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My sister lives with my parents. I live 8 hrs. away, and provide any assistance I can from a distance. Typically, my sister would share info about their health such as appointments or major events. However, she would only do so a few days after. I've been learning about my parents' major health events several days, and sometimes almost a year later. My sister has decided that she will either no longer share with me how my parents are doing. Or she will share it on her terms. She will text me, and say, "Mom said I'm permitted to share this with you." My parents' condition has always been kept between the four of us. Recently, my mom fell backward on her head, causing a minor brain bleed. She was in the hospital for a 24 hrs. and released. My father called me the next day to inform me about it. I'm upset my sister didn't call me when my mom was admitted to the hospital. She had agreed to call me as soon as possible during major health events or critical appointments. I've decided to call my parents multiple times a week, and not involve my sister. I've also thought about talking to an attorney to advise me of my rights, since I am also their caregiver.

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Dearest Poster.

I have calmed down from thinking "are you ****ing kidding me" to thinking "ah. Clueless."

Look.

It has only recently occurred to you that you might call your father a few times a week for a general update.

And yet you consider yourself just as much a caregiver, and just as entitled to real-time information, as the person who is meeting your parents' support needs 24/7 on site.

You cannot have any idea what it is like to be the person who is sitting with your cognitively impaired mother in the ER, fielding multiple questions and chasing multiple tasks while reassuring said mother and keeping her comfortable. Otherwise you would understand that "oh, gosh, yes, must call Sister [ed. - I beg your pardon, is it Brother?] who is unable to assist with any part of this activity to update her as a courtesy" is not going to be on anybody's priority list at the time; and as for letting you know once the dust has settled (probably quite briefly) - well, if your response has been an indignant "why didn't you tell me straight away?" why would she set herself up for that when there's no particular benefit in sharing the information anyway?

So that you can make the decision about whether you need to visit or not. Mm.

In what circumstances would you travel to visit? In order to contribute what?

Also, very important: looking back at earlier occasions when your sister has said she has permission to share information with you, this sounds a LOT as though your sister has been told not to tell you about numerous incidents that your mother "didn't want to worry" you about ("I didn't want to worry you" is one of the most enraging sentences in the English language. That, and "I was only trying to help."). I myself have handed a phone to a lady whose son called while the lady was actually lying on the floor where I had found her twenty minutes earlier and heard the words "I'm fine, the nurse is just here helping me get dressed" come out of her mouth. Do not suppose it obvious that your sister can decide that she will simply overrule your mother's wishes if your mother states that she doesn't want the news getting around. It is not obvious, it is an ethical tightrope.

Don't retaliate by getting narky back at your sister. Think about how you can make communication work constructively and pleasantly for all concerned, and set about that. This is not about your rights, it's about discriminating between what is Helpful, and what is Not Helpful.
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BurntCaregiver Feb 2022
Amen to that, Countrymouse. The sister isn't going to overrule her mother about discussing their health matters. God only knows the hell that sister will have to pay is she innocently speaks out of turn and discusses something the secretive elderly parents don't want told.
"I didn't want to worry you". "I was only trying to help". You forgot one.
"I don't want to be a burden".
Don't be one then is my usual response.
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The statement right there, "Mom said I'm permitted to share this with you" says it all to me.
You are not also their caregiver from eight hours away. Whatever assistance you offer from a distance cannot even compare in the slightest way with what your sister deals with every single day. If mom and dad live in her home her life is hard. If she lives with them, her life is a living hell because she has no rights whatsoever in the house. When a senior parent or relative becomes eldelry and needy, NEVER move into THEIR house to provide care to them. That is making a deal with the devil and don't I know it.
Honestly, I hope you don't make such an insulting comparison to your sister.
Her life is hard. Just the fact that she made this statment to you means she's dealing with secretive elders and God knows what else.
You did well to start calling your parents directly and not expect your sister to report to you. Who knows how many times your sister has gotten in trouble with one or both of your parents because she didn't guess their minds correctly and reported to you something they didn't want known.
Instead of contemplating discussing your rights with an elder lawyer, why not give your sister a call and see how she's doing. Take some interest in what her life is living with two secretive, elderly people.
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lealonnie1 Feb 2022
Or even better, see what you can physically DO for your sister OP, rather than go to a lawyer to find out your 'rights'!!!!!!!!!
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I can save you the attorney call. You have ZERO rights to know anything about your parents that they do not wish you informed of even IF you are medical POA, which I assume your sister is the primary on. Your Sister used the phrase that your parents now "allowed her to inform you". That means the parents did not give your sister permission to call you until them. Your Sister is clearly POA for healthcare. That means she FOLLOWS INSTRUCTIONS of your parents (who may not want you notified because they don't want you rushing there right away) when your parents are are able to give said instructions. There will be many things happening. Many require a few days wait and see outlook. That is what your sister is doing.
Your sister clearly is POA for healthcare of your parents. Therefore the hospital will share info with her. You say you are caregiver to your sister, but you don't give hands on care, and therein lies a huge difference.
I would simply continue to offer all the support you can to your sister who is doing all of the care at present. I would tell her you are very concerned with anything medical and hope to be informed as soon as possible.
What can you imagine the benefit to be in your being called at once? Do you intend to drop everything and rush there? WHY would you do that, just adding to all the trauma going on.
I would, myself, tell my Sis what a marvelous job she is doing, ask her how I can help from so far away, tell her I hope she would keep me up on things as she can or as she feels is best, and then hang up and thank my lucky stars I was the one who is 8 hours away. Kind of kidding you there, but understand you can't hear my tone.
Please recognize the difficult work your Sister is doing. Please support her. I understand you are concerned, but your concern doesn't change a THING about the constant large and small crisis she faces DAILY head on. You are simply an added burden at this point. So, until sis says "You need to come help me NOW" be thankful.
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TheBlueHen Feb 2022
Thank you for the reply. My sister
is not Medical POA or POA in any form. My father told me last week to call him if I want to know what’s going on. I have always supported my sister, and have visited to help. I work remote, so I can make plans to be there when major things come up. I appreciate all that she has been doing. She understands it is her choice to be their primary caregiver, and she has expressed that she doesn’t want to be. I don’t fault her for feeling that way. I have made them aware that I don’t have the ability or desire to be a long-term caregiver. I understand her stress, because I helped take care of my girlfriends’s dad 24/7 for the past 5 years. She is choosing to be their caregiver. She and my brother-in-law bought a house together with my parents last year. I can’t provide help unless I’m kept in the loop about what’s going on with their health. My parents are still able to make their own decisions, and as children we have to afford that to them. My sister and her husband leave for a week or two at a time and my parents are left with someone stopping by to check on them once a day. For now, I have to rely on my father to keep me updated.
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Am struggling to understand how you are a Caregiver if you don't know about a major event for a year?

Your sister, who lives with your parents 24/7 is the Caregiver. She must be so busy doing hands-on care for 2 declining elders. Sounds like she has given up most of her life to care for them. Your sister sounds like a caring and compassionate person. Your parents are fortunate to have her with them. She must be so tired, but yet she never stops - now, does she? Please be a bit kinder to her and her needs.

And, yes - it would be great if you called your parents multiple times a week.
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TheBlueHen Feb 2022
Thanks for you reply. Well, my parents got stuck at my sister and brother-in-law’s during the beginning of the pandemic. At that time my mom was fine, and my dad had some ambulation issues. They decided to buy a house together, but my sister had no intention of being a long-term caregiver. She and I have always agreed it is her choice to do so. Recently, she has admitted it is becoming more difficult. She leaves the house to travel for weeks at a time, and my parents are let alone with someone to check on them once a day. I have been there to help when I can. I work remote, so I can be available to help when more major situations arise. But I can’t make plans to help if I don’t know what’s going on. My mother contracted COVID Jan. 2021, and my sister didn’t tell me. So I couldn’t be there to help with my father if my mother became hospitalized. My dad assumed that they had told me. You don’t have to be present 24/7 to be a caregiver, and you have to be informed so you can provide care when needed.
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So sorry we have been judgemental. But a number of us have done this type thing all by ourselves with siblings not being involved and some of those siblings criticizing our efforts.

Thank you for more info. Do you think that maybe buying a house together may not be going well? Maybe she is seeing that Mom and Dad are declining and will need more and more care which she is not willing to give at this point.

"She understands it is her choice to be their primary caregiver, and she has expressed that she doesn’t want to be." This sentence is contradictory. She understands its her "choice" to be parents caretakers but then says she doesn't want to be?

Maybe you and sister need to sit down alone and have a good talk. Listen to what she says. Then figure out what you can do so she doesn't need to be their caregiver 24/7. Maybe the house can be sold. Your parents contribution used to place them in an Assisted Living.
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The fact that you're considering a legal consult to address your rights suggests to me that the relationship between your sister and you is not an open one, and that either the two of you don't work things out, or more likely that your sister is busy caring for your mother.  

When I kept family and friends up to date on my father's conditions, it wasn't on a daily basis; it was on an incident basis.   And I only contacted them after the incident occurred so they could know how or if when to participate, given that after the incident, a diagnosis existed.

Instead of finding fault with your sister, have you considered asking how you can help her?  If you're working, take FMLA time, spend a week taking care of your parents and let your sister have a break.  

You need to be considering how you can help in this situation, not thinking about contacting your parents w/o involving your sister.  

These are times to help each other, not find fault.
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TheBlueHen Feb 2022
Thank you for your thoughts. I really can’t pinpoint why my sister began to stop communicating when major incidents have occurred. I have always supported how I can. I work remote, so I do have the ability to help. However, she continues to choose to be their primary caregiver. She has told me that it is becoming too much on her, and she really doesn’t want to do it any more. I don’t have the ability nor the desire to take care of them for long periods of time either. My sister and brother-in-law and my parents decided to co-own a house last year. Neither of us are POA. I’m just asking for courtesy calls when something major happens so I can make plans to support if needed. I can’t do that when someone lets me know days, weeks, or months after they happen. I’ve begun to chat with my dad a few times a week, because he said he understands that I need to be kept in the loop. He and my mom are still able to make their own decisions. We have to be the children and let them do that while providing support or tools that enable them to do that.
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Sorry that you are getting defensive but no ... you are not a caregiver. You are basically a monitor adding to the stress of the caregiver.
And at this stage from what you say of your parents health, the fact that your sister still goes on trips while having someone check on them once a day, is great!

Call your parents often! That's a good thing to do.
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Here's what you need to be doing -- get with your folks and your siblings (so no one suspects subversive motives), and discuss getting your parents' affairs in order. They should have wills, possibly a trust, and both durable (financial) and medical powers of attorney with someone in your generation named after each of them who can take over if they aren't able to do the job for one another. In other words, Dad holds Mom's POA, but if he's not able to do it, one of you is named as next in line. Mom shouldn't hold POA at all now if she has any level of dementia, so if Dad needs care, one of you should be primary POA and others succeed that one. Do not let them name multiple people as POA -- it's asking for endless conflict like you and your sister are having.

All this needs to be done by a trust and estate attorney without you all sitting in the room, so no concerns exist about coercing them. However, these discussions need to happen as a family before any big crises arise, and they're playing fire if they don't have those documents in order by now. If they do, this is not the time for secrecy -- someone needs to know these documents' whereabouts when the time comes.

Otherwise, as Alva said, you have no legal rights to information if they haven't granted them to you. Talk to your folks about putting you on any HIPAA forms (Sis, too, of course), so you can talk to their doctors if need be. Tell them you won't be calling their doctors to snoop, but only if they need assistance with doctor issues.

It's good that you're talking directly to Dad, because your family sounds like my husband's. Everyone assumes someone else called us about crises or other news. We're the only ones (of seven siblings) who don't live within an hour of the rest, and we never heard for days when his mom was in the hospital, when she got hit by a car, or even when his sister got engaged a week before we did!

You need to go as close to the source as possible for information and that's Dad, so keep calling him.
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Why don't you talk to your sister & ask if she's ok? Your sister needs help & support not a kick in the teeth! Try showing you care instead of going against her. My sister doesn't realise how hard it is to look after OUR dad but seems to think it's ok to stand back & let me do all the work. Sorry for being so blunt but you really need to do some real caring for your parent & sister to find out what being a carer is all about! Your parent won't last forever so make the most of your time together. In top of this your sister has every right not to bother with you again.
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I find not disclosing a parent had Covid very strange indeed.

Hmm 🤔

Is Mom with mild dementia controlling?
Is Dad the peacekeeper/pleaser?

Only you know your Sister's personality... Sensitive? Like oblivious to health issues but then guilty later when disclosing to you? Or indicates she feels judged or bossed by you?

Or is she a controlling type? A drama lover? Or worked to the bone, exhausted & depressed?

Whatever her motives, it does seem she is shutting you out.

I think better to avoid that triangle loop & agree to call & talk directly to your Dad. How is he btw? Is he happy with the arrangements?

You said Sister doesn't want to be 24/7 caregiver - yet she co-bought a house.. is she feeling resentment about the situation & looking for someone to blame? You not being there would be an easy target. I hope not! You are not her understudy anyway!

This happened in my DH's family. One volunteered to help, got overwhelmed & sent out guilt-trip-come-be-my-backup-now calls. Another that always offered to help & would actually do anything for you in reality has zero spare time.

But honesty cleared it all up - fast & respectfully. Good clear communication is key. Keep pushing for that.

Keep suggesting a proper family meeting. Where everyone gets listened to. Say how much they can do *realistically* & what needs to change going forward.

This will be your Sister's chance to be honest. If she wants out, to be a big girl & say so. (Not any Yes Yes Yes to the folks & no no no behind their backs).
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