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?
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...
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.
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.
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.
So sorry that you have to go through all this on top of cancer treatments.
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.
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?
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.
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.
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.
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.
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.
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.
best wishes
Please know you are protecting them but it's hard for them with the role reversal. Hugs to.you all and have patience
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.
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.
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.
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.