Getting Started

If you have been plunged into a full-blown SibCare crisis, you may feel overwhelmed to the point of paralysis.

Here’s the key: you don’t have to do everything and you don’t have to do it all right this minute.

Figure Out What’s Happening

This may seem straightforward. It may even be straightforward if you and your sibling are close and have been in frequent contact, discussing medical problems.

Just keep in mind that even if you have been in on the whole sorry mess from the beginning, you may not always have been paying full attention. Indeed, there’s a good chance you’ve already inadvertently missed something important.

Matters are even more complicated if you’ve been out of touch. You are likely to be clueless on many fronts. You may not know much about your sibling’s personal life, work situation, health care coverage, general health, financial stability, or spiritual beliefs. Some of these can wait, some are probably urgent, and with a little bit of luck, you won’t have to get deeply involved in others.

Have a Conversation

Talk to your brother. Even more important, listen. And if he clams up and reaches for the remote, resist the impulse to throttle him, even if that’s how the two of you generally have resolved disputes.

Be prepared with a list of questions so you won’t forget something and have to bring it up again later. Apologize for invading his privacy and make sure he understands that you wish none of this were happening. Make notes, and if he’s uncomfortable about that, explain that it’s so you won’t need to ask again, ever.

Don’t be judgmental about anything. “I told you so” has no part in this conversation.

If your discussion goes down a side alley, follow it until you recognize a clear dead end. Gently rein in somebody who’s going too far astray. And if you know that your brother tires easily, keep focusing him forward to cover as much ground as possible before he fades out.

Have him go back to the beginning. Try to find out what—if anything—led up to the current problem. Was it truly a bolt from the blue?

Don’t Take Anything for Granted

Keep in mind that your sibling and others may or may not have the facts straight.

When you’re sick and in a medical office or hospital room, you don’t always hear things accurately. Important information may sail past as you grapple with the shock of what you just heard. Then when you tell family members, you may inadvertently leave out additional key elements because your anxiety is cresting at tsunami levels.

The wonder is that any particulars at all come through correctly. It’s like a grown-up version of the childhood game “Telephone” except that the consequences are far more serious if you get the story wrong.

If you think this may be the case, don’t challenge what your sister says right away, even if that’s your normal style. You may think you’re being solicitous, while she simply finds you overbearing. Take your time and do your own research, or deputize somebody you trust to do it for you.

If you learn things that raise questions that she didn’t address, or reveal treatment possibilities that never came up, present this information in a positive and helpful fashion. Even if you’re gritting your teeth every second. Hey, I think I found something promising! is a lot more effective than How could you have been so dumb that you missed this?

What You Want to Find Out

Were there symptoms that your sibling chose to ignore, or did the stroke/heart attack/as-yet-unexplained collapse actually occur without warning? Were there witnesses to the event? Was 911 called? Did your brother ride the ambulance with paramedics performing CPR? Was he admitted through the ER? Any emergency surgery involved? ICU time?

Is there a diagnosis?

This is a biggie. A diagnosis isn’t always a given and it isn’t even always right. Waiting for it can be hell. But once you have a diagnosis, everything moves onto new planes and into new stages.

If there is a diagnosis, what has your sibling been told about it?

Pay attention here, but don’t assume that his information is absolutely correct, or even mostly correct.

Do Your Research

You need to learn as quickly as possible about the specific nature of what ails your sibling.

You may already have some of this knowledge. You may have experienced the same problem yourself, know somebody who did, or be aware of a strong family history. There’s also a good chance that you never heard about Wellington’s Wallop until your brother called to announce his diagnosis.

Once you have some idea of what the medical problem is—however vague that idea might be—start developing your own information sources. Education will become your close personal friend throughout this entire experience.

The critical thing to remember in the beginning is that you don’t have to know everything immediately or become the world authority on Wellington’s Wallop. All you need to get started is the nature of the immediate problem and how it is being addressed.

Start by plugging “Wellington’s Wallop” into a search engine and look for a foundation with a toll-free number. That number will be answered by somebody who knows about the disease, customary treatments, local support groups, and all kinds of things you haven’t even had time to think about.

You can even do some of this research during the nail-biting period when there isn’t yet a definitive diagnosis but you know you’re dealing with a problem related to a particular organ system.

Write Things Down

Keep in mind that in the early stages of any medical situation or crisis, information is the primary currency.

A lot of people go into white coat amnesia after visiting an Emergency Room or doctor’s office. Sometimes they’re so stunned by one part of what the doctor is saying that they don’t even hear the rest.

If it’s bad news, you’re even more likely to lose memory function. And if you weren’t already making notes, you sure aren’t going to start slapping pockets looking for a pen and some scratch paper after you hear the word “cancer.”

Information that isn’t written down can sail off into the sunset with nobody the wiser. In a serious medical situation, this can also cost you time. If you are just coming into the medical scene, see if you can actually look at something official that has the diagnosis on it in words, not medical mumbo jumbo or billing codes. Then start asking questions.

What treatment has been proposed? When would this treatment begin? Have other options been discussed?

Is there a second opinion? Maybe even a third?

Notify People

What you need to do and how fast it has to happen mostly has to do with the nature of the situation you’re in. If somebody is in ICU with a sudden and shocking prognosis, time matters. If a lifelong jock is getting a knee replaced, there’s a lot less urgency.

Start with the obvious family and extended family members. If your sibling doesn’t want people to know, respect that, though you may gently argue the case for shared information. Friends and neighbors may already know, particularly if an ambulance was involved.

Keep specifics off social media unless you have specific permission to post information and even then you should be VERY discreet. Your customary level of sharing information might differ significantly from your sibling’s, and you are not the one whose private information is being put onto the Internet, forever.

Widen the Circle of Inquiry

While you’re clarifying the problem at hand, be sure to also widen the circle of inquiry.

Neighbors, coworkers and friends of your brother’s may have observed something that worried them. Maybe they didn’t say anything to him. Maybe they did and he brushed them off. Now is the time to find out whatever you can from whoever’s been around.

You’re essentially looking for witness statements here, so follow up just like your favorite television detectives would. And don’t forget other members of your sib’s immediate and extended families, who may have been holding their breath with a sense of doom, waiting for the axe to fall.

The people you come in contact with on your sibling’s behalf are likely to be concerned, whether on a personal or a medical level. (Trust me: the unconcerned will either never show up or will disappear quickly.) Ask friends and coworkers what they might know about what’s been going on, and be as low-key as you can. That way, they’ll be more comfortable sharing their concerns and memories with you.

Keep in mind that friends don’t trash friends.

If you approach your brother’s buddies by saying what an idiot he was for never getting any exercise and drinking too much and subsisting on deep-fried everything, they’re not going to like it. Nor will they be inclined to cooperate with you. They will more likely leap to his defense and think you are an unsympathetic jerk to be kicking him when he’s down.

Being judgmental with your sibling’s friends is no better than being judgmental with your sib.

Make Short-Term Arrangements

The nature of what needs to be done will change with time, and in the beginning those changes can occur quickly. Don’t try to plan too far down the road until you know what road you are actually on and where it is going. If you are a planner by nature, this can be hard.

Pay attention to who’s offering help, write down names and contact info, and press folks into service right away if you can use them. Be specific with requests because usually people have no idea what is needed or how to help. (You may be one of those people, at least for a while.) Do you need airport pickups, rides to treatment, meal deliveries, or somebody to mow the lawn or shovel the driveway? Try to match talents and availability.

Be flexible, and if something isn’t working, or didn’t turn out to be as important as you first thought, feel free to make changes.

And don’t think you can do everything yourself. You can’t.

Respect The Patient

This is absolutely critical.

Your new mantra is: This is not my illness.

If your sibling has strong feelings about what should and shouldn’t be happening, pay attention. If what he wants is totally unrealistic or maybe even impossible, try to bring him down gently. But work with him to try to get to decisions that are reasonable.

Nobody likes a bully.

Sick people particularly hate them. They’re already experiencing a sense of bewildering helplessness, caught in fast-rushing waters through nasty medical rapids. So be as gentle and caring as possible.

But if reason doesn’t enter into your sibling’s thought processes at the moment, try to figure out ways to work around him for the time being if necessary. Making progress is not always synonymous with keeping the peace.

It may be that your sib’s treatment choices are based on foundations with which you totally disagree: holistic regimens instead of 21st Century medicine, for instance, or meditation and prayer instead of radiation. These choices may make you scream and rant and throw things at the wall, but your sibling is the one who gets to make them.

This is not your illness.

What you might do in similar circumstances may be entirely different. In fact, there’s an excellent chance that’s the case. Actions, reactions and inactions may differ for each and every member of a large sibling cluster, but only one of you is the patient just now.

So that is where the decision making needs to ultimately land.

With the patient.

Reminder: You don’t have to do everything, and you don’t have to do it all right this minute.