I don't even want to ask sister for anything than maybe checking on her once a day because of how that one day went.
My thought is that this situation with your siblings was probably building up for a long time and finally spilled over into what you are now experiencing. You can't expect them to involve you if you aren't going to make the time to involve yourself. If you want to know more medical information then start attending doctor appointments and communicating with her medical team, start offering to give mom a ride to the doctor or pick up her medication when it's ready. Drop off a meal occasionally, stop by and throw a load of laundry in, take out the garbage or wash some dishes. If you were doing one 24 hour shift once every two weeks, that's nice but there is still a lot of time left. If you can't contribute more time, then maybe you could contribute more financially to help take care of mom.
You just described one of my sisters to a tee. I suspect you also described many other people's siblings as well!
A number of years ago, before my mom got so sick, she had a wicked case of vertigo that landed her in the hospital. We didn't know what was wrong at the time. I called both of my sisters. One drove to my house that night. The other, the one I call an absentee landlord, asked me on the phone "what can I do?" I told her the only thing I needed from her was to answer her phone when I called; I didn't want the stress of playing phone tag to give updates on mom. Of course she promised; and of course anytime thereafter I called, she wouldn't answer, neither home phone nor cell phone. I mean really, how hard is it to answer a phone? I suspect the reason was, she didn't want to be asked to do anything - so if she didn't answer her phone she could claim plausible deniability - is. "I had no idea it had gotten so bad! If I knew how bad it was, I would have come to visit!"
Indeed, when mom was actively dying, my husband did me the huge service of calling her to tell her the end was near; if she wanted to make her good-byes, she had better come soon. That was Sunday night; she swore she was "too busy" with work to come Monday (I mean really? What job won't give you time off to say your good-byes to you dying mother?!?) so she and her useless husband came Tuesday. When they saw mom in bed, semi-comatose, her idiot husband said to my husband "I had no idea she would look like this, I figured she would at least be awake and talking". Really clueless. Thank goodness I have another sibling who "gets it", whom I enjoy spending time with. We are planning vacations together once the world gets back to normal, and have no intention of telling or inviting third sibling. As my sister says, if you want to be involved in our lives, then you also have to make the effort to be involved in our lives."
I wanted to continue with my 24 hour care every other week.
You say mom is at the end of her life. Getting an attorney to draw up a new HIPPA seems, to me at least, a waste of resources. If she's at the end of her life, what is it you want her doctor to discuss with you?
You say "the ones who made the decision on their own to keep her home and are carrying the brunt of the responsibility are suddenly not allowing the rest of us to help with no exception." So, out of the blue, suddenly you have sibling(s) doing caregiving and won't allow any of you to help? That's not usually the case - usually there is some issue (issues?) that pops up first to bring things to that point. "Get an attorney to be able to come in to see mom" is not usually the first response to a family disagreement-that makes it seem to me that this animosity has been brewing for quite some time.
Not trying to lay blame here, but if you can figure out the reason for this "sudden" shift in attitude, maybe you can try and fix things so you can at least see your mom, without involving lawyers, which - let's face it - will take time and resources that could be better used to make you mom comfortable in her last days.
Perhaps contacting a professional mediator will be of more use than an attorney.
Good luck.
one sibling who has been doing 24 hour shifts weekly has been pushed out. I have have done 24 hours every other week. The four that cover the rest are not working. It’s definitely uneven based on ages and professions but that can’t be helped. There is animosity towards the unevenness.
we’ve tried to have a meeting with or without a mediator more than several times.
hospice was suggested. They refused.
they refused hospice
they’ve refused meeting with a mediator or any meeting
And an elder unable to sign to share medical information should not be asked to sign.
You have one person who is the POA as I understand, and that person is blocking 7 other siblings from visiting? Is that the case? If that is the case, yes, you will have to, after trying to communicate with the siblings, see a lawyer to check on your legal options. They may be few.
My move here would be that the one of the remaining 7 who gets along best with POA sibling contact to ask reasons for the shut down. IF this "gets-along" sibling can continue to communicate, I would form a phone tree to keep up on current condition. That is to say POA siblings speaks with sibling they still like, gives daily briefing, and phone tree passes it on one sibling at a time.
It is unusual for a sibling "in charge" not to want the help of others. I suspect "something has happened" in terms of judgement, squabbling about care plans, etc. to cause this situation. Have you any idea what that might be?
What help do you want to do, now that she is at the end of her life?
Often it is the primary caregivers (aka the ones that carry the brunt of the responsibility) that know best what the elder person needs. Is hospice involved?