Help my sibling and I care for our mother.
January 25, 2014 11:16 AM   Subscribe

It has recently come to our attention that our mother is hiding—what seem to be very serious—health issues from us. We want to help her, but we're unsure how to proceed. I am seeking advice on two fronts: (1) help us navigate the current healthcare bureaucracy, and (2) help us care for someone who is probably going to try to refuse our help. All of the details inside.

I live on the west coast. My sibling lives in the middle of the country in a major metropolitan area. Our mother lives approx. 2hrs away from said major metropolitan area in a very secluded, rural area. She lives with her Boyfriend of over a decade.

This weekend our mother is visiting my sibling for a birthday party. While she is on her way into town, Boyfriend calls my sibling to inform her of the following:

a) Our mother has significant health issues that she is unwilling or unable to address. These are: (i) lumps in the breast, (ii) rectal bleeding accompanied by extended periods "in the bathroom" in the mornings, the implication being using the toilet, (iii) low body weight, to the point where an old friend bumped into her and failed to recognizer her, (iv) increased lethargy; "she just sits around all day, doesn't want to do anything."

b) Our mother is consuming excessive amounts of alcohol, to the point of having a beer gut (despite (a)(iii)); consumption is beer from a can, starting around 1pm and continuing until she goes to sleep, between 9pm and midnight, depending. Our mother is also smoking excessively; multiple packs a day. Additionally she drinks about a pot of coffee a day. (Boyfriend smokes but does not drink.)

c) Our mother has no health insurance, no primary physician, and has not done anything toward signing up for an ACA Health Plan or Medicare. I think she had a physical a decade ago during a brief period of having health insurance via Boyfriend.

Most of (b) is already known to us. It was the primary cause of our parent's divorce. Previous attempts at confronting these issues, especially the alcoholism, have failed. Ever after jail time due to a fourth DUI (she no longer drives), we were unable to prevent her from drinking and taking up smoking again. However, now, it seems, it is a daily routine with extended hours.

After the phone call where the above is revealed, my sibling calls me, relays the information. I am told our mother is staying with her sister and niece while in major metropolitan area. This is bad news because her sister is also an alcoholic and an enabler, and the niece is a straight up junkie. We both agree that she should not stay there, and my sibling is willing to house her, but my sibling is unwilling to stay up all night getting drunk with our mother so the offer is basically a non-starter.

We have a discussion about what to do now. Here is the plan we settle on:

My sibling is to meet with our mother, asses the veracity of the claims made by Boyfriend. If, in my siblings opinion, the claims are true and the health issues are significant and immediate, my sibling will take her to the ER, where she may or may not be admitted, but either way we can hopefully get a diagnosis. We agree to split any costs that this may incur. We recognize that our mother will not want to do this, but we agree that we will both present this (me via skype) as non-negotiable and we are both going to require this step as a prelude to basically any further interaction. At the same time we agree that we will need to get health coverage for her asap, one way or another. We agree to start requiring and helping her to pursue this as well, with escalating responses up to and including both of us going to her house and making her sign up. We are unsure of how to get this done immediately as our mother is in major metropolitan area without any of the supporting documents one needs to apply for such things.

I pointed out that we are going to need boyfriend on board and telling her the same things, not sneaking around getting us to take care of everything. We both agree that may or may not actually happen. My sibling tells me the impression boyfriend gave was one of not necessarily in love, not wanting to deal with the issues, but stuck with our mother. He is a great, caring guy we both have a good relationship with. We consider him a family member, we consider his family part of our family. But he is the sort of guy who doesn't confront these sorts of things, doesn't deal with emotions these sorts of things cause, etc. He's about the same age, a little younger than our mother, with his own set of health issues (not as serious).

Other things my sibling has investigated include taking our mother to various doctors or even planned parenthood, but they all said if it's serious they're just going to be able to give a referral. We realize we may only get one chance to force action, so we want to maximize the diagnostic information we get from the first battle, since it may be the only one.

Lastly I tell my sibling that in the end our mother may very well decide to do nothing and to change nothing, and that we have to decide at what point we let her live her life and accept the consequences. My sibling does not like this, but agrees. We are murky on this point, both hoping it won't come to that.

So my questions from the front page, restated:

(1) Are we doing these things in the right order, paperwork wise? We want to minimize, obviously, the financial impact to our mother (who has no money to speak of, no income, only a modest (<100k) 401k, and is eligible for social security now (or within months of now)), and minimize the financial impact to ourselves (we each have families, jobs, mortgages, debts and only modest savings). Is the ER the right move? Should we be taking a different route?

(2) How the hell do we help our mother when she refuses to take responsibility or action for any of this? We have always had a great relationship with both our parents, our mother is the easiest person in the world to get along with. She's not going to fight us by yelling or threatening or anything like that. She's going to hand wave it, "I'm just getting old," "my drinking doesn't hurt anyone," etc, and try to just not talk about it. How do we separate the voluntary damage in (b) from the potential diseases in (a)? Can they even be addressed separately? And lastly I will take any advice on how to accept that in the end we may not be able to do anything (or reasons for not accepting that).

Thanks for reading.
posted by anonymous to Health & Fitness (16 answers total) 2 users marked this as a favorite
I kept reading and reading, waiting to get to your last sentence. And then I got to it.

I can't speak to the bureaucratic issues. But I can speak about that acceptance; about having a mother who rejects help for even dumber/simpler reasons (i.e. no habit/addiction component). Just poor, foggy thinking....which is something we can all expect when we get older.

My first instinct was "I'VE GOT TO SAVE HER HEALTH!!!". But you can't save health if the person doesn't agree with your urgings, even just out of wrongness/ignorance/fogginess. Yes, if she's mentally incompetent, you can petition to take over her care and try to force her compliance, but that's a heavy step, and not one reasonable people will choose unless the person is really really far gone or stone-cold cuckoo. Merely neurotic, unreasonable thinking are not grounds for such intervention.

Try your best for her. Learn as much as you can about the issues. Do your best to explain and convince. Even make a bit of a pest of yourself. Take every step you can. But if mom doesn't want to walk the smart path, that's not on you. You need to let go, even though every cell in your body wants to come to the rescue.

It boils down to this:

Human dignity reserves the prerogative to make non-optimal or even foolish decisions, even if those decisions have grave repercussion for oneself and others.

You cannot possibly imagine what I've gone through to be able to type out that sentence. But I've learned and grown a lot in the process. In a funny way, I feel like there's as much love and mercy in my acceptance of this as there would be in having guided my mom out of crisis. It's just another sort of love and mercy. I hope you can maintain equanimity regardless of the sort of mercy this situation will eventually turn out to require.
posted by Quisp Lover at 11:32 AM on January 25, 2014 [15 favorites]

Your mother is an autonomous adult and has the right to address (or not address) health issues as she sees fit. You can offer to help her sign up for ACA (is she eligible for medicare?) but that's it. You should not go to the emergency room. What you have is not an emergency, you just wish your mother would make different decisions.
posted by Violet Hour at 11:32 AM on January 25, 2014 [7 favorites]

This situation is absolutely not what the ER is for. Your mother will be triaged and made to wait for a very long time before most likely receiving instructions to see a doctor on her own time. If she is already unwilling to see a doctor, I suspect this experience will make her dig in her heels and be even less likely to seek help.
posted by telegraph at 11:44 AM on January 25, 2014 [3 favorites]

I see the directions the answers are going so far, and as someone who struggles with my own codependency issues, I won't say those answers are wrong, BUT, let's assume you have thought about this stuff and you want to help your mom anyway. I personally find that a valid perspective.

I'm in a situation that is somewhat related. I've been talking to the social workers at the hospital where I work, and a big thing they keep emphasizing is just getting my family member into a hospital. The thing is, once you're in the hospital, the social workers there will be an enormous help in getting balls rolling. They can sign your mom up for healthcare. If your sibling goes with your mom, your sibling can talk directly to the social worker and find out more about any services available in your area. I would not volunteer to pay for anything in the hearing of hospital staff - your mom is likely eligible for low-cost or free services. You and sibling can figure out whatever is billed later. Your mother may not be having an "emergency", but given how our current health infrastructure works, getting her to an emergency room is not a bad idea in my opinion.* (Also, rectal bleeding can be an emergency and is worth getting checked out right away.)

Physically your mom is probably in pretty bad shape. She may have a beer gut, or she may have a mild ascites. Although her health problems are frightening, the health issues may be your main route to getting help for her.

In the big picture, you cannot fix your mom. She is very unlikely to have any dramatic changes in her ways of dealing with life. But as her physical state declines, she will probably have to be more open to your help. While I strongly recommend Alanon to you (I find it tremendously helpful and reassuring), I personally think that can coexist with doing what is possible to lengthen your mother's life.

*I am a nurse in a county hospital and am well aware of how emergency rooms are misused, however, I am trying to be practical here about what can get your mom the most help the fastest. A county hospital will see many people very like your mom and although the wait time may be long, I would personally strongly lean toward going this route.
posted by latkes at 11:48 AM on January 25, 2014 [8 favorites]

...but we agree that we will both present this (me via skype) as non-negotiable and we are both going to require this step as a prelude to basically any further interaction...

The last few days I have reading journal articles about the reasons that people often do not seek medical care after identification of a suspicious lump (ie, self-examination) and/or even a diagnosis. There are many, many reasons listed when interviewed as to why they delayed medical care or follow-up appointments, but some of the big ones included: 1) worry about communication with a health care professional; 2) anxiety/fear;3) concern about money (included no insurance);4) logistical challenges(ie, transportation to medical facility); 5) mistrust of the medical professional,although this sometimes depended on the subpopulation.

Anyway, I would approach this in a different way rather than an ultimatum. First, sibling 1 can sit down with your parent and sign for up for ACA or whatever programs are needed.

Then I would sit down with both the BF and your mother (it may be your sibling who does this). I would start out as mom, we/I love you, I am concerned about .... and wait (and hopefully wait for her to talk). I would also say something along the lines of that you are very concerned and why doesn't she want medical care or isn't pursuing this? IF you know her well, you may point to things on that list(anxiety? Challenges with transport?) Identify the barriers.

Then I would offer a solution.IF it is anxiety, go into the doctor's office with her. IF it is driving, take her there.

I would not address the alcoholism/caffeine, etc, for now. The symptoms seem severe/worrisome as it is.

Also, as a heads up if this is worse, if it is very serious and a diagnosis of ...not going to list things here, but there are clinical trials, etc, and some of them do include and assign navigators or people to help you seek care. There are also programs that will pay for more aspect than you think (transport, health care in another city if required, etc.).

On preview, I have known of pple going to the ER for symptoms like this or other symptoms (pple without insurance). Some have gotten the medical care and assigned health care programs that paid or provided medical care in the community. This varies from city to city and is probably not recommended, but anecdotal. I would try to walk in with your mother to a GP first, and someone who is open to working and knows in advance that your mother may have anxiety or whatever issues you identify.
posted by Wolfster at 11:49 AM on January 25, 2014

Going to the ER and getting admitted to the hospital can be a great starting place for the elderly with serious problems but I would recommend against it in the case of your mom. If she's drinking that much she will go into withdrawals, which will be ugly and pointless since it seems like she doesn't want to stop drinking. And the hospital may be a no-smoking facility, in which case she'd also feel like a prisoner.

Sometimes patients can get admitted with orders that the family may bring them 2 beers a day or some such, but that usually takes a very special agreement with a doctor and you're unlikely to get that by going to the ER.

I'd start with a trip to a primary care doctor to get some labs done and advice about how to move forward. This may have to take place several weeks into the future.
posted by MadMadam at 12:08 PM on January 25, 2014 [1 favorite]

There's not enough in your post for me to say that you're going to be able to have her adjudicated as incompetent to manage her own affairs, but in all likelihood, that's the only way you really have of making her do anything.

If you can convince her to do anything, I recommend you go the GP route. She needs someone who's really respectful, courteous, and willing to meet her at her own level. Consider reaching out to people in Al-Anon or the local aging resources agencies to get suggestions on suitable providers.
posted by SMPA at 12:11 PM on January 25, 2014 [1 favorite]

Re 2), she's in denial about/rationalizing the drinking, the smoking, etc and your frustration and upset won't change that. You may be able to get her at least engaged with health care by starting with the things that bother her. Results from tests re the gastro problems will likely turn up other things and direct further investigations. Agree with SMPA - she is more likely to follow through with these if the doctor is sensitive and familiar with geriatric populations.
posted by cotton dress sock at 12:19 PM on January 25, 2014

Is there an elder care agency in the state or county where your mom lives? They can be very helpful and may even be able to suggest when and where for the best ER experience.

If your mom does end up being admitted, be sure to tell them she's an alcoholic and a chain smoker. They'll probably guess but the more they know from you the better able to address those issues they'll be.

I agree that your mother is an autonomous adult - but if she was tearing out of the house naked into a snowstorm, it would not be wrong to try to stop her or ask her to put a coat on. You can not live your life blocking the door if she's determined to bolt into the blizzard, but I don't think it's okay to sit by and say there goes mom.

Social workers should help you figure out what can be done and where you and sibling can be helpful
posted by Lesser Shrew at 12:27 PM on January 25, 2014 [1 favorite]

A huge issue here is compliance -- even if your mom knows what to do, you can't make her comply on a daily basis with what she's supposed to do. That includes things like taking medicine every day (or even picking up the medicine from the pharmacy). What does her boyfriend think about the day-to-day aspects of getting your mom to comply with anything medical? Will he be very encouraging of her taking her daily medication, etc, or will he just kind of let her do her own thing while silently fretting? Does he keep up with his daily medical needs (like taking his own medicine every day, making/keeping appointments with doctors)?

In general, I would lean toward the ER, just because they have a lot of specialists within the hospital, so best case, if she gets admitted and stays long enough, it'll be "one-stop shopping." They only have an obligation to triage and make sure a patient is stable, and then can send her on her way -- but lots of people show up at the ER for lots of very complicated reasons and in my experience the doctors will try to admit the person if they think it'll make a real difference to the person's health or safety (that even goes for things like homeless people showing up because they couldn't get a bad at a shelter, etc). I honestly expect that they'd want to admit your mom. In contrast, in my experience, a GP is just going to give her a physical and long list of referrals, or insist she go to the hospital -- so while that's supposedly where she should go, I would expect that going to the GP is not actually what would make the most practical difference. Once you get your mom into the hospital, a lot can happen very quickly; people there will know how to deal with attitudes/circumstances like your mom's because they see them every day. ERs are also usually better with things like offering financial aid, but since your mom will almost definitely get Medicare or Medicaid or both through the ACA (and therefore should have very low or no bills for care), that shouldn't be an issue anyway.

However, since your mom is a smoker and generally not interested in her health, she's likely to only going to stay at the hospital as long as she can have smoke breaks. So, she'll probably last through the wait in the ER (if she can slip outside for smoking/drink breaks periodically) but it's going to be tough to get her to stay at the hospital for more than a day. Again, the issue is compliance. The tough thing is, an ultimatum might get your mom to comply and get on board for a day, but she needs to be compliant *all day every day* in order for her to actually get any treatment.

Right now, I would just get her signed up for the ACA (and her boyfriend as well -- is he on it?). I would also ask that next time she has rectal bleeding, her boyfriend should take her to the ER and *strongly encourage* that she stays until the doctors say she can go. He should also give you and your sibling the head's up that she's at the ER, so your sibling can drive over and/or you can fly into town so that you can take the opportunity to impress upon her what a big deal this is and try to get the appointments and medicine that she'll probably be given prescriptions for at the ER all straight. If she's still not willing to be compliant to treatment at that point, though, there's honestly not much you can do except ask that her boyfriend call 911 if/when the next serious health scare occurs and reassess then.
posted by rue72 at 12:50 PM on January 25, 2014 [1 favorite]

Your mother is not a child. Her drinking and smoking is her business now that she is no longer driving. If she asks for help, then by all means, but you can't will an addict into breaking addiction.

You are in panic mode because you just got new information, but none of this is new and you do not need to panic. Do everything you can to sign her up for Obamacare and then, since she'll be insured, help her book an appointment for a breast screening. This has been going on for a long time and the ONLY thing a trip to the ER is going to get you that you won't also get by waiting for coverage is a huge medical bill she can't pay.
posted by DarlingBri at 12:54 PM on January 25, 2014 [5 favorites]

Mom's failure to observe rudimentary good health habits suggests that she is depressed. Her 'crutches' provide islands of peace in a sea of worry. Can she possibly be unaware of the need to quit smoking, moderate drinking, and see a doctor about the breast lumps and weight loss? That she does not change her lifestyle is problematic since she will likely resist efforts for others to force her to change. Lack of funds might be as much of a point as lack of self worth. ACA (Obamacare) might be a great help. Can boyfriend be encouraged to sign himself up for it, and in the process sign her up too. Then he can ask her to accompany him to medical care...and as long as they are there, why not have a checkup herself?
posted by Cranberry at 1:03 PM on January 25, 2014

Re: your mom's nicotine habit if she is admitted to the hospital: If she is admitted, your sibling can immediately tell the admitting doc that she is a smoker and needs a nicotine patch. At my hospital that would be no problem. Likewise at my hospital, smokers walk outside and smoke every day. Crack addicts also walk down to the corner and score some crack, then come back to the floor. I am not convinced your mom is going to check out AMA from the hospital just because she wants a smoke. She can get ativan for alcohol withdrawal if that is an actual issue for her.

I don't want to get into a back and forth with folks here but I would recommend you ask some directed advice from folks who work in hospitals or doctors offices about this. Not that those people will all agree with me - I know there are health care workers in this thread with different opinions than mine - but just be aware of getting advice based on real-world experience vs. conjecture.

Also, I want to come back to the fact that rectal bleeding, while it may be benign (a hemorrhoid), can also be a serious health emergency (lower GI bleed). This is a valid reason to go to an ER no matter what your other issues are.
posted by latkes at 1:14 PM on January 25, 2014 [2 favorites]

Lastly I tell my sibling that in the end our mother may very well decide to do nothing and to change nothing, and that we have to decide at what point we let her live her life and accept the consequences. My sibling does not like this, but agrees. We are murky on this point, both hoping it won't come to that.

As long as your mother is of sound mind, no one can force her to do anything about her health.

Maybe if you ignore the bad habits (drinking, smoking) and encourage her to see a doctor based on her other health issues, you may have more success with her cooperation.
posted by JujuB at 1:17 PM on January 25, 2014

I know from difficult personal experience there is nothing you can do to force another person in this circumstance into medical care unless they have no capacity to refuse. MeMail me, OP, if you are interested in the details of what my family encountered in a similar situation.
posted by cecic at 3:06 PM on January 25, 2014

Your mother has earned the right to live whatever life she chooses. She doesn't want to go into any hospital or care facility because she knows she can't have her alcohol or her cigarettes there and those are both a big part of the life she has CHOSEN for herself.

It's not up to you and your sibling to try to change who she is in order to keep her alive but miserable (which she would be) for the next how-many years. It's up to you just to love her and let her know that and accept the fact that she has chosen a path that will cost her her life earlier than you would have it.

Take care of your own lives and live them the best you can. If you choose healthy lives, that's good; if you choose unhealthy ones, that's still your right and privilege.

I don't smoke or drink but I'm bullheaded and do what I want with my life. Sometimes my kids roll their eyes, sometimes they try to talk me into something else, but most of the time they just hug me and help if they can - or make sure I have their phone number if they can't.

A person should be able to live as they choose after having lived a lifetime for others. I hope you'll think about that.
posted by aryma at 11:41 PM on January 26, 2014 [1 favorite]

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