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.
Your sister may feel in overload as she is the closest physical caregiver. If I were in your physical shoes, I would try to talk to her and ask her what else you can do to help her care for your parents. If you are 8 hours away, as a hands on caregiver (which I am), I can guarantee you from that perspective that the caregiver load is not equal.
I am not insinuating you do not want to do everything you can for your family. Your sister does not need your criticism. Decline of parents is very hard. Emotions run high. Went through it with my brother. Please do not give her reason to think you are going behind her back.
As I do not know if there is inheritance at stake that would motivate some siblings to drive a wedge, my money would be that your sister is not trying to deliberately exclude you. She is in overwhelm.
If you are on HIPPA forms, you can talk directly to doctors.
HIPPA - Health Information Portability and Privacy Act.
What is it like being a "long-distance caregiver"? I ask because I wonder if that is what people in my family consider themselves at times or all the time. We have some very helpful and supportive family members. Any insight there is appreciated. Another thing I thought of is that sister may have gotten legal matters under control and has the POA's necessary. One last thing, I wholly respected my parent when they state they donnot want to share information with people. It may be that is what happened with your sister.
I also live about four hours a way. I have offered multiple times last year to have my mom visit. Two visits were scheduled and both were cancelled. The last one was Christmas and I was so looking forward to seeing her.
I too have offered practical help but my brother has refused. My brother does live with her but he has lived with her for years because of finances and then as she got older he took on the caregiver role.
I have offered my home to my mom but she hasn’t wanted it and now I think it is too late.
I would definitely try to work with your dad and your mom as they are able, have a conversation with your sister and see about getting the legal documents in place. Also know that co-POA can be appointed. It doesn’t have to be only one person.
Wishing you the best, Newdawn
and
"Tell us specifically what exactly you have done, how often you have done it and how you plan to help more in the future. Then we'll be able to assess if you really are the caregiver you say you are."
yes!!
In the end, all you can control is yourself and your situation. Try to focus on the concrete things you want/need, and find ways to get them. Your sister is choosing not to do the "tell sib about X" role, so go around her: get in place the things that will give you access to that information. Be named on your parents' healthcare POA and HIPAA waivers so you can call doctors directly, ask someone on the ground who has agreed to share that info with you (your dad, sounds like), and use those avenues of information as often as you need to. Just cut your sister out of your expectations. If she's stepping away, then she could cut her losses on the house, move away, pull back on her caregiving duties...that's all choices she could make. When you feel you can have a calm aside with her, maybe you could ask how you can help her get where she needs to be and still keep your parents safe. If she's planning on stepping back further, then that could help you two plan how/when to bring other services to bear to fill the gaps.
As others have mentioned, if neither you nor she has POA for your parents, then NEITHER of you are entitled to their medical information in the eyes of the law, from anyone. As I understand it, they're both legally making their own decisions and can restrict their medical information however they want, including asking your sister not to tell you about things that happen. It's a dangerous situation, it sounds like, if they need this much help, and I'll add to the chorus of people who suggest that your mom and dad get a will/POA/blanket HIPAA waiver in place ASAP, or they may find themselves in a medical emergency where neither you nor your sister are legally able to make decisions for them.
Also...one of the biggest gifts I've given myself in long-distance helping my dad was to forgive myself for not being 1000% up to date on EVERYTHING. It's very hard to keep track of other peoples' business, especially if you're not living with them. Things fall through the cracks, due to chance, or blind spots, or sheer human error. But if you build a good system and have good avenues of communication with willing people, then the important things filter through to you most of the time, and that has to be good enough.
Something that a person who sees their parents once or twice a year will never understand.
That is why I HATE when people say caregiving the elderly is like taking care of children. Children grow and learn and become more and more who they are. They take over responsibilities and chores....not so with the elderly. They become less and less of who they were, unable to do chores and struggling with the memories that they used to be able to do everything.
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.
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.
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.
"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.
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).
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.
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.
Your profile says Mom has Dementia but seems Dad doesn't if he calls you. So, if Dad is competent, I would think he makes the decisions concerning him and Mom. How do u mean cohabitate, sister living with parents or parents living with sister. It matters if she lives with parents because its their house their rules. Maybe she has been told by Dad that she is not to give you any information, for whatever reason. And by sister saying "Mom has given me permission" she is trying to tell you she is not in control.
There could be lots of reasons ur sister and parents don't tell you anything "immediately" because...you can't do anything about it. Its a phone call that does not need to be made right away because...there is nothing you can do.
What kind of assistance do you give 8 hrs away. Is it just you making suggestions, when you have no idea what Sister is going through 24/7 caring for two people one suffering from a Dementia. Have you given ur Sister a week or two off so she can take a vacation? Is she being paid to do the caring?
I think if Dad has no cognitive problems, then you should be talking to him not ur sister. Your sister answers to your parents not to you.
There is a reason why she is no longer sharing information with you. Are you critical when talking to her? Is it "where were you when Mom fell" Like its her fault Mom fell. As time goes on the stress of caring for 2 elderly people is going to be more and more. Your sister is dealing with a lot on a daily basis, she doesn't need a sibling, who is 8 hrs away, trying to tell her what she should and should not be doing. And...you may not be doing that but you have done something where she is limiting the time she is talking to you. So, time to look at what you do and say.
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.
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.
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.
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.