How do I support my sister taking care of Mom?
October 15, 2014 10:33 AM   Subscribe

I need some help being practical and supportive of my sister when her decision fills me with such great sadness. My youngest sister is now 18 and possibly graduating high school before the end of her senior year, which makes me very proud. She told me last night that she's wanting to become our mother's full time caregiver. This upsets me.

I've asked about my family issues here before, so I'll try to keep it brief. Shortly after this question, Mom remarried the step-father. He's still there, and my other sister and I are pretty resentful of it, though I hear things are calmer than before. I'm still pretty much on low-contact with my mother, but things are at least peaceful when we do see each other.

My mother's physical health is not great and is slowly deteriorating. She's had some bad falls and my youngest sister, who still lives at home, worries when she's at school or work and Mom's home alone. Step-father does contract manual labor and is out of the house a lot too. Of course when he is home, his helpfulness varies from commanding/demanding (ie shouting, "Sit your as down! I'll get it!) To neglectful and ignoring her.

I asked my youngest sister if they'd considered getting a home health nurse. Her response was "We got evaluated for one and they told me that I had everything under control enough to where she doesn't need one" I don't understand this, and my sister didn't give any more detail.

I'm trying to be practical and supportive, I really am. I've sent my sister links to info regarding Medicaid Cash and Counseling program and the Texas Community Attendant Services program. I've tried to stress the importance of having information my mother has never been forthcoming about (ie advance directives, powers of attorney, wills, etc).

Emotionally, though, I'm pretty torn. On the one hand, at least someone's stepped up to take care of her. On the other hand, this is the sister who, until the last year or so, has always been excited go to college in the city I live in. As a little girl, she wanted to be a veterinarian or a zoo keeper or something. Through her first three years of high school, she'd decided to go to cooking school. She wanted to be a pastry chef.

As the oldest, (and likely most damaged) I've always wanted my sisters to have what I didn't. I've cheered them on and supported their dreams. I've spoiled my other sister's kids and helped her find homeschooling resources. That sister didn't choose a life I would have, but she's always wanted to be a stay at home mommy, and I'm happy that she's able have that.

My youngest sister has the potential to get and do and be anything she wants, but I can't wrap my head around her wanting to take care of Mom full time. I can't help but suspect that Mom's manipulated her. Mom's always cried about having been a bad mother, and as I and my other sister moved out, she pushed the guilt trip. Apparently, we only moved out because we hated her. We were adults with adult lives. A common phrase on parting is, "ok, abandon me again". My mother has bipolar disorder and I suspect narcissistic personality disorder who always plays the victim.

My youngest sister has been the only daughter at home for the last 4 or 5 years, so I know she's had listen my mother whine about how her other two daughters hate her and abandoned her. Now that her health is actually getting bad (she can also be a bit if a hypochondriac when it suits her), I'm sure the guilt is weighing on my youngest sister pretty heavy she approaches adulthood.

So I guess what I'm asking for is two-fold. How do I provide practical story for my sister. Do have any resources I can pass on about being a parent's caregiver? How do I deal with feeling like my mother has finally "won" by manipulating my sister to never leaving her side?
posted by MuChao to Human Relations (18 answers total) 3 users marked this as a favorite
What about an in between solution to help your sister 1) reduce the anxiety about your mother and 2) get her to attend school?

I would discuss what would make your sister comfortable to have her mother left at home, if even part time (and only she can answer what that is). But let's say that she wants someone there 24 X 7.

What about helping with some of these other steps?

I've sent my sister links to info regarding Medicaid Cash and Counseling program and the Texas Community Attendant Services program.

This to me would be phenomenally challenging for a teenager, let alone an adult who has whatever challenges. I don't know if you have tried this yet, but there are lawyers who can help facilitate getting access to medicaid/medicare (and they take a percentage of what the client gets). But it might help them navigate the situation and have money coming in towards health resources and care.

If your sister wants someone there, what about helping out financially (only a few hours a week) with paying for a home care worker? Then your sister can go to school during that time. I suspect once your sister sees what college is (beyond the high school ho hum stuff) might be motivated to compromise and have a piece of both worlds.
posted by Wolfster at 10:46 AM on October 15, 2014 [3 favorites]

Your sister is dealing with reality as she experiences it. Her mother needs care. If her mother isn't prepared to participate with advanced directives, etc, your sister can't make her. If your sister doesn't have the ability to advocate for home care, she can't magic up the skills to do that.

What I would suggest is that you help your sister remove herself from that situation for a bit. Maybe she'd like to come spend Christmas with you? It's possible that if she's removed from the dynamics of that house and asked "If taking care of mom wasn't an issue, what would you want to do next?" she might be able to look beyond the overwhelming, immediate need of your mother for care.
posted by DarlingBri at 11:39 AM on October 15, 2014 [4 favorites]

Have you asked your sister how long she imagines this situation will last?

Have you talked about the fact that stepdad is still working?

I ask because it's possible she thinks her staying is inevitable and the role of caregiver will just "be over," like high school, at some point in the near future.

(As far as damage goes - has you sister had the most time alone with your mom? The other two sisters left - which is natural but does mean she was left with mom.)
posted by Lesser Shrew at 11:41 AM on October 15, 2014 [2 favorites]

Best answer: Good Lord. Your mother sounds like a malignant narcissist and your younger sister can't create the boundaries needed. You sister cannot sacrifice herself on this pyre. Please do whatever you can to get her access to support services that will help her to see the sickness and do what you can to get her our of that house and into the next stage of her life.

Have the home health nurse situation reevaluated with your sister not there.
posted by quince at 11:42 AM on October 15, 2014 [7 favorites]

Well, honestly, it sounds like you and your other sister have abandoned your mother in the sense that you aren't taking responsibility for what happens to her. I'm not judging, just describing facts as they are. You don't mention your middle sister at all. And I think the fact that you phrased this as "How do I support my sister" and not "How do I help with caretaking" say it all about the level of responsibility you feel. You openly admitted you aren't helping ("at least someone's stepped up to take care of her") Again, I'm not placing a value judgment on this, but pointing out that your younger sister may not exactly WANT to take care of your mom full-time but realizes that she is really the only one who will do so. Maybe she is just stepping up and doing what she feels is her duty. Maybe she is not willing to walk away. You can call that guilt or manipulation if you want to. But the reality of the situation is that your sister is not willing to completely walk away with the situation as it stands now.

How much do you want to help your sister? Just sending her links to complicated programs without taking part in helping to navigate them isn't really helping. I think the best thing you can do to help her would be to take an equal share of the responsibility for figuring out what happens to your mom, even if you don't really want to. And if helps you swallow the bitter pill of having to help someone you don't really want to, realize that you are helping your sister at the same time that you are helping your mom.
posted by unannihilated at 11:44 AM on October 15, 2014 [8 favorites]

Best answer: I wouldn't think about it the way unannihilated is putting it, though I see their point-- you didn't abandon her in any sense of the word. You left to live your adult life, it appears you've tried to figure out important issues with your mother in the past, and she refuses to cooperate. At that point, it's a stalemate. Your sister might not realize that yet. Thinking about it as abandonment or "your sister is the only one left" or your mother needs a full-time caretaker, and that has to be your young college-age sister, who will cripple herself financially by making this choice-- just no. It's a poisonous idea. I've been there, it's a sick system.

To support your sister I would do everything you possibly can to get yor mother set up with resources she needs-- not forwarding info to your sister but taking care of it as much as you possibly can, and helping your sister with her college applications as much as you possibly can. Do all the work so that your sister going to college is the path of least resistance.

I've been there, oh have I been there. I've had a very bright 18-year old sibling get pregnant instead of going to college, too. In that situation, to be honest, it broke my heart (sure we can't control the future, but my parents did such a crappy job of parenting that by the end of high school she had gone from smart, curious, cool kid to basically living on her own since she wasn't being fed at home, hating herself openly and getting up to all kinds of self-destructive activity, oh god I am still mad). However what's done is done and I was happy she wanted the child and I love her and support her decisions. For you, though-- this thing hasn't happened yet. Be there for her. Try to guide her. And if she makes the "wrong" choice, be there for her still, so when she realizes your mom is an emotional vampire, she has a way out.
posted by stoneandstar at 11:58 AM on October 15, 2014 [2 favorites]

I gave up a national merit scholarship at age 18. My sister didn't approve. I did it in part to stay with my boyfriend, whom I felt was my ticket out of the untenable situation I was living in. My sister always insisted that I should have tried to find some way to accept my scholarship and also keep the boyfriend. I think she was dead wrong. The boyfriend married me and joined the army. I was later diagnosed with a serious medical condition that I was born with. His military medical benefits meant I had free medical care that kept me alive when I really should have died. His career also meant that I moved a lot further away from home than my sister ever did, which helped me put down our family nuttiness, I think to a greater degree than she ever did.

At the time that I gave up the scholarship, my therapist said something about it being an affirmation that my family mattered to me or something like that. I didn't like that he said that but I also didn't know how to argue it. More than 30 years later, I look back on my choices at age 17 and 18 and I see a young woman trying to navigate not just a difficult family situation but also an undiagnosed and deadly medical condition. I knew I had health problems. That was not something I was unaware of. I spent a lot of years being treated like a lazy person and hypochondriac before finally getting a proper diagnosis. Getting a proper diagnosis was life changing in the most wonderful way possible.

I think at age 17 and 18, I was quite savvy and handling a very difficult situation extremely well. I think I found the only viable path out of a situation that really should have killed me at a young age. I think anyone who sees it differently from that probably doesn't know enough about the details to really have any right to judge me.

I tell that story in hopes of giving you some comfort and making the rest of my reply more palatable. It isn't intended to be hurtful.

In your previous ask (that you linked to in this one), you said you were the most parentified and linked to the Wikipedia page, which contains the following:
Two distinct modes of parentification have been identified technically: instrumental parentification and emotional parentification. Instrumental parentification involves the child completing physical tasks for the family, such as looking after a sick relative, paying bills, or providing assistance to younger siblings that would normally be provided by a parent.
Please note that I bolded the final bit about younger siblings. Basically, you trying to look out for your younger sibling is part and parcel of the mental health issues you have self-identified as having. My sister is 6.5 years older than me and the oldest of three kids. She probably changed my diapers as often as my mother. She tends to assume I am an incompetent idiot who cannot take care of myself. We are no longer close.

I will gently suggest that you consider the possibility that the "help" you desire to offer your sister is rooted in a) the fact that you were parentified to a significant degree and b) you are being extremely judgmental about a situation that you probably do not know as much about as you think you do. You indicate that you are intentionally on low contact with your mother, yet you feel more qualified than her or your sister, who is there all there time, to make decisions for both your mother and your sister.

I have done everything in my power to move my older sister out of my life because so much of her "help" makes me want to scream "Please STOP HELPING ME." She means well. She really does. But she consistently behaves like if I just did what she said, then all my problems would magically disappear -- because, I guess, she is brilliant and competent and a single email from her should fix everything in my life and, obviously, unlike her, I don't have real problems, I am just an incompetent dolt who fucks everything up. But HER problems, those are REAL problems and that's why they don't magically disappear. In the mean time, my difficult relationship to my mother has gradually improved and we talk more than we used to.

If you really care about your younger sister, you might try getting to know her better as a person. You might try leaving the door open in case she wants assistance from you at some point instead of presuming that you have both the right and obligation to decide for her how she should be living her life when the odds are high that you really do not know her that well at this point. Other than that, get yourself into therapy and deal with your own emotional reaction to her life choices as your own problem.

Yes, it is possible that your mother is merely crushing the life out of your sister. But I think you are viewing their relationship with prejudiced eyes based in part on your own dislike of your mother. And I think you are assuming you know what is best for both of them when the odds are poor that you really know enough about their situation at this point to have any good idea of what is going on.

Your sister may need help. But I don't think you are in a good position to offer her good help. I think you need to view your feelings about this and your desire to control them from afar as a symptom of the underlying mental health issues your childhood left you with and get into therapy to sort that out. If you develop better boundaries and get some of your issues sorted, you might be able to position yourself to be a resource for your sister to draw upon should she need and want it. But at the moment, it looks to me like your desire to help is highly likely to amount to merely interfering with her life.

I am so sorry you are dealing with such a difficult situation.
posted by Michele in California at 12:01 PM on October 15, 2014 [7 favorites]

Response by poster: A few clarifications...

The only help my sister directly asked me for was the information about how to get paid to be Mom's caretaker.

You are right that I don't have enough information. My sister has asked for resources and I have asked her for Mom's Medicaid status. I'm willing to help her sort through whatever systems need to be navigated. Most of this will greatly depend on Mom bring forthcoming with info.

I'm the oldest of three. The middle sister has a decent relationship with our mother most of the time, and a "sisters meeting" is being arranged, presumably be followed by a meeting including Mom. The three of us really need to be in the same page though. Hence, research.
posted by MuChao at 12:36 PM on October 15, 2014

Best answer: If you have not seen it yet, I will suggest you watch the movie The Butterfly Effect (be forewarned that it is a hard movie to watch). In some sense, it is about the process of discovery he goes through for finding out why certain decisions got made and how that led to the negative outcomes he kept trying to fix too late in the process. And then keep that in mind while trying to get to know your sister and the situation better so you can be effective.

If at all possible to do in a constructive way, try to remind your sister that she has a life ahead of her and being mom's full time caretaker is not laying the groundwork for supporting herself. She is unlikely to get paid for taking care of mom. Please do revisit the home health nurse question and try to tell whomever is assessing the situation that a) sis originally intended to go to college, so they shouldn't count whatever she is doing as a given and should, instead, be assessing how well your step dad has a handle on the situation and b) if they assume sis will keep on top of it, they are de facto trapping her there. (Whichever approach works best -- their conclusion that sis has a handle on it ...ugh.)

I will agree with what was said above that in order to help your sister, you need to help your mother. That may be a jagged little pill that is hard for you to swallow. I have swallowed a few such pills in my life. When it is hard, it might help to keep in mind that the goal is to help sis and helping mom is a means to an end.

Best of luck.
posted by Michele in California at 1:13 PM on October 15, 2014 [1 favorite]

She is unlikely to get paid for taking care of mom.

Oh also, this may be the case, but I do know a lot of people who get paid for being a home health aide to their own relatives in my home state (MN). I have no idea how the whole thing works but if she is set on it, it will be best if she also gets paid for it, of course.

Honestly, I think what your mom is doing is pretty indefensible, she should be acting like a damn parent, but it's obviously beyond her. I've been in this situation (as I mentioned earlier) but with a parent who also shook her kids down for money. We still love her, but parenting your parent is difficult and bullshit. I'm sorry you have to deal with this.
posted by stoneandstar at 1:27 PM on October 15, 2014 [1 favorite]

Oh also, this may be the case, but I do know a lot of people who get paid for being a home health aide to their own relatives in my home state (MN).

I just read an article about issues with caring for the elderly - I'm pretty sure the article says that Minnesota is the only state that allows this.
posted by zug at 1:33 PM on October 15, 2014 [2 favorites]

Best answer: Most states offer programs that use a Medicaid waiver to allow direct federal payments to family caregivers for their services.

Contact your nearest Area Agency on Aging for more information.

Also, sometimes, the smaller Residential Care Homes allow you to exchange working there for keeping your parents.
posted by rada at 2:19 PM on October 15, 2014 [1 favorite]

Best answer: This is a big decision in your younger sister's life. I would ask her about her reasons, and listen carefully. Really listen deeply for 30 minutes, 60 minutes, however long you can get her to talk. Do not interrupt to argue with her. If you interrupt her, it may be hard to get her to open up again.

See if it's a well-thought-out decision, such as "I've evaluated my options, and I don't need to go to college in order to go to pastry school. I'm very worried about Mom right now, so I'm just going to take a gap of a year, while I figure out what to do for my own future and for Mom."

Or if it's a decision that she feels panicky about, like "I literally worry that Mom will die. I panic every day that I'll come home to find her cold dead body on the linoleum, and I could've prevented it."

Or if she is over-optimistic, like "I think Mom is improving, so in a few months, she won't need me any more."

Then I think if it's not a well-thought-out decision, you should try your best to give your perspective, but only AFTER you've listened thoroughly to her. When she knows you've really heard her, she may be more open to your perspective.
posted by vienna at 4:02 PM on October 15, 2014 [4 favorites]

Best answer: Luckily this decision won't be permanent. Your sister may end up finding a better situation for your mother, and going to college in the future.

I would certainly understand why she wants to do this, but at 18, it's her decision. I would be very up front with her, "Mom is ill, but she has options, none of which involves a family member tending to her 24/7. Now, if for whatever reason you feel that this is a path for you to take, get certified, arrange for respite care and have a plan for dealing with step-dad. Don't do this without a Living Will or an Advanced Health Directive in place. Don't even think about it. I don't personally feel called to do this, and I don't want you to think that I'm some fallback solution if this doesn't work out. What are your plans for dating, going out, living independently and having your own life outside of Mom's care?"

She may fell all noble and shit, but it will get OLD once all her friends go off to college, and she's stuck at home in a situation that has no hope of getting better.

Tell her, "You can try it, but promise me, if it doesn't work out, you'll find another caretaker and you'll get out on your own, get your education and have a life."
posted by Ruthless Bunny at 6:06 PM on October 15, 2014 [1 favorite]

Response by poster: Wow. The depths of MeFi empathy and wisdom give me comfort. Thank you.

I will be referencing this thread and other elderly care threads as my sisters and I navigate this new chapter in our family.

My youngest sister is going to talk with Mom and get some vital info, and Sis and I will talk this weekend so I can get a better idea of the options and where my sister's head really is. She and I have always been pretty close and I plan on supporting her in every way I can whether she decides to take care of Mom or run off to Timbuktu.

Thanks again. I'm open to more insight or specific resources.

and thanks for ignoring the stupid phone's autocorrects that I didn't catch on multiple previews
posted by MuChao at 8:39 PM on October 15, 2014 [2 favorites]

So if your sister isn't there taking care of Mom, who will? Serious question. Does stepdad do anything? As for a home health care nurse, we tried hiring one for two weeks in our family and he made more than my mother did in pay, so it wasn't feasible.

This is to say that ah....your sister may very well be trapped in being the caregiver because things will get worse if she's not there. Usually it's the daughter living nearest to an ill parent who gets stuck with caregiving, and that's happened here. If there's no way to get someone else to do that work, I certainly would feel horribly guilty about wanting to go to college and live my own life. So unless there is some way to find someone to take over for your sister, I don't think there's going to be much leeway, practicality-wise or money-wise. Or conscience-wise.
posted by jenfullmoon at 9:46 PM on October 15, 2014 [1 favorite]

She is 18 and can make her own bad decisions. You are older and can help her to not suffer forever for them. Tell sis that you will pay her to watch mom for one year. You will not give her the money directly. It will go into a college fund. If she does not go to college, that year will be wasted. Make it 2 years if you like, but, don't pay her unless she goes to college. Stay firm.
posted by myselfasme at 5:54 AM on October 16, 2014 [1 favorite]

My youngest sister is now 18 and possibly graduating high school before the end of her senior year, which makes me very proud.

When interacting with your sister, try to keep the above foremost in your mind. Try to remember she is intelligent and competent and hard working. My own sister seems unable to remember that about me. I have a lot of personal challenges and, out of concern for my welfare, she wants them resolved, but every single time she talks to me the contempt and assumption of incompetence is palpable. Try super hard to start from a place of respect and an assumption of fundamental competence. And then, yes, take into account that she is young and in a difficult situation. But please don't let those two facts completely blot out the fact that she also is bringing significant assets to the table and should be respected as such.

Usually it's the daughter living nearest to an ill parent who gets stuck with caregiving... So unless there is some way to find someone to take over for your sister, I don't think there's going to be much leeway, practicality-wise or money-wise. Or conscience-wise.

jenfullmoon is correct. I used to read a lot of articles about women's issues and welfare and what not. The women who could not get off welfare were women who had relatives (parent, child, whomever) who needed a great deal of care and, for whatever reason, it fell to them. They were consistently in a situation where there simply weren't other options for humanely providing that care, even if money had been no obstacle. Poverty in the U.S. is a largely feminized issue and that is so in part because women are de facto expected to provide care for relatives and then not really given credit for that fact. They provide that care and then get these attitudes like "If you were actually competent/ambitious/whatever, you would also have a real career." And that is simply not realistic.

I took a lot of college classes while ill and caring full time for my special needs sons. These days, you can take classes online and you can also find a lot of classes aimed at "adult" learners. Those classes often meet one day a week (often in the evening) for three hours instead of three days a week for one hour each time. I took classes part time because it was all I could handle. At one time, I was taking community colleges classes in California and the tuition was so low that my college fees were usually less money than my textbooks. Plus, I think you can get Pell Grants and the like if you are taking as little as two classes (I was sometimes only taking one class at a time).

So look into the possibility of having her go to school part time while taking care of mom. Look into having her take classes online or take condensed classes. Also, since she is apparently bright, look into CLEP tests and similar. If she can test out of a few basic classes and mostly take classes that actually interest her, that may be more palatable and not feel like just one more chore on top of taking care of mom.

At age 18, I had no idea I could test out of some of those classes and I felt completely screwed by the system because I had taken 4 years of college level math in junior high and high school only to be told I needed two more math classes to graduate with any degree at all. They wanted me to start with calculus because I had already taken so much math previously. I felt completely and utterly crapped on. I hadn't even declared a major yet and I later declared as a history major and they wanted me to take math like a STEM student. I later CLEPed Algebra and then took a intro to statistics class. (I am still bitter about this, though less than I once was.)

So even if she ends up taking care of mom, do not rule out the possibility of her attending college. Even if she does so very part time and intermittently, it will give her a different sense of herself, it is something to put on a resume, and it will make it easier to return to college later even if this temporarily derails her life.

Best of luck.
posted by Michele in California at 9:32 AM on October 16, 2014

« Older Psychodynamic group therapy -- a good investment?   |   Horsehair Jewelry Newer »
This thread is closed to new comments.