How can I set boundaries regarding my caregiving abilities without being labeled as the sibling who doesn’t help?

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My mother is at a moderate stage of vascular dementia. She currently lives alone, but we're not sure how much longer that can last. At this point, my sister has been allowing my Mom to babysit her 5yo daughter, 3 days per week, much to my chagrin. Sis is obviously in a certain level of denial because she and mom are cut from the same cloth; they make decisions from a place of emotion, rather than logic. While I recognize that emotion is a significant factor, we are grapling with some saftey issues (driving, etc.) that need to be addressed. My sister claims that she does all the work, so she gets more "say" in the decisions. By work, I mean she is using her 5yo to report back to her what Grammy has been doing that day. Sis also fills mom's meds once a week. Because she's more emotionally connected to Mom, she's able to influence mom as well. My brother and I have offered our help in any way we can, but essentially, our help is refused or even discourage if it's not done the exact way Mom and sis want it. I feel like I'm beating my head against a brick wall.
I'm not willing to sacrafice my marriage, sanity, job, and kids (1yo, 6yo) to live in Mom/Sis's emotionally draining denial. When I establish boundries for the kind of help I'm willing to provide, I'm told by my sister to "just get out of it!". I'm willing to put action behind my opinions, but how am I supposed to provide care when I'm being sabotaged? My sister, in her denial about the severity and reality of Mom's dementia, will agree to certain conditions with my brother and I. When we try to put them into practice, Sis will ultimately do whatever she wants and just not tell us about it. She purposefully leaves us out of appointments (tells us at the last minute) or siutations with Mom because she doesn't want us to weigh in. Then, when we do try to help, we are berated for not helping out enough!
I see so many articles about how to get "deadbeat" siblings to help. What about those that do, but are at the mercy of a dictator sibling who wants to rule under emotional law?

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Top Answer
I"'m not willing to sacrafice my marriage, sanity, job, and kids " forgive me for what may sound a little heartless here but that sounds awfully selfish. Actually you sound like my sister. That is your mom and taking a backseat because you have a sister that is forcing you out of the front is a lame excuse. Just my opinion and I don't want to start an arguement by any means but that is your mother too and if you see something that doesn't seem right it is your job to step in and take action. Its not about your "sacrafice." These are our parents and sometimes, even when one sibling may be in denial, there comes a point when you have to step in and take action. How I wish my sibling would take action but unfortunately, like you, she is unwilling to "sacrafice" her sanity or time to help out. Good luck and forgive me for sounding bitter but as a sole caregiver I am very bitter to any kind of selfish presumptions.
GOO:

The only one I have a bone to pick with is your sister for using her daughter as a pawn in this teeter-totter sibling squabble. (I wouldn't be surprised if she grew up to be a journalist.) Especially when she knows your Mom is mentally unstable and shouldn't be babysitting for anyone in the first place.

I don't see anything wrong with your priorities, and I certainly don't blame you for wanting to have a life and putting your husband & children first. I would, however, call for a meeting of all the siblings to figure out how best to share the responsibility of caring for your Mom. Of course make sure she's not present. All the bickering, name-calling, and hissy fits will tear her apart. I urge you and your brother not to gang up on Big Sis, and try to reach a compromise that ultimately benefits Mom. If she's relatively happy and comfortable, eventually it'll trickle down to you.

Find a way to squash the beef with your sister without being crude, crass, and obscene. After all, this is really a family problem; not a sisterly power struggle.

Good luck my friend. Don't take no for an answer, and remember that self-sabotage is not an option.

-- Ed
I instinctively know my comments are not going to sway anyones feelings or bring any aha moments here, but, I, as the odd sib out, was constantly belittled, put down, criticized, and on and on, for not doing the "right thing" by our dad... No, I did not jump when my oldest sib said froggy, I did not choose and did not allow myself to be cornered into being sole caregiver of our dad... but my oldest sib, the one who thought she ran the universe, did..... I sat and watched the dynamics of that situation for many years.... and I don't remember who said it, but the dynamics between us sisters was formed long before our dad needed care...... and my reality was, they thought it was going to be the same after we were all grown and our dad needed care...... what they don't know, is how many times I DID do many things for him, took him places, went and sat with him at the hospital for one more of his "cry wolfe" dramas...... I didn't find it necessary to tell them anything... and he never would have told them I did because he was the primary game player in that drama.... I could stand back and watch it with detatchemnt..... and do things I could, when I could....and I know my story is not the same as the question asked.... what I am trying to say is, not every time a sib does not do their "duty" in the eyes of others, it is not always as it appears..... I could not imagine setting down with my oldest sib and trying to share with her what I felt my role should be in his care..... I would have been talking to a wall, there was no compromise in what she felt was "right"... she had been rigid as long as I could remember, why would it change for our dads care.....Her RIGHT was not my RIGHT, but why waste time and energy on that futile conversation.....
My personal experience has shown me that some of the ones who are so angry at not being "helped" are simply upset because they do not know how to say NO....or think outside their own perception of how things SHOULD be done.... My oldest sib wasn't angry because I didn't help with our dad, she was angry that she couldn't do the things I was doing with out feeling all that debilitating guilt and shame.... I went to counseling for years to get past that, and she resented my freedom of will, my acknowledging my own limitations with our dad.... they needed his APPROVAL, I did not..... so with all that being said, to simplify my words here, there is usually such and undercurrent of sibling mess going on, that arguing or judging about a parents care has nothing to do with anything.... one of my favorite sayings is , " what is going on here, is not REALLY what is going on".... it always goes much deeper than who didn't take care of dad that day.....
And one of my observations on how we handle sibs, is how we respond or react to things said on this sight.... If someone jumps to conclusions and judgment, it pretty much says how they are in the world.....Sure we are all tired, edgy, and all the other words we use to describe ourself on here, but we are here to learn from each other....take what you need and leave the rest..... there are many voices on this sight, hunt and peck until you find some one that agrees with you, it's time consuming as there are many many people on this sight, but hey, we might all just learn something about ourself in the search....
To answer some of the questions:
Who cleans mom's home? ~ Mom
Who prepares meals? ~ Mom
Who takes her to church or the community center or to senior activities?~ Mom is isolating herself to stay in denial. She played cards years ago, and I've been trying (in vain until this week) to get her to pick it back up. She uses the babysitting as an excuse.
Who does her laundry? ~ Mom
Who sets up her appointments? ~ Sis sets up medical, I set up financial and legal (all three of us attend all these appointments when possible)
Who pays her bills and monitors the checking account? ~ Me
Who sits and looks through scrap books with Mom? ~ Sis and Me
Who plays cards with her? ~ See above.
What are the things that you can do, to mother's specifications? What are the things that your brother can do? ~ When we ask, Mom replies with "I'll take care of it. Don't worry about it." So we have to give her time to handle it, and it never gets handled. We've used a mediator to assign tasks to different siblings, but things either don't get accomplished or they get accomplished very slowly.

Do you think it is still safe for mom to be babysitting a 5 yo? If not, what are your concerns? ~ No. My Mom has made impulsive decisions to walk my neice to a local shopping mall, across 4 lanes of traffic, after being told not to. My Sis has stated that she needs her 5 yo to "report back" what Grammy is doing on the days she's there.

Is mom still safe to drive? If not, why not? ~ Mom has been evalulated twice for driving and was borderline both times. She's been lost 3 times (that we know about) and has had three non-injury accidents in the last 3 years. She also bombed portions her last congnitive exam, including the viso-spacial test that is key for peripheral vision.

To joym, the difference between my sister and yours is that I'm activiely participating, trying to find resolutions to Mom's needs. However, everytime I try to plan or carry out one of our previously made decisions, my Sis seems to put on the brakes on our progress. For example, we are trying to get mom to ride a shuttle regularly so that when we take the keys (which I think should've already happened) so she has a transportation alternative. I took off work to make sure she was able to use the shuttle. I made sure she arrived at her destination and made sure that she made it back home. I've been the one calling to make all the shuttle appointments. Grocery visits are one of mom's primary concerns. I suggested to my sister that we alternate Sunday's, so that 1.) I can plan around the days I need to take mom to the store, and 2.) it doesn't just fall on Sis to take her, since she lives closer. Sis balked at the idea and doesn't want to set up a schedule. I've got other things in life that need to be handled and can't drop everything to take mom to the store. My kids and husband need me. I'm the primary breadwinner. I don't think it's too much to ask that we set up a schedule for this stuff. But my Mom has always been more spontatneous when it comes to the grocery, and sis is too. This is the kind of stuff I'm talking about. So, respectfully joym, I'm nothing like your sister.
We've worked with a mediator, we've set concrete deadlines. I understand flexibilty needs to be accounted for, however, my sister communicates NOTHING to us about WHY we might need to change goals/deadlines. The other frustration is that I feel these stall tactics are keeping Mom and Sis in denial, and I feel like we're wasting valuable time. Mom only has a limited amount of congnitive time left. We're wasting it by not getting the most out of it now. Instead, Mom's in denial and isolating herself in her house with a 5yo who worries about Grammy. When we push mom to discuss some of the modifications we need to make, she shuts down and starts talking about a "pill" that will kill her so she can avoid all this. Her neurologist recommended that she see a psychatrist after talking about suicide in her last appointment, and that's never been set up by.....my sis. I finally set up an appointment with a counselor that my Mom saw years ago.
Thank you everyone for your suggestions and comments. Since I originally posted, we've made some progress. We've taken the car and sold it. That was the battle I choose to pick, and it took over a month to get it done, but it's done. Things with my sister have deteriorated, however we are trying to work together as best we can to get things done for mom. Mom's seeing a counselor regularly and she's accepting the shuttle. The counselor is getting her to see that embracing these changes will keep her independent longer than if she stays in denial and pretends like nothing is wrong.
Most of the communication has been going through my brother. For now, that's working well. Sis and I both have trust issues with each other; she doesn't think that I'm emotionally sensitive enough and may hurt mom's feelings, and I think sis says whatever she thinks we want to hear in that moment with no real intention of following through (or at best, she's promising to deliver more than she can handle). Sis does things on HER timeline, which in my opinion is not fast enough.
I'm working on not worrying about what she thinks of me. I know I'm doing a lot to help my mom. Our differing styles bring something positive to mom's care and fill a role that the other one cannot. It's unfortunate that caring for mom has destroyed our friendship, but I think we've discovered that we are VERY different people.
What you have here is a difference in personality and working style. I understand that completely because I am the logical, planning, type. My Mom and sib are the "run-right-into-the-wall" and then decide that it hurts type.

It took me a long time to figure this out so here it is: just back off. Do what you can, offer advice, visit as often as possible, but let the chips fall where they may. Continuing to get frustrated over the rug being pulled out from under you will just ruin your health and, in the end, they will do what they want anyway.

My big concern would be the driving issue. Take that one battle on until you are sure that she is no longer driving. She may end up losing her life and taking another along with it.

Here's what will happen in the future. Things will get to critical mass, then they will call you to "fix it." Decide at that time how much you are willing to do.

In the meantime, look for ALFs or other placements for your Mom because it sounds as if she will need one soon. If you sis is not a planner, at least you will have this info when the time comes. (btw, has your family discussed "what happens next?")

I know how frustrating this is, but two things are absolute: you will not change them and you cannot please them.

good luck

(PS: perhaps your sister sees your "boundaries for the kind of help" you are willing to provide or issues about "sacrifice" as wanting to do things on your time...not when they are needed. Perhaps try asking, "what can I do to help" and do what is asked. Also, since your Mom lives alone, it does not stop you from dropping in to check on her or to do things for her. Just a thought.)
I went through the same thing with my father in law as to whether he should be driving. I found a fabulous place called Marion Joy Rehab center in Wheaton IL. They work with disabled people to get their licenses. They also do evaluations on people, seniors, to see if they should still be driving. We needed a doctors referral, I asked the doc to refer him without involving us. Most of it was covered under medicare.
It is a comprehensive test that lasts 2 1/2 hours. They test on cognition, peripheral vision, range of motion and do a 45 minute behind the wheel test. After this they send paperwork to your doctor with their recommendation, whether it's something they can help you work on or if they recommend "driving retirement".
It's sad to see them lose their independence but the emotional and financial cost if something had happened while he was driving wasn't worth the risk. It worked out well for us since then Dad could be angry at someone a good distance away from us and none of us had to be the bad guy by taking his license away.
Jeanne I think we are going to have to agree to disagree, I take it you yourself have never been a caregiver since you appear to be so pro-inactive and so anti-care. I honestly don't know why you are even on this website since you don't seem to think anyone should be taking care of their parents. I hope you never need care yourself because with that thought process it wouldn't surprise me if no one helped you. I'm done with responding. I've got caretaking chores to tend to. Goodbye.
It seems to me there are three sides to this - yours, your sister's....and the "truth". We all bring our own baggage to these situations and, as siblings, we behave the way we behaved growing up, while competing for our parents' love and attention. A great book about this phenomenon is "They're Your Parents Too" by Francine Russo. I am willing to bet that your sister is the eldest child (I could be wrong) but she is most certainly the one who is the closest to your mom. She identifies with her and is empathetic about what it would feel like to lose her independence. I am in a very similar situation, with two siblings I love very much but who barrage me with "suggestions" and "ideas" that almost always involve having our mother give up more and more of her independence. Their motivation for this is to have our mother cared for by outsiders so that they can continue to live their lives as they always have, when our mother was more independent. I, on the other hand, end up doing all the work and caregiving, finding social activities for our mom and providing her with all her needs including shopping, cooking, doctor's appointments, etc. Their feeling is that because I am not taking their "wise" advice, I have to suffer the consequences and take on the majority of caregiving. None of us knows best and these prejudices all come from our belief systems that were formed growing up. I don't deny that your mom may be more impaired than your sister is willing to admit, but take a look at the entire situation, including your sister's feelings before digging in your heels and proclaiming that you will not allow your marriage and kids to be sacrificed. We all have to play our roles in this difficult situation and saying that you are not allowed to help is something I just don't buy. There are many ways to help - and they aren't all going to be on your terms.
Who cleans mom's home?
Who prepares meals?
Who takes her to church or the community center or to senior activities?
Who does her laundry?
Who sets up her appointments?
Who pays her bills and monitors the checking account?
Who sits and looks through scrap books with Mom?
Who plays cards with her?

(I'm thinking of the things my mom needs from her daughters.)

What are the things that you can do, to mother's specifications? What are the things that your brother can do?

Do you think it is still safe for mom to be babysitting a 5 yo? If not, what are your concerns?

Is mom still safe to drive? If not, why not?

If sis is the one who sees mom the most often and has the most interactions with her, certainly her opinion should be taken seriously. But doing someone's laundry does not necessary make one the best authority on whether that someone can still drive safely, if you see what I mean.

What if you said, Sis, I'm going to take Mom and my two kids on Thursday afternoon outings. I'll pick her up right after school is out, and we'll feed the ducks in the park, or visit the science museum, or go for ice cream cones. I'll have to try it a few times to judge her stamina, and then we'll decide on a regular return time. Or if you said, "Mom, I'd like you to come have dinner with us once a week. Would you prefer a weeknight or the weekend?" Can you arrange to spend some time with her each week, to fit your own schedule? How about your brother? Could he play checkers with her one night a week? Take her to a movie?

What kinds of things do you agree on and then Sis won't put into practice?

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