How do I cope with someone else's chronic disease (espeically when they aren't taking steps to manage it)?

December 24, 2007 2:11 PM

My mom has fibromyalgia. She cries a lot - she's obviously in great pain. However, if it doesn't involve taking a pill, she's not interested in any methods of alleviating the problem. She will not make lifestyle changes in food, exercise, etc. Even if it IS taking a pill, she's mostly not interested in methods of alleviating the problem unless they work instantaneously and with great efficacy. Which, with fibro, is pretty rare. I don't need to find out how to help her, because I've done the research, found her multiple specialists, and none of it has helped. I need to help me.

So, a little more on my mom: she has had a tendency throughout her life to live in her own constructed reality which doesn't necessarily map to ours. She doesn't believe her meds could have bad side effects or interactions, even when I have graphs and charts to back me up.

I have sat with her in meetings with doctors, taken notes on what they say - and what she walks away with is not the same things the doctors are saying, or even close. (When they say they can't cure her, she says that they were mean, and told he she was crazy.)

She's got sleep apnea, but refuses to use the oxygen machine she was given (she tried it one night, said it was uncomfortable, and refused to get it refitted for greater comfort). And she's never taken good care of herself physically.

She also lies to doctors, and to me, about what meds she is and is not taking. This is not helped by her friends and cousins giving her various prescription pills.

She's had problems with depression throughout her life, not helped by the death of my dad. I've tried sending her to therapy - she takes great pride in the fact that she made her therapist cry out of pity for her (and now she won't change therapists, no matter what).

My mom is not elderly, looks to be mid-forties at most (she's actually early 60s) and there's no way I'm going to get her into a managed care situation. I fully believe that one of these days, she's going to wind up dead, and that may in fact be what she wants.

She's staying with me for three weeks right now (I live across the country), and the stress is bad enough that it's put *me* on meds. I have no siblings to help me with her.

What steps do I take next with regards to her? Tell on her to her doctor? Try to force her into hospitalization? Disengage and just wait for her to drop dead? I have yet to find a solution that doesn't make me feel like the most horrible person in the world.

And how do I take care of me in all this?

Yes, I'm planning to go to therapy, but I'm hoping someone in the MeFi world has had this experience and can give me some advice.

posted by anonymous to human relations (24 answers total)

For any of this to work she has to want to change. From the sound of things, she doesn't. I don't see any real options for you. Tell her friends/cousins to stop giving her drugs; that might help a little.
posted by hjo3 at 2:31 PM on December 24, 2007

AlAnon. (Or at least the literature.) When you hear "the alcoholic", substitute, "the sick and suffering person in my life that I cannot fix." Standard disclaimer: there are meetings out there that you won't like, but the main value is seeing that other people are going through the same process of learning (or not) how to "detach with love", "letting go of the results", etc.....and that's not the same as "disengage and just wait for her to drop dead." You are not the most horrible person in the world.
posted by availablelight at 2:36 PM on December 24, 2007

My mother doesn't have fibromyalgia, so please bear that in mind.

But there does come a point in certain relationships where you simply have to walk away because there's nothing else you can do. There are only so many times you can extend a helping hand to someone, and have it either ignored or pushed away, before it starts to hurt too much.

I'm a great believer in everyone living their own life, no matter how fucked up it may appear to be to outsiders. That means your mom lives in her little world and suffers, and you live in yours. It seems that you've done an awful lot to try and help her. I don't think you owe her anything.

The fact that she's put you in a situation where you need medication just to cope with your own mother is a great teller for me.

So, here's what I'd do. Tell her doctor exactly what is going on with regards to her health. Especially the taking other people's medication bit. And then walk away, if only for a while. Just to get my head cleared a bit.

She's your mother, not your child.
posted by Solomon at 2:39 PM on December 24, 2007 [2 favorites]

BTW, people die (or at least die prematurely) of sleep apnea. Being in pain because you won't take care of yourself or follow a prescribed regimen for fibro is one thing; not using your $900 CPAP set-up or even bothering to become adjusted to or to troubleshoot any discomfort ((I'm sure you're aware the various sleep clinics have mask workshops, consults, etc. for someone who isn't acclimating, that it takes a good couple weeks to get used to even the right mask, etc.) is entirely different. She is displaying depraved indifference to her own health and there is nothing you can do to change her attitude.
posted by availablelight at 2:43 PM on December 24, 2007

I had this exact experience with my ex wife. Unfortunately, as you have already seen, this kind of person will not get better, and only make those around them sick as well.

I had to disengage. Ultimately, I moved out and we divorced, over more issues than just this. But it is indeed impossible to live with such a person, and stay healthy yourself. Fortunately, in your case, you don't live with her.

You must disengage. Your therapist will help you with the right steps to do this. There is probably some part of you that gets something out of being the caregiver, so it's hard to let go. And you have the added burden of being the only family member she can rely on, so the idea of "letting her down" fills you with guilt.

But guilt is meant for those who have done something wrong. You have done all you can, but none of it helps her, and only hurts you. You are rightfully tired of hitting your head against a wall.

People like her do not really want to get well. They are addicted to the attention and the drama that being sick brings to them. That's why they won't follow through on what the doctors recommend. It's not that your mom is not sick. She is. But she has problems beyond the physical sickness. She probably has mental illness and emotional issues that are being ignored, and you can't do anything to help that.

You are afraid of abandoning your mom, but instead you are abandoning yourself and your needs. You are not helping either of you by sacrificing yourself. In time, and with the help of a therapist, you will learn practical steps to remove yourself from her drama. There is more to it than I can even start to touch on here, but I just want to encourage you that you are doing nothing wrong, and you have done above and beyond the call of duty. You are more interested in getting her well than she is herself, and you have no reason to feel guilty or to feel like you somehow failed. If you don't take care of yourself first, then you won't be capable of helping anyone else.

Good luck!
posted by The Deej at 2:46 PM on December 24, 2007 [2 favorites]

Would she have gotten three weeks with you without behaving this way?

Consider the behavior you're rewarding.
posted by effugas at 2:46 PM on December 24, 2007 [1 favorite]

The first, most important thing for you is to realize that you are not responsible for your mother's health. She is an adult, making her own (bad) choices. As long as you feel it is your job to make her better, you will make yourself sick. (It already has.) You can be helpful, loving and supportive but you can't control what she does. The first step is let go of the idea that her health is your problem to solve. This is easy to say and hard to do. However, it is reality.

Yes, one day she is going to wind up dead (we all do) and, NO MATTER WHAT YOU DO, it will probably be sooner because of her choices. That is also reality.

Once you accept that you are not in control, you give yourself more emotional distance. At that point, you figure out what, if anything, you can do that will actually make a difference, given your mother's personality. If you can be honest with yourself about the situation, then you make choices that you know, in your heart, are the best you can do under circumstances. Is all of your activity actually helping your mother do the right thing? If not, why do something that should help but empirically doesn't? Would calling her doctor make a difference? Is it worth the drama? If the answers are Yes, then do it. If the answer is no, then the best you can do is nothing (in that direction, at least) Right now, those choices make you feel like a horrible person because you want make your mother deal with things they should be dealt with. Let go of the "should", accept the reality of your mother's personality, and you will be able to feel comfortable that you can only do the best you can.

You find some of the Al-Anon material helpful since it is for people whose loved ones are making self-destructive decisions (ie. alcoholic drinking).
posted by metahawk at 2:50 PM on December 24, 2007

My husband has sleep apnea and I am totally horrified at her refusal to use her machine. I know from experience just how lifechanging it is for a loved one to finally feel rested-I imagine that the sleep apnea even affects her fibromyalgia.

I think I would talk to her doc about the meds from other people, etc. This is pretty illegal on their part and you know as well as I do this could kill her. Heck, sleep apnea all by itself could kill her and if these meds tranquilize her at all...again, sure you know all this too.

Someone, preferably a doc, needs to straight up ask her if she is trying to kill herself slowly. Her useless therapist needs to be addressing this behavior as well. You, on the other hand, have to come to the realization that you cannot make her do what she needs to do, and all you can do is not reinforce her bad choices. One thing you can do is inform her that until she takes better responsibility for her own health, you will refuse to hear her whining, complaining, and pleas for sympathy. If she continues, then simply say, I love you mom, I will talk to you another time about something else, and HANG UP or WALK AWAY.

THIS IS NOT YOUR FAULT. And I am truly sorry you have this to deal with.
posted by konolia at 3:01 PM on December 24, 2007

Just wanted to add that I have the spent the past two years struggling with a loved one's mental illness. It is a life lesson in letting of expectations and "shoulds" and learning to accept reality as it is. All I can do is the best I can and sometimes that looks very different than I had thought it would. I can also tell you that I know a number of parents dealing with children who have made mulitple attempts at suicide. Most have said that once they accept that their child might succeed and they could not be sure of preventing it, they found a certain calmness that let them care about their child but without the same level of anxiety. That is what I am hoping for you - that by accepting your mother for who she is and giving her the primary responsibility for her own life, you can about your mother but without the anxiety.
posted by metahawk at 3:01 PM on December 24, 2007

Oh, Anonymous, I am so sorry for what you're going through. You are doing everything humanly possible to help someone who apparently doesn't want help. Solomon gives excellent advice: (sometimes) "you simply have to walk away because there's nothing else you can do." And I think you've reached that point.

This sort of thing happened to me and my siblings, but sibs were Mom's enablers and I was trying to be the rational one. Sibs didn't think Mom's heavy prescription drug use was harmful because she rationalized each drug -- "this doctor says I have XXX so I must take XX" and "my urologist says I must take XXXX too, but I can't quit DRUGA because of my heart ... and I have to take DRUGB because of my nerve problem." And on and on. It finally culminated in her body breaking down, organ by organ. She died slowly but probably not too painfully because she was so drugged up. (I had given up trying to "help" her years ago because she wouldn't follow my suggestions, even though she'd asked for them.)

I hope this doesn't happen to your mother. But if it does, please do not saddle yourself with too much guilt. You obviously have been a wonderful child to your mother and you've been incredibly patient.

I'm so glad you are getting help for YOU! Good luck!
posted by Smalltown Girl at 3:04 PM on December 24, 2007

Perhaps you can try applying this popular article on animal training techniques as applied to human behaviour to your relationship with your mother? In short, ignore her whenever she does anything that you don't like, and praise her whenever she does anything you do like. It seems like she's seriously driven by a need for attention, so this should work beautifully.

(Oh, and slap the people who hand her pills. I don't know what in all the hells possesses people to do this....)
posted by anaelith at 3:18 PM on December 24, 2007

I totally respect your desire to be anonymous, but I hope there isn't a shame issue. Your mom is depressed and has a chronic disease. It sounds like you're doing a standup job. Depressed people wear you out, and I hate to say it, but worrying you is probably a way for her to control you.

Is there anyone she does listen to? I am not a doctor, but I work with fibromyalgia specialists. From what I understand, allied and complementary health is key. Since she isn't listening to you, can you see if there is someone she would listen to- a minister, a friend, even a hot young guru.
posted by gesamtkunstwerk at 3:24 PM on December 24, 2007

This rings so many bells it sounds like there's a fire station in my head. My mom did the exact same thing around the same age. It started with the fibromyalgia which she refused to believe physical therapy could help and she went from doctor to doctor to hear the same thing. She also got prescriptions from multiple doctors, never told them all the pills she was taking, and sometimes would randomly take some "because it might help." She also had the instant gratification idea of pills so, if she was supposed to take some for a month to see results, she would quit in less than a week "because they don't work."

Not to scare you--my mom is kindof a nutjob hypochondriac--but she then started self-diagnosing herself with diseases. She once convinced herself that she had caught an undiscovered disease by eating food from a street vendor 4 years ago. She checked herself into the Mayo clinic then left in a huff because they told her there wasn't really anything wrong with her. (Her interpretation: "The doctors were mean.") She finally graduated to faking heart attacks (yes, really).

The thing that "cured" her? Actually getting breast cancer. She had a mastectomy about 10 years ago and whenever I talk to her, I don't hear a peep about how she's feeling. Ever. (She's 78.)

I was lucky in that I have many siblings that bore most of the burden. In discussing this, we came up with these theories:

1. She is an attention-junkie: if you're sick, everyone is supposed to pay attention to you. You get payoffs from your relatives, going to a doctor and talking about yourself, and especially hospitals.
2. Her children were getting older and this is a way to ensure that they stick around. There was a major guilt trip that ran through these illnesses.
3. While she always had these tendencies, it got very bad when she retired. She didn't HAVE to get up and go to work, so she was free to concentrate on herself and her illnesses. There was the "I've retired, I'm useless, I might as well die" thing going on.

Is your mom retired? If so, does she have anything to occupy her besides her health? I felt like, with my mom, it was almost something to do: something to talk about, something to think about, etc. I am happy to report that when I talk to her today, we talk about books, politics, etc.

One piece of constructive advice: go through her medicine cabinet. Throw out any expired pills (we were scared of how many ours had), note how many doctors she is seeing, and call each of them with the entire list of meds (including any you know of that your relatives are giving her--that is so irresponsible of them).

And maybe try to send her little things that you can discuss (books, movies, websites?). Try to change the subject when it comes to her health and don't worry if it results in her hanging up the phone. (Sample: "But I don't think you CAN get malaria in Michigan." CLICK.)

Good luck, so sorry you have to deal with this on your own. Feel free to email me (in profile).
posted by sfkiddo at 3:30 PM on December 24, 2007 [1 favorite]

Some practical advice for right now. You need to bring someone in for a couple of hours every day if possible, or a couple/few times per week while she is with you so that you can get away. If you or she has a close enough friend (who can be trusted not to give her unauthorized meds), you could do that, or else hire a nurse to come in and be with her.

What everyone is saying is right on the money-- you can't control this situation and it isn't your fault. However, knowing that it will not necessarily follow that you stop feeling bad/responsible.

So control the things you can control-- get away from her as much as you think is reasonable *for your own sanity* (she does not get a vote). You have control over this, because you can hire someone to do it if you can't find a friend.

I think you should also tell her you are so sorry she's in pain, you are sorry the meds aren't working, etc. etc. Don't say "I wish I could help" because god knows what that will start; don't offer her advice, because you know she won't take it. But offering her sympathy might take a little of the wind out of her sails.

Good luck. (By the way, I like to think I'm not as bad as it sounds with your mom, but I can be a really difficult person to be around, and the ones who deal with me best are those who 1. offer simple sympathy without judgement or advice and 2. don't put up with my bullshit)
posted by nax at 4:28 PM on December 24, 2007

I have someone similar to your mother in my life and if that person were going to stay with me for three weeks this is what I would do: sneak 2 to 3 teaspoons of pharmaceutical grade fish oil into their food. Don't cook it. Just mix it up in salad dressing, smoothies, or oatmeal. It might improve her mood enough so that she's not a complete pain in the ass. It also might alleviate the fibromyalgia symptoms. There is evidence that depression and/or fibromyalgia is related to Omega-3 deficiency. Google Dr. Andrew Stoll; he's written a book about Omega-3. Barry Sears of "The Zone" fame has also written a book about Omega-3.

Also look into putting her on a prescription drug called pregabalin (brand name is Lyrica). It's indicated for fibromyalgia and it's apparently tolerated well.

Good luck. It's not easy dealing with adults that don't take care of themselves.
posted by Soda-Da at 5:14 PM on December 24, 2007

The Deej nailed it. My mother isn't physically sick, just sick in the head. After you've done all you can, it's just time to walk away. Don't go at it alone. Stick with your therapy. You know all those treatments for fibro? Some of them are just good self-care and will likely work for you. You don't have siblings but is there another way to get yourself a support system? (Perhaps a caregivers' support group at your local hospital. These little groups are severely underutilized in most communities. More often than not, they're free.)
Good luck ... and remember to breathe.
posted by notjustfoxybrown at 5:25 PM on December 24, 2007

My mom has fibromyalgia. This is not the problem. Your mom behaves in a dangerous and manipulative manner. That is the problem.

In your head try saying, "My mom's problems are too great for me fix. Her refusal to take care of herself makes me powerless to help her. I've decided to disengage completely from her health issues." Just see how that feels for you to think those thoughts.

I'm sorry you're going through this. While you can't fix her behavior or her health, you do have the power to help yourself. Get support from Al-Anon or a mental health professional.
posted by 26.2 at 7:58 PM on December 24, 2007

First I have to say I did not know my sister had a child, but apparently you are that child. So, I am very sympathetic to the craziness you're going through.

> There is probably some part of you that gets something out of being the caregiver, so it's hard to let go.

Yeah, you want to solve the problem. But she doesn't, and these are her problems. My mum isn't as bad as yours but I had to walk away for quite a few months one time. It helped her see I wouldn't be part of her various games. So, I simply echo the idea that you must get away and put yourself first. It's her job to put herself first, and she has refused. She's your mom and you apparently love her, but you do need to disengage.
posted by Listener at 11:11 PM on December 24, 2007

For 15+ years, my mother suffered (as did everyone around her, but especially her only child) with polymyalgia rheumatica. She turned medical people into friends or fired them. Paid for expensive prescriptions, then flushed them away, refusing to talk to the prescribing doctor about side effects.

Not long before she died, my mother was--finally--diagnosed with Borderline Personality Disorder. On hearing that, my psychiatrist gave me the book "I Hate You, Don't Leave Me." It might have been written about my mother...and perhaps yours, too. Reading it eased my guilt at not being her perfect daughter. Whether your mom has BPD or not, I recommend this book.
posted by Carol Anne at 6:34 AM on December 25, 2007

When you find the answer, let me know. I am in a similar situation. I know how hard it can be. Good luck! :)
posted by RobotHeart at 9:37 AM on December 25, 2007

As other people have said, you can't help someone who doesn't want to help themselves, and I have to agree. Having said that, have you or she given any thought to trying medical marijuana to alleviate her pain?
posted by lia at 6:19 PM on December 25, 2007

Disengagement is the answer. I do everything I can to avoid taking care of these people in my practice, because no matter what you do for them, THEY REFUSE TO BE HELPED. It is a bottomless pit. There is no limit to what they will suck out of you emotionally and in the end it won't change the amount of their suffering whatsoever. And they get really, really good at foiling any attempts by others to help them.

The best you can do for her is to be an example of a healthy, self-actualized person and remain friendly and polite, but detached. You are not, repeat not, a horrible person for disengaging. Any attempt by you to rescue her will simply reinforce a negative behavior on her part and further perpetuate her suffering. I know this isn't how things are supposed to be but here you are nonetheless.

PS. Her doctors likely know much of what's going on. I would still give them an FYI about the other, non-prescribed, drugs she is taking. If the doctors are competent and strong, they will confront her and refuse to treat her unless she is above board from now on and complies with a mutually agreed upon treatment plan. To be honest though, these kinds of patients shop around and tend to seek out doctors that buy into and support their whole world view of suffering and helplessness. In the end, it's sad because eventually these people develop the same health problems the rest of us like cancer, heart attacks, etc. and they often don't get taken seriously because of all the bad history they've built up.

I know it's your mother and I know you're stuck with her for three weeks, so you're going to have to grit your teeth and endure it. You may decide your relationship is better off if future visits are limited to a day or so at a time and the weekly phone call. I am really sorry this is happening to you.
posted by Slarty Bartfast at 8:37 PM on December 25, 2007

What a few people have said above about her wanting to help herself is true. My mother-in-law was a counselor for years and years, and she said the trick was to convince the patient that they were fixing the problem, and not fixing themselves. That is, until they could handle the fact that part of the problem indeed rested with them. Then they could take pride in the changes they'd made to their life.

There's a lot of her ego tied up in this, you know? Step into her shoes for a moment. Think the worst: You're attacking her, second-guessing her way of life, scoffing at her meal choices, calling her lazy for not exercising, treating her like a child who can't speak to her own doctor. The more she pulls back, the more you push. You're doing all this with the best of intentions, but from her perspective, you're doing it all the same.

Take a look at Difficult Conversations. I'm not saying it's a cure-all, but it could help you better communicate with her without wounding her ego or yours. And that book "I Hate You, Don't Leave Me" looks promising. On the other hand, it kind of presumes you know that a personality disorder is the problem. When you got a hammer, everything looks like a nail.

That said, without really knowing it, I have apparently "disengaged" from one or two people in my immediate family for similar personality issues. Be open for their growth, but set your boundaries and communicate them.

Best of luck.
posted by thomsplace at 11:39 AM on December 26, 2007

Just wanted to add this:
In addition to what I already mentioned, I have another family member who exhibits this kind of behavior. Probably not on the scale of your mom, but enough that it takes disengagement and tough love to deal with. She has a legitimate issue, but had been complaining that doctors were not helping. After 45 minutes of listening to all the symptoms, I asked if she did anything the doctors said. She hadn't because of (pick your reason.) I encouraged her to try something, and at least that could rule out what it wasn't. She was not receptive. I told her that meanwhile she needed to keep herself busy so as to not focus on the symptoms. (She has no job or young children at home.) I recommended volunteering somewhere, or getting a simple part time job, just to have goals and something to work for, and that she would feel better than just staying home all day.

Later, another family member told me that she immediately called and complained that I was not sympathetic to her; that she told me her symptoms and all I told her was to "get a job."

So, these type of people filter whatever you say into whatever suits them. You do have to understand that in a very real sense, anything you say to be helpful will just be edited out in their minds. It makes detaching easier when you know you are wasting your time and your breath by trying to help.
posted by The Deej at 1:11 PM on December 27, 2007 [1 favorite]