Stubborn sister + new cancer diagnosis + new alarming symptoms
March 15, 2022 7:23 AM   Subscribe

My sister is 51 years old. She recently was diagnosed with lymphoma and is now undergoing tests to determine the type and extent. She has developed new and frightening symptoms but refuses to see her doctor, saying they can't do anything until all her test are done.

She waited months before seeking medical care. Since the diagnosis she has been exhausted, has trouble breathing and is in pain.

Last week one of her eyes started to wander (not sure what the term is) and now she has vertigo and is nauseous & vomits occasionally. She has all but stopped eating.

She will not go to the ER or to her doctor. I know she's afraid and exhausted. I know I cannot force her to go.

I am her main caregiver and this new nightmare scenario has pushed my stress level to 11. She's made her choices but I don't think she's in her right mind. If she loses her eye or worse I will forever wonder why I did not try harder.

Her last tests are on Friday but she is so anxious about having an MRI that she has said she might not get it done.

I want to just support her and love her and give her whatever she needs but - holy shit - I am so angry right now. Can you (gently,kindly please) help me form a mindset or mantra or a strategy? Can't afford therapy at the moment unfortunately.
posted by i_mean_come_on_now to Human Relations (13 answers total) 1 user marked this as a favorite
If things get particularly bad, can you call 911 and have paramedics come intervene with an ambulance?
posted by slateyness at 7:36 AM on March 15 [3 favorites]

Do you know who her doctor is? Without authorization, they cannot legally share her medical information with you, but you can always share information with them. They could then contact her directly and encourage her to come in. If you think that she would be upset that you called the office, ask them to just structure it as a reminder that she should alert them and be seen immediately if there are any changes in her health.
posted by Mr.Know-it-some at 7:40 AM on March 15 [6 favorites]

I'm so sorry you two are going through this. I expect she is more overwhelmed than stubborn. It's more than she can process.

Does her insurance cover a nurse hotline? You could call and describe the symptoms and at least get some peace of mind that it's not a 911 situation. The possibilities your description calls to mind for me (not a doctor) are not good, but also something that won't really be helped by the ER, but it might help you to get confirmation on that. If you are going to her doctor's appointments, plan to prompt her to discuss these symptoms with him, whether she brings it up herself or not.

Have you gotten any support for yourself? It looks like the Leukemia & Lymphoma Society has some options, including a weekly online chat.
posted by praemunire at 7:56 AM on March 15 [3 favorites]

Possible practical strategy part 1: Focus on encouraging her to go to her tests and other appointments. The sooner she completes them, the sooner her doctors can find the right treatment for her.

Possible practical strategy part 2: Remember that you can call for paramedics in an emergency, even if you suspect she doesn't want you to. They work with people who are frightened and resistant all the time, and they will be in a better place to judge whether she needs to seek further medical care immediately.

As a mindset or mantra, I wonder whether it would help to remember that you can't live this for her. That's not cheerful or uplifting but it is true. There are limits to what you can do and you might just be butting up against them today or this week. Next week may be different.

Finally, as per ring theory (comfort in, dump out) if you really want to support your sister then you need to find support for you. If that's not going to be a paid therapist then it can be someone you trust who is closer to you than they are to your sister.
posted by plonkee at 7:57 AM on March 15 [7 favorites]

The symptoms she has can be signs of a brain tumor, which are often operable, and time-sensitive since there's only so much space inside a skull. Brain stuff can also contribute to cognitive issues and poor choices, so the person may become harder to convince. I think you need to get her into a brain scan asap. If I were in your shoes (I was a while back, with a parent, actually), I would turn the next incident into an excuse to get her into a hospital.

I would do the following:

1. Videotape her now (even secretly) so you have evidence of her present baseline, including how she walks, what her eyes look like, and her answering questions.
Also find an older video of her before, so there's some comparison.

2. Next time there's a slight dip in her symptoms (ie, vomiting), call an ambulance. Make sure to tell them she's having unexplained vomiting, vertigo, and her eye focus changing. Get them to order a brain scan.

This sounds really stressful, sending you all the care. Get a therapist for you, too - this next phase is going to be stressful as she receives either more diagnoses or keeps doing treatments, and you will need emotional care.
posted by nouvelle-personne at 8:00 AM on March 15 [6 favorites]

To add on to what n-p said, I'm only saying wait for an appointment to bring it up because it sounds like she is currently in the middle of seeing doctors constantly for diagnosis. I wouldn't wait, like, a month.
posted by praemunire at 8:14 AM on March 15 [1 favorite]

This sounds so stressful for both of you. The suggestions above are good--I wanted to add one re: MRI anxiety. I am very claustrophobic and the only way I could get through my MRI is taking a Valium beforehand--I also asked for the "Open" machine (which is still not very open but is way better than a conventional one). Asking for the Valium would be a good excuse to check in with her doctor.
posted by agatha_magatha at 10:20 AM on March 15 [1 favorite]

Have you had a really open and honest conversation with her about her fear and fear of bad news? Like sitting down and having a compassionate conversation about how overwhelming this is but also how dangerous delays could be, and can you handhold her through the process of at least calling the doctor's office and asking for a few minutes' phone consult to discuss the symptoms and the MRI anxiety? You can say that this is freaking you out, but try to keep that messaging in the "delays are bad/I believe this is serious" lane and not the "this is about me feeling bad" lane.

Because it's true you can't force her to do anything but you are probably the one person who can get through to her to highly encourage her. It's your sister's right to decide not to pursue treatment but doing so on the basis of fear of information and treatment is the worst option and one she will regret when the fear of how sick she's eventually gotten kicks in and it will be too late.
posted by Lyn Never at 10:27 AM on March 15

I have known two family members like this, one of which had cancer at the time. A lot of the reticence was fear--they already knew they were sick and getting worse, so they doctor only tell them what they already knew or something much worse.

In both cases, having someone volunteer to make their appointments and go with them for support and to take notes, helped. HIPAA does not prevent other people from doing this, but some practices don't like it because they worry the patient will no-show. Because the caregiver was scheduling ALL of the appointments, it was much easier to convince them to go to an extra visit when symptoms got concerning.

Also, find a support group for yourself. Caregiver fatigue is real and you don't want yourself to get to they point. Also, other people have had the same problem as you and may have strategies you can try to convince your sister to get treatment. They also will help you remember that you can only support your sister, not make decisions for her, even when you strongly disagree with those decisions.

Best of luck to both of you.
posted by jessica fletcher did it at 12:55 PM on March 15

If you're looking for permission to be outraged on their behalf, you've got it from me. It's infuriating when a loved one has concrete health problems, apparently serious, and they don't address them. It's a tragedy. It almost doesn't matter whether it's due to deliberate choices or inability.

From my amateur research, self-neglect is a big deal, the majority of calls to elder care hotlines. But no authority will do anything if the person is choosing actively not to get treatment. The system is designed to lean in favor of autonomy, assuming competence unless demonstrated otherwise. That said, you can still choose to use what influence you have. Just because someone says no once, they won't necessarily say no three times. I'm not talking badgering, just polite disagreement.
posted by wnissen at 1:17 PM on March 15

Several people have recommended calling an ambulance without her permission. Don't do that unless it is a true emergency, which the symptoms you've described are not. Also, the paramedics cannot treat her without her permission unless you have the legal right to make medical decisions for her, or unless she very clearly cannot make a decision at the time they arrive (e.g., she's unconscious or not in touch with consensual reality). All you will accomplish by trying to get her treatment against her will is to drive a further wedge between you and your sister.

I nth the advice to contact her doctors and provide them info about how she's taken a turn for the worse. Video documentation is great too.

I wish there was something like Al-Anon for situations like this. It can feel like you're being held hostage to your loved one's bad decisions. But you really truly are not responsible for the ultimate outcome here. It's not up to you and you have to let that false sense of responsibility go. She's not your minir child. She's an adult who really truly has the right to make what you think are bad decisions, until and unless she is declared incompetent, which she wouldn't be just based on her reluctance to seek as much medical care as you think she should.
posted by Flock of Cynthiabirds at 7:22 PM on March 15 [2 favorites]

Please remember that your anger is appropriate - your sister is in danger and at risk - but anger AT your sister is not appropriate. She is doing the best she can and is no doubt handling more than she can. The same way you wouldn't be angry at her for collapsing, or needing extra sleep or having trouble seeing things, you're not angry at her that she isn't actively pursing this. You're angry that it is happening to her.

Remind yourself to keep this in mind so that you don't snap at her or say or do anything that will make her think that you are angry at her. If you slip up you'll end up furious with yourself for being a brute and it will compound everyone's trauma. Right now you both need a lot of loving support in an unbearably difficult situation. It may help to find someone you can express your fury and fear to, who is not your sister. An unrelated third party won't think you are angry at them.
posted by Jane the Brown at 9:32 PM on March 15 [1 favorite]

If your sister is expecting only bad news, it's probably hard to feel motivated to make herself go to the doctor or get tests done. Is there a way to focus on how it might make her life better?

Vomiting isn't fun. Maybe the doctor could prescribe something to help with that. If she does tests, it gives her more info to figure out what the problem is and what treatment options there are. Even it the news is worst case and terminal, it would help her get set up with hospice. It could be something minor like an ear infection. It's hard to tell without having a doctor look her over.

It's okay to tell her how hard this is on you trying to take care of her and watching her have problems you don't know how to treat. I'm easily frustrated and tell people "I'm not a doctor and I don't even play one on TV. This situation is more than I can try to help with. You need a real doctor to see if there's anything they can do to help you." I have success with this but it takes time for the person to feel bad enough that it breaks through the hate going to the doctor bit.

For the MRI, could her doctor give her a script for a tranquilizer? It might help her stay calm enough to get through it. Sorry you and your sister are going through this.
posted by stray thoughts at 3:27 AM on March 17

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