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My mother checked into a rehab facility outside of the US to recover after her stroke today. I'm currently in the US but will be going to spend time with her and help her as much as I can as soon as she's released. Her brother and my sister took her to the facility today. They each live a few hours drive away from her. My sister has been seeing her and speaking with her less than I do despite my residing overseas. I asked my uncle to add my name to his and my sister's among the people who are authorized to discuss her health with her doctor, stressing that I understand that they will be calling and I will not call more than once or twice during my mother's entire 24 day stay there (due to the time difference, it's much less complicated for them to call). I did this ask to be written down as a contact after I called the rehab facility and confirmed that multiple people are permitted to be on this list and it does not have to be limited to one contact.



Then my uncle informs me that they were told that only one person could be the point of contact to ask the rehab any questions about my mother's health. I told him that I'm surprised because I've been told something else by the rehab when I called, and he says he's not surprised as he thinks that their customer service staff are not very great. I accept this. Then I ask him if he knows my mother's room number in the rehab. He says he does not because they did not allow him to go in (COVID measures, I assume). I ask him if my sister would know. He says that she was not allowed to go in much further than him, and tells me "Here's a piece of advice: don't bother their staff, they don't like it when someone disturbs them working. And you can't help over the phone." I responded that I asked for the room number because I befriended another lady recovering from a stroke at the same rehab (on one of stroke-related forums) who's been extremely helpful and actually recommended this rehab, and that she asked for my mother's room number so she can say hello...and that this would hopefully be my chance to speak with my mother for a minute since my mother does not have a cell phone (adamantly declined having one and refused to use one when she was given one) and this lady does. No reply to this yet. It's digressing from this post, but I could help a lot "over the phone" with just a little information straight from the doctor as I could do the legwork on looking into various resources available for my mother that I can then share with my mother as options available to her.



I feel like my sister and my uncle (my sister has been taking money from him all her life to this day, and this significantly influences her opinions/choices) are unreasonably trying to, for lack of a better word, boycott me here, which is one of the reasons that I'm definitely going over there for a few weeks, after making arrangements with work, once my mother leaves the rehab. This "you can't help" is in addition to my uncle previous advice to me not to go home because "so how will you help?" This is nuts. I thought the relatives who live closer complain when kids who live further don't help enough, so why the push back against me taking care of my mother's needs for some weeks? This is disturbing me. How do I just brush this off and do the right thing - as much as I can- without feeling uneasy about my mother's brother's remarks?

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You and your uncle are talking at cross purposes, for a start. When he said "don't bother the staff" he's talking about ringing the facility and interrupting the daily routine - every time someone has to answer the phone and chat to a relative, that person is not doing his or her actual job. You're talking about discussing a summary of your mother's medical condition and probable future needs with her doctor. These are different things, and the two of you don't seem to be listening to one another, but don't take offence at his "word of advice" (always an ominous phrase, I agree) because in practical terms he's right.

Having said that, your mother doesn't have a phone and of course you want to know how she is and how she's doing. Who wouldn't? There is nothing wrong with calling the facility to send your love and ask the general question; quieter times would usually be late morning and mid-afternoon.

Now then. So you are planning to travel to stay with your mother at her home when she is discharged from the facility in just over 3 weeks' time, is that correct? - and naturally you want to be prepared, and naturally you will need information about her care needs. Is there any dispute within the family about whether this is a good idea in principle? Is your mother keen on it? - because you can't just invite yourself, you know.

When did she have the stroke? And what do you know so far about its impact on her and her recovery to date?

Bear in mind that you have no automatic right to your mother's medical information. It is confidential, and your uncle cannot authorize its being shared with you - not without your mother's permission and/or medical power of attorney. How strict the rehab is on this point depends not only on the jurisdiction of the country, whichever that is, but also on the individual staff member you happen to encounter (some are astonishingly indiscreet, a few are so tight-lipped you can barely get them to admit to what day it is).

Should I gather that you're not happy to ask your sister for the basic information?
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Grace, in your shoes, the thing I would be encouraging your mom to do is a will, Healthcare Proxy, power of attorney and living will.

If she objects, get her the little book "5 at 55" by Ms. Grimaldi. These are the 5 docs that EVERYONE should have by age 55.
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If someone is going to the rehab, they simply ask what Mrs. Jones is in, yes?

Who is your mother's Healthcare Proxy?

If your mother is competent and has her cognitive abilities intact, SHE should be directing her own care and sharing information. If she's not competent, her Healthcare POA/proxy should be the one in touch with her Healthcare team.

I was my mom's Healthcare Proxy, although I lived almost 2 hours away and couldn't see her more than once a week, a sometimes less.

My dear SIL was able to stop by nearly every night after work. She told me what was going on and I spoke to staff/DON/Sw/docs via phone and email.

One point of contact made for less confusion and believe me, we all had VERY different ideas about my mom's treatment.
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GraceJones Apr 2022
Good point :)

She does not have a healthcare proxy/POA and she lived independently and handled all her needs before the recent stroke. Based on my conversations with her, I believe she's not cognitively impaired despite a sentence or two of word salad every once in a while. It's harder for her to write now though and her energy is lowered as she recently had COVID too, so I totally see how she would be fine with one of my relatives just completing all her hospital forms for her, or her not pushing back if a relative made a choice for her...she's still weak.

Thanks for sharing about your experience as I'm starting to navigate this world that's completely new to me.
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In all the many hospitals/rehabs/treatment centers my mom was in, ALL had a 'one person speaking to docs' rule.

Rehab is hard work. Leave your mother to it, would be my advice. Send her cards.
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GraceJones Apr 2022
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