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My parents have come to live with my husband and I. They are still independent, but have been struggling with the basics of day to day life and will probably only need more help as time goes by.


My siblings and I all noticed that they were forgetting things and having difficulty navigating their two story home. Now that I've helped my parents move and have lived with them a few weeks, I realize that it was worse than we knew. My mother is getting confused easily, which she tries to cover up. My father's temper is getting out of hand. Those are just a few examples of things I wouldn't know if I didn't live with them every day.


My siblings and I have usually kept up with one another through our parents, but now I feel like I should be communicating with them directly about how my parents are doing, though I'm not sure all of my siblings really want to know.


I imagine that hearing about it might make them feel guilty. It isn't my goal to make them feel bad or to martyr myself. (Personally, I hate whining.) I just want them to know what is going on, and that there are realities that have to be dealt with on a day to day basis.


Does anyone have any suggestions on what works to keep those siblings who are interested in the loop? What doesn't work?

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Just dont let them know anything...that's what I had to do. Nobody responds, nobody asks about my mom. Same when my dad was ill and passed. So I'm not going though the same frustration I did when my dad was ill. They judge me and talk behind my back, but I know what I've done for my parents as I now am the only caregiver my mom has. I have nothing to prove to them.
My mom used to say that my nephews(her favorite grandsons), were getting her house...I've been with her for 2.5 years She made a decision on her own to get a Trust on Death Deed of her house to me. Now my brother is even more angry at me. I dont get it? He has a bit of a drinking issue, so that's where all his money goes and he really wanted this house. When I was in my 20s(I'm 63 now). I used to say, please leave me out of any family fights, I dont want anything...but yet, here we are...
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Reply to anonymous992719
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I am just going to point out that if you send out emails, be prepared for your parents to find out what you are saying about them, and to refute it with all their might. I would love to let my Aunt know things about Mom,, because mom is always there when I talk to Aunt, who puts everything down to her hearing loss and eyesight problems. But I can promise you my Aunt would pass these "stories " along, and Mom would blow a gasket. I do have some cousins who have noticed things,, but its not the same as my Aunt who takes mom in for a week or two to give us a break. And who is not wanting to see her older sister getting worse.
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Reply to pamzimmrrt
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As someone who moved into fami@yhome to care for parents,I steongly suggest you send little snippets of video or skype.Document all/video on phone or laptop,dr. Documents,have parents write various things like little snailmail cards or notes.Make sure extremely exp@icit and legal p.o.a.s are in place.try to keep as much of the familiar routine,flavors,sounds,furnishings,colors on walls,etc. When losing your memory,it's even more scary to be in new place with new stuff,people,smells,sounds,routines.Get local help NOW before becoming unable to cope.Aging dept.,catholiccharities,Health and Humanservices,town socialworker can all help.Find a supportgroup for you and parents-local hospital,library,churchseniorcenter,?
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Reply to jambrose11
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"...but the parents will be paying rent..."

Before posting comment, I saw this. Hopefully you have been to an EC atty to set up everything (POAs, wills, etc) AND had a detailed signed notarized document for the rent set up. This will avoid ANY issues with siblings AND will avoid any issues should either of the parents ever need Medicaid. It will be useful if they forget they agreed to it as well (but by then you may have to take over their finances anyway.) If you haven't done this, I highly recommend you take care of these issues asap!

As to the changes noted since the move:

Very often people find out the hard way that their LO(s) are worse off than everyone thought. Yes, a change in environment, like moving, can precipitate some issues, but more often than not they were just very good at hiding the issue and/or no one spent enough time (even regular visits are not enough!) to really see what the situation was. This is why doctors are often unaware - they only see the patient for a few minutes.

My first inkling was during phone calls. I had a long commute, often at night, and would spend time on the phone with our mother. The repetition sparked my curiosity. When we had to take the car away and help with groceries, I found she would get stuff she already had enough of (buying chicken when there was a LOT in her freezer!) and frozen dinners. Then I noticed the fresh veggies were going bad, unused and realized she wasn't able to cook anymore. The term often used for this is 'show-timing'. People with dementia can, even for some extended periods, pull up their socks and "seem" normal (even if they are showing minimal signs of decline.)

All too often they can seem to be okay, maybe they have some issues with memory or some confusion, but for the most part are doing okay. But when you are together for extended periods, esp 24/7, the real picture is revealed! So, it may not really be a regression, but rather a reveal of the true situation.

Certainly make note of their current status, then if/when more decline is noted, you have a timeline and documentation if needed. Give it some time to allow them to adjust to their new "normal" and then reassess. If any of these 'changes' are dementia related, then your statement about needing more help as time goes by will come to pass! Learn what you can about dementia so that you can be prepared, if needed. Not everyone follows the same time lines and not everyone experiences every symptom. Patience, don't argue with or try to correct them when they are wrong, go along with whatever they say when you can (safety comes first!) even if you don't follow through.
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Reply to disgustedtoo
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Do you use Facebook? If so, you could create a group message by using Messenger. Ideally, that is the best way I, personally, like to communicate privately when need be.
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Reply to Llamalover47
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Group text or e-mail ( cc yourself so you have record of what everyone has been told). I have three tenants living in one house that I rent out; they don’t communicate with one another, so I was the go-between for a while before I started this technique. It has really cut back on me repeating myself, and it has reduced misunderstandings. Just a suggestion in case you haven’t already considered something like this.
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Reply to gemswinner12
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Gonna share some practical advice & why:

My mother has 5 children, 3 of whom have been estranged—1 for decades, 1 passed away last year, and 1 who suffers from severe mental illness and has been abusive to her. The other 2–myself and a sister out of state, remain in close contact and I keep her appraised because she wants to be. But I put all updates and concerns in writing (some texts, most emails) and keep everything in a file. I also keep all the responses (some quite abusive from 2 of the estranged siblings) in a file. This is all CYA since I am the only one here caring for our mother. I also keep every receipt and note on my mother’s account what every single check, payment transfer or cash withdrawal is for.

Unfortunately, I’ve seen great sibling relationships tainted when there are care or financial disagreements. I think it is important to keep everyone in the loop. That’s due diligence. If they ignore it all, that’s on them. (What’s the saying, “Our job is to say it, theirs is to hear it?”) But when I’m accused by someone in this dysfunctional mess of a family (and I eventually will be, especially since she’s completely out of money) for not taking good care of her & her resources, I have documentation to protect myself.

Not all of you will need this, but I suspect most will be challenged by at least one sibling along this journey, so it might make sense to be prepared.
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Reply to jcnickc
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Lots of good info here. Would suggest that you send the first update soon since you've uncovered many new details, along with how you're dealing, any plans you have, and suggestions how they can help. You need to take this role - so no one else will think they should!!
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Reply to care4dad
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It might work to tailor communication to each sibling. For the least involved sibling, maybe a Facebook message or text message a couple times a week. For a sibling who is more involved or interested, phone calls and detailed emails. Even if they're not super responsive, keep them informed, because you'll all need to make some major decisions very soon. I agree with others--keep a log of all the time YOU are spending on every aspect of their care, their money, their insurance, their property, etc. Sometime soon, you might be able to get a parent into a neurologist to do cognitive testing--these are paper and pencil tasks that a 10-year-old child could do, but a person with dementia can't. If you can make that happen, try to have a sibling present with you. Or maybe film it with your phone. Or maybe film day-to-day life and conversations with your phone. After years of my mother's "Mild Cognitive Impairment" and gradual slide into dementia, my brother still didn't absorb the depth of her disability until he was present in the room when a nurse did a cognitive evaluation for long-term care coverage. Mom could not say what country we were in, could not draw a clock, etc. My brother finally saw the reality.
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Reply to Beekee
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I've tried and failed many times (when I was CG for mother) to include my sibs in the week-to-week updates.

Nothing. I'd get maybe an "ok" literally, 2 letters as a response or in the most case, nothing.

You cannot force people to care or to even listen to you.

Trying to get 4 sibs to answer a group text about Mother's Christmas gift was like pulling teeth. All I needed was a simple 'yes' and a promise they'd pay their share. I actually added in the email that I would NOT put their names on the card if they had not paid me by Dec. 20th. One brother said he wanted to go in on the gift, but despite 2 extra quick reminders to drop the money off, mail it or use PayPal, he just didn't. I didn't deliver the card, and I did not put his name on the card. He's the YB that mother LIVES with. I will never see that $40, and this is typical for him.

I detested phone calls, but sometimes they were necessary as mother would ask continuously about all the other families. They were pretty much as ineffective as an email, except they could tell I was upset.

So the way we left it from a family meeting was that YB would write an email to all of us and let us know how mother was/is.

He never did it, not once in 3 years.

If people want to know how their folks are, they bother to make the effort to get in touch. I know this seems very sad, but I am experiencing this with my own son who is angry with me and withdrawn all contact with me. I guess I will know for myself how it feels to be estranged from a child. Right now I am heartbroken, but I guess as time passes, I'll get used to it. Would he respond if one of his sibs looped him into an email about my ongoing cancer battle? No, and you couldn't make him.

Sorry--this is a touchy subject in my family.
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disgustedtoo Jan 1, 2020
:-(

So sorry that you have to go through all this on top of cancer treatments.
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CaringBridge is an online blog that folks have used to keep family and friends up to date on those they care for. Granted, most of the people I know use it for family/friends with cancer or long term I the hospital, but it seems this might be ideal. I send letters to my family monthly to keep them in the loop since I have family that don't use email. Texting all the goings on is too lengthy.

As for how to approach the communication. I just let folks know that this is a easy way for me to connect. I don't worry about inducing guilt. I just "share" whatever is going on - good and bad - 'cuz we're family and should be loving humans.
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Reply to Taarna
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There is a website called "Caring Bridge" that you can get on and set up a place that you can provide info regarding Mom's condition and it allows your siblings and friends to both read and post comments. If your Mom is still capable you might consider a facetime phone call with siblings. I would not be concerned about their guilt feelings after all she is their mom too. My mother was in a memory care unit for a year before passing and our family including grandkids and great grandkids visited several times during the year along with our weekly and daughters weekly visits. On a couple of occasions my daughters made one of their grandmother's favorite meals and fed the entire facility which housed 12 in that particular building. Bottom line your siblings can be equally upset not to know how their mother is doing. And there will be a day that she nears death and if reasonable they should be informed so they can make a final visit should theyt choose. Hope this helps.
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Reply to piper2104s
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Riverdale Dec 31, 2019
Caring Bridge was used by a relative of mine whose mother had cancer. She started it early on and was very prompt with updates. It went on even after her mother eventually passed on. Before she did she responded to many. I think the important issue is that the person who sets it up has access to pertinent information regarding the individual.
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Ha. I live with my elder parents and gradually although my chauvinistic father thinks he is ever so independent, their constant needs are escalating. He is 102 and deaf but very capable at some tasks; mom is 97 with dementia and can be somewhat functional with limitations and needs supervision and observation. Our only family is really my only sister out of state. She makes phone calls to dad once or twice a week. Rarely calls or emails me to say "hi, how are ya?" On the flip side I will update her with brief emails or whatever regularly. Even a darn email with "oy" as the only response is better than feeling you are left all alone with this stuff and no one cares, not even your sister. So is it worth your time to even bother? You might stay tuned in to a company called Curadux...they are thinking of doing something along the lines of elder care that will give families a place where updates can be posted and access to those involved in one spot. And you didn't ask, but can I suggest that you might want to keep a log of all you're doing and when and the time involved for your family. Also contact a certified elder law attorney and see about a caregiver agreement if your family is cooperative. Try to get one who works on a flat rate per task. And realize that the family might not care so long as someone responsible like you is looking out. They have no idea how lucky they are.
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Beekee Dec 31, 2019
I agree, keep a detailed daily log of what YOU are doing, and the many hours it takes. Just the medical and insurance issues are incredibly time-consuming. People don't realize that until they actually do it. Feed this info to the siblings on a regular basis, whether they respond or not, so that when you take some $$ for your time and effort, you can say, "I already informed you, too bad you didn't read the email." An elder law attorney would be on your side.
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I'm not sure how far away your siblings are, but, if you could manage a visit so the siblings could come for lunch or desert one day a month, they could come and see your parents themselves, it might be helpful. It would give you a chance to fill them in on concerns too, if they are open to it. Or you could tell them in person that your parents are really needing a lot of support right now and ask that they contact you monthly to get updates. If they want to inquire they will. That leaves it up to them. I have found that even explaining things in person on multiple occasions to siblings generally doesn't heed much interest. It's like they file it away and continue on as usual. lol Seriously. Siblings who want to know will inquire and find out. They may still remain oblivious though.

If you are the primary caregiver now, I'd focus on doing what you think is best. I assume you do have their signed DPOA and HCPOA.

Just curious. Why do you think your siblings would feel guilty?
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DaintyBess Jan 1, 2020
I have a years long list of incidents surrounding my parents' ability to take care of themselves, which indicate to me that my siblings need to stick their heads in the sand and pretend our parents are fine. I truly believe they care a lot about our parents, but are busy with their own lives. Denial is easier, because acknowledgement means they have to disrupt their own plans and "do" something. Sometimes I have to roll my eyes at their excuses, but I honestly get it. I would rather go on with the plans I had a year ago too, but reality is that when things go badly my parents call me...every single time. My other siblings live 700 miles away.
My sibs do call my parents at least every week, sometimes more. I made sure to let them know in my first official report this week that those calls make a big difference to our parents, cheering their days and making them feel more at ease.
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I detest Facebook, but so many people are on it. Private group messages might be the way to go if they are all on FB. When my cousin was dying in hospice, her sisters sent private messages to her closest relatives telling us what we needed to know and generally keeping us abreast of developments and later, arrangements. It worked.
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disgustedtoo Jan 1, 2020
"I detest Facebook..." I have no use for it, have never signed up for it and never will. So far email, text and if necessary phone calls have worked fine. What did everyone do before Facebook??

I am not aware of the other tools people have mentioned, but being wary I would worry about security on them (not that texts or emails are better!) Just be sure to leave out any sensitive information when posting on any tool/app.
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First of all, the fact that your parents very recently moved in with you, you can expect that they may be more confused or irritated than usual for awhile. How long is anyone’s guess. Change, especially moving, is very stressful and disorienting for all of us, especially the elderly.

I have 3 sibs and we recently moved my mom with some dementia into an IL facility. My sister and I both live in the same city as our mom, both brothers out of state. I’ve been coordinating doctors, a HHC coordinator and various activities for her. When there’s been any decision making to be done (such as the move), we text to find a good time for all to have a conference call by phone. We do the conference call and one of us is the designated note taker. We’ve often needed follow up conference calls. I’ve also been keeping an ongoing Notes file on my computer, listing concerns and doctor visits: purpose of the visit, outcome, follow up and suggestions by the doctor. I’ve sent a copy of the Notes via email, usually monthly, to my sibs just to keep them in the loop. I’ve had positive feedback from this method, and if any of them have further questions or concerns, we can talk by phone, text or email each other. By using Notes or even emails, we have a written history which I find valuable b/c I simply cannot remember for very long, all the details of various doctors appointments or issues going on with our mom.

Good luck to you, give your parents and yourself some time to adjust.
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disgustedtoo Jan 1, 2020
Great to hear from someone who has siblings that not only care but work together!! So often this isn't the case... Hope that this continues for you! It is nice to know that there ARE good siblings out there!
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I am a believer in the written word, even if sent to those who may ignore it.
Maybe once a month or so I would send out an email with a nice simple greeting followed by "Just wanting to keep you up to date on how the folks are doing:"

Then just bullet items you want to share. Avoid paragraphs and a lot of verbiage...stick to the basics:

*Mom tries to call people using the TV remote.

*Dad is yelling more and using cuss words when he gets upset about something.

* Dad denies having breakfast when he has it every day.

*Mom forgot to turn off the stove Tuesday when boiling a couple eggs.

Include updates of dr visits, too.

The emails will be a log of what's going on and eventually a justification of the need for a higher level of skilled when and if needed.
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Reply to jjmummert
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Grace1122 Dec 31, 2019
Many people have recommended Caringbridge. I use CareZone. It's a great way to journal and log doctor contact information, appointments, allergies, etc. Of my 3 sisters, only 1 reads the journal entries. Her entries every now and then really makes me feel great.

Even if she didn't respond, it keeps me organized, and I feel better after writing a little bit every few visits. My mom has alzheimers, and it helps me keep track of some of her physiological and cognitive changes too.
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I answered any and all questions other than for financial matters if my sisters asked. I kept them up-to-date on Pop's medications and what they were for.

When they inquired into his $$, I told them it was not my information to share and they had to ask Pop. I only told them that he was able to support himself and needed nothing from us children financially.

If you email with your siblings, just answer the questions put to you. Ditto on texting. If they are interested, they won't wait for you to give them a report, they will ask.

When my DH started his decline, I sent an email monthly to alert his 3 children on his condition. Only 1 ever replied. Looking back, I should have waited for him to ask - because today I realized, he never asked about his own father.

But you should have heard the crying after he passed.
Too little, too late, as he was now gone.
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Reply to RayLinStephens
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My sister and I share in town care for our mom. My brother is out of town and we were texting daily updates in a group thread. It was important for us to let him know the situation, and in a way it helped him share the burden of how hard it is to care for her. (She is difficult and abusive with dementia.) He remains unsympathetic but at least he’s informed. Neither of us had the time to do lengthy updates via email.
best wishes
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Reply to gemmab123
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Whining? What makes you think you are whining? Your parent's conditions are only to get worse. Can you send out an email to your siblings maybe twice a week describing , updating your group on things that are happening? Maybe attach pictures and short videos? Keep it short and straight forward. keep your own thoughts, opinions and emotions out. Maybe add a link to each email about your parent's problems from the Internet. This could be valuable form a legal standpoint. If there are finances involved this is another story.
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Reply to doctorno
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I would update my husband’s siblings (early onset) with periodic texts and a picture. It might be an update after a neurology appt or if he was having fun doing something. When he was able, i would try To get together with them for brunch, etc so he could see his siblings. I would also have him call to say hi (one sister always called weekly) When he went to memory care, had a hospital stay, and now a nursing home, I would update with a status and usually a picture. He’s in late stage now and the picture usually tells the story. Whether they choose to visit is their decision - (all are local) but I feel I’m doing my due diligence and they have thanked me for the updates. They have also told me they feel all the decisions I’ve made have been made with love for their brother. His decline has been very rapid this year and I try to be upfront so no one is “surprised” - he’s under hospice care now. Best wishes.
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Reply to Franklin2011
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Oh and about siblings, good.luck. There is no answer. I know that as a fact. Do what you think is best for you and your parents and see how they respond. If no one wants to hear, that's their issue. My heart is broken by my siblings' behavior and I am not a quiet person but they made their choices and have to live with themselves and their kids don't learn a thing. So please go with YOUR instincts. Even ask for their help, company, even to be there for you to talk to. You reach out and you will know. Fact.
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Reply to Gemini5216
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I just want to say that removing your parents from their home will have a dramatic and almost immediate effect on behavior, pbysical, mental, emotional. They are out of their element and had their independence taken away. For Their safety but a.slippery.slope. Try to include them in daily activities, and tasks. Make them feel needed and that They have choices and it might help. AnD dad might make mom a little more stressed, effecting her memory, and vice versa.
Please know you are protecting them but it's hard for them with the role reversal. Hugs to.you all and have patience
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Reply to Gemini5216
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Keep them abreast anyways. Don't think of it as making anyone feel guilty but Included in what you are Doing..Even ask for Nice Advice to Make them feel Included.xx
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You know emails can be so impersonal. You can't see people's faces and if you don't word something just right, someone takes it the wrong way. It even happens on this forum.

My suggestion would be to call each one of them. Ask how they would feel about maybe a weekly/monthly text. Tell them you have seen things in your parents that no one seemed to see before. You r not trying to guilt them just don't want them to have any surprises if they should come to visit. You won't make it lengthly maybe sometimes you may not need to text because its just same old same old. That way they hear the inflections of your voice. If a few say thats Ok don't need any updates then you just say OK thats why I am asking.

Don't tell them how you are handling things. If they ask be honest, more than I expected but its doable. Or, if u think the sibling is really concerned you could ask if they could care for parents while you and hub get away. Or run an errand. Less info the better.

My BIL was POA and lived 7/8 hrs away from MIL. We knew she was not going back to her house. So for the two weeks we were there we were cleaning out her house to be sold. BIL had hired someone to get things together and have an estate sale. When SIL would call I'd tell her what we had done to help get ready. After I had done this one or two times I was told point blank that she really didn't need the info. She is a nasty person on a good day. I wasn't trying to make it sound like "look what we r doing" just wanted her to know for the lady running the sale.
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disgustedtoo Jan 1, 2020
I like JoAnn29's suggestions. A simple phone call first (plan ahead what you feel is most important regarding the situation/changes noted) and then you can ask whether they want to be updated, how often and what triggers. Sending weekly updates may be overkill, especially when there may not be changes every week. Keep tabs on things and keep your own notes, for yourself and the doctors (and CYA!) If the siblings say okay to periodic updates or don't say no, send it however you choose. If they aren't reading it, that's on their plate. At least you tried!
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I emailed my brothers. I suspect some emails went unread. I wanted them to know how my mother was declining, what I did, and how much time it took.
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Reply to CTTN55
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I started off sending my sister lengthy, detailed emails about what was going on - the good and the bad. At first, when it was a crisis because our dad had been badly hurt in a fall, she responded and asked questions. She sort of quit responding as time went on, though, and things became 'normal' so... I quit emailing as much. If there's something I think she needs to know, I'll tell her. And if she wants to ask questions, I'll answer them.

She does, say, though that she feels guilty she can't be here doing more and has offered to buy whatever our dad needs. I take her up on that. If he needs something, I tell her and she buys it. He gets what he needs, I get what I need, and... I guess she gets what she needs?

What works for me, though, is going with what feels right. I think you'll find out from your siblings just how interested they are, and then you can adjust accordingly. And, in those moments when you can't believe they aren't more interested, you can drop a subtle comment on just how much 'needs' doing, not even how much 'you're' doing.
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Reply to feelinglost8
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Try not to "report" every bad thing, or decline.
Give them time to adjust to a new environment. Moving is difficult on elders.

If you have kept in touch through your parents, be sure they have their own phone, and support any efforts to continue this family tradition. People can tell when talking to someone they have known for their whole lives that there are glitches or a decline in their parents.

Don't be surprised if siblings call you up to check out a complaint that Mom might have exaggerated and shared about you! (Not everyone declines in this way, but it happens). There are so many reasons for protecting their independence, dignity, and privacy. And finding a way to continue to have your own privacy.

Guess I am going to recommend this to you at first:
THE PHONE WORKS BOTH WAYS.

Whenever I would start asking, my family member would go underground with information. If I did not ask, she would willingly share. And, as always, there is the "Why don't you ask him yourself", a good idea.

Unless siblings can help out with caregiving, sharing should be on a need to know basis. imo.
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NeedHelpWithMom Dec 28, 2019
So true! I feel the same way. The phone does work both ways.
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What kind of relationship do all of you have? You chose to care for your parents. Your parents are in your home. You are the child who will see the day to day happenings. Will your siblings interfere in any way? Disagree with how you decide to handle things in your home? Have they inquired how your parents are doing? How do your parents get along with your siblings? How did you end up being your parents caregiver?

I hope all of you have a good relationship communicating with each other. It can become complicated. Friction can arise. If you have never had a strong relationship with your siblings they may not be empathetic to any struggles that you encounter. You may even encounter criticism from them. Not saying that will happen but it does in many families.

Should you decide not to be caregivers for whatever reasons and wish to place them in a facility and your siblings object and try to make you feel guilty then tell them you are the ones who have been with your parents and they haven’t.

Send an email, text or call if you like to give updates periodically.
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Reply to NeedHelpWithMom
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Dainty, are you the PoA for your parents? When I started to manage care for my in-laws I group emailed my brothers-in-law whenever I did something or made a change or a decision or spent money, and everyone got the same info at the same time. I never wanted anyone to say "I didn't know such and such" and I wanted to be above reproach since I was spending the in-laws money for their care. I didn't care if the recipients read the emails, but it was their parents. It was also a great way to indirectly let others know how much work it was (I never knew it was going to be that involved). Not that I wanted them to feel guilty -- I volunteered to do the work. But we were all on a learning curve and I didn't want to make decisions alone. Those who were out of town were very willing to pay for things or services when they realized the effort at our end. The emails were never whining, just information or a request for input or action. It worked great, even in the blended family situation. I highly recommend it.
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DaintyBess Dec 28, 2019
Thanks so much. I have been thinking about it this way myself, but I worry. Not all of my siblings see life the same way. Still, we don't know what we don't know... and just as importantly they don't know what I am learning. I can't say all of my siblings can be trusted to be supportive in all circumstances, but I don't think it will help for them to be in the dark either. I don't think I'll have to ask for financial support for now, but the parents will be paying rent, which is fraught with other doubts and details which I think my siblings should know about. (More to it than that, but that's for another post.) I appreciate your advice.
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