Thursday, April 24, 2014

Lessons From the Well Spouse - Help! I'm Young and My Spouse Was Just Diagnosed With...

... fill in the blank. Cancer, MS, any kind of potentially deadly or debilitating condition. Doesn't matter. All the advice will be the same.

So recently a couple of friends' spouses have been diagnosed with potentially deadly or debilitating conditions. Evidently I've become the go-to person for how to deal with your spouse's medical emergency when you're young.

First, let's define "young". If you
1. are under the age of 45 or
2. have minor children or
3. if someone were to say, "well they had a good run" in reference to your spouse you'd want to punch them or look at them in disbelief or
4. if your spouse were to pass you're sufficiently young to be facing multiple decades of life without them
... you count as young in my book, at least for this exercise.

Why is it important to make a distinction? Simple. Advice for the senior set and their spouses would emotionally destroy you. It's that simple. A lot of advice for seniors in your position refers to things like  "acceptance", "quality of life" or "preparing for life without your spouse".

If you automatically thought "fuck that shit, dying isn't an option and I want to FIX this" then this is written for you.

So here's a rundown of things you need to know that nobody (other than survivors of this situation) will tell you. A lot of examples will center around cancer because all examples are from my own personal experience, but other conditions will have similar issues.

There's 2 things you need to do immediately for your own sanity.
1. Get a piece of paper, or your phone, or your computer and make 3 lists. Title these lists "People Whose Opinions Matter", "Give the Smile and Nod Treatment", and "Don't Talk to Unless Required". Later you'll be tempted to make a list of "People I Want to Physically Harm" and "Never Talk to Again" but those are extreme reactions you want to avoid.

Everyone in your life that's closer than acquaintance (and some acquaintances) will end up on one of these lists. Everyone. You'll soon find out why.

For now, populate these lists with close friends, family members, and in-laws based on how you already interact with them. There will be a lot of movement from one list to another, this will cease to shock you after a while.

2. Set up your social media so you repeat news as few times as humanly possible. If you have a blog link your blog to Facebook and Twitter. If you don't, consider making one or accept that you'll be using Facebook for news dissemination. The point is, every time something important happens make it so you can post it once and reach as many people as possible. Your goal is to make as few phone calls as possible and respond to as few questions as possible. This will help your sanity immensely.

Now on to what you should expect to happen and how the world will work from now on.
1. You will be in shock initially.
How long it takes this shock to fade will vary depending on the situation and the person. You will feel overwhelmed, despair might be your new friend, and you'll have lots of depressing thoughts. This is normal and natural.

If you express this to anyone and they tell you to "get over it" or "just accept it already", move them to the "Don't Talk to Unless Required" list. It will just save time and irritation.

2. Transition as fast as you can into the warrior mindset.
If someone tried to kill or harm your spouse right in front of you, what would you do? Stand back and wring your hands over your helplessness, or find a way to kick their ass? The faster you wrap your head around cancer being the enemy, or any other condition being the enemy, the faster you'll transition into a place of power.

Fight. Pretend you're in a war and the opposing army is attempting to invade your village and kill everyone in sight. The goal would be to take out the threat while doing as little damage to the village as possible.

Your goal is to take out the threat to your spouse's health while causing them as little harm as possible. You're not powerless, not in the least. The sooner you recognize you have the means to fight, the better. You can find a good commander in the form of a good doctor. You can find good mercenaries, er, specialists. You can build your own army.

3. Knowledge is power.
Research your enemy.

Find out what you can about the condition, how it's treated, how people who have survived managed to survive. Find out its weaknesses. Figure out how to exploit them.

As a bonus you'll understand why the doctors are making their recommendations and how the battle will proceed. This will insulate you from further shocks.

Preferably do at least a little bit of this research before spreading the news so you have a basic understanding of what's going on that you can communicate to other people.

4. Write your speech and practice it BEFORE spreading the news.
"______________ has ________. The doctors think we should do _____________. We're doing some research and figuring out how we will handle this. We don't have a firm prognosis yet, we'll let everyone know when we do. The next time we will have any information is (date)."

Yes, you need a speech. Because you need to be prepared for...

5. People will expect you to help them deal with the situation.
It's not fair, in fact it's pretty horrible. There will be some people who expect you to manage their emotions and calm their panic. Sometimes it's understandable, like your mother-in-law being in shock and not knowing what to do. Sometimes it's really really not. Don't be roped in unless you want to. By having a speech prepared you'll know what to say. Don't let them ask a ton of questions before you're ready to answer them. Just let them know when you'll know more and maybe when you're in less shock you'll be able to help them through the process. Also it will keep you from engaging when you find out that...

6. People are breathtakingly ignorant and can be utterly self-righteous about their own ignorance. You will discover this while spreading the news. After a while it will cease to shock you.

How ignorant, you ask? Well this really requires a post all its own, but people react in different ways to news. Some of it will be an opportunity to educate. "Is that like ______ cancer?", "will they lose their hair?", "is that what Michael J Fox has?" are opportunities to educate or let them get their own education. If you want to spend the time educating them, do so. If not, give them the correct spelling and send them on their way. You can decide whether they're on the "opinions matter" list or "smile and nod" list later.

That's benign ignorance though. Benign ignorance is much preferable to blamers and fixers.

Some examples of blamers include "well if they'd just been on the right diet" or "it's all the chemicals we use now" or "what did they do to deserve this?". Yes, people will say this stuff right to your face in your hour of need. The need to find something to blame to make themselves feel better. Doesn't matter if they're right or not, blamers need to be put on the "don't talk unless required" list.

Less horrible but pretty horrible are the fixers. "If you take this supplement it will go away", "if you smoke enough pot you'll be cancer free", "if you pray enough you'll be cured." Occasionally they're somewhat correct. Most of the time they're breathtakingly ignorant in a harmful way. Assess their intentions (honestly trying to help or promoting pet cause?), tell them you'll look into it, and place them on the "smile and nod" list or "don't talk to" list accordingly.

7. People are also breathtakingly insensitive and clueless.
Sometimes they just don't know how to react. That's fair. However far too much of the time it's clear they don't even hear the words they're saying.

"Oh I'm so sorry your husband has cancer. My dog had cancer so I understand what you're going through."
"My aunt had that cancer. She died."
"My nephew's wife died from cancer. He killed himself later."

Refrain from killing them if you can. Assess their intentions, assign to lists accordingly.

NOTE: I told you there would be people you'd want to harm. Also, by distributing news via Facebook or another group medium you can keep how much you deal with these people to a minimum. Hopefully you'll have a few relatives or friends on your friends list who can point out how stupid they're being and model better responses. Please let them.

8. All medical facilities are not equal.
Some really are better than others, have better doctors on call, have nicer nurses, have better specialists and equipment. If you can get to a medical center or hospital that specializes in your condition, do so. The choice of where you get treated can be the difference between life and death.

9. Doctors are neither omniscient nor universally competent.
We spent 5 years trying to find out what was wrong with Chris. When we found out what was the wrong the first surgeon wouldn't operate until he lost enough weight. She wanted him to get a gastric bypass first.

If we'd gotten the gastric bypass Chris would be dead. He'd have no way to "fix" the medication issues he's currently having.

After the second surgeon removed the tumor we found out Chris would have been dead within a couple of months.

We'd gone through 8 highly respected doctors and 1 highly respected surgeon. The people who actually were responsible for saving Chris were 1 physician's assistant, a stubborn endocrinologist, and a cocky surgeon.

Always get a second opinion. Always keep pushing. Follow your instincts. Don't believe that the doctor is necessarily correct just because they're a doctor. The field of medicine is far too large to be understood by any single person.

Keep going until you find a doc and specialists who 1. you trust and 2. treat you like an individual, not a bunch of statistics. Good doctors research what's been done before and know what *usually* happens in 90% of cases. Excellent doctors understand it's possible they're dealing with the other 10%.

The best doctors will appreciate it when you bring them what you found out through your research and will look at the information themselves to see whether or not it applies. Which brings me to...

10. Rules? What rules?
Some nurses will hate me for saying this but...

You're the spouse. Sometimes the rules don't apply to you.

Whenever you're given paperwork, particularly HIPAA paperwork, make sure you're listed as someone who can receive medical info. Go to every appointment you can. Take notes. Be extremely knowledgeable. The docs will respond to you accordingly and will respect you. Where they wouldn't trust most spouses with info, they'll trust you.

When you get to the hospital, be calm. Be collected. Be knowledgeable. Take care of your spouse. Ask the nurses questions about when you should call for help and what to watch out for.

Do this, and you'll find out visiting hours no longer apply to you and they'll move mountains to make sure you can stay with your spouse. Make it clear you'll make life easier, not harder, and overworked nurses will happily bend the rules for you. Cots and extra pillows will suddenly show up and food will be found for you in the middle of the night.

Become a pain in their ass or cause your spouse distress and hospital "policies" will spring up from nowhere.

11. You're now part of the "tribe", and the tribe has the nicest people you'll ever meet.
All that faith in humanity you lost? It's coming back. Once you find people who have gone through what you're going through, or even something similar, you'll find kinship you won't find anywhere else. When we went to have the genetic screening while I was pregnant, the doctor who went over the results with us found out Chris had cancer. Turned out she was in the middle of treatment for colon cancer. We talked for hours about how no one else "got it".

People who have been through cancer know what it's like. They'll help people who are new to dealing with their conditions. The spouses will help you. It's a big support network you never knew existed.

When you find other people who "get it", hold them close. You'll need them. Because...

12. It's never over.
The declaration of remission is just that. Remission. Cancer can always come back in other ways. What you did to survive might try to kill you, just like it tried to kill Chris. The aftereffects last for the rest of your life.

Even if your spouse is "cured" of something you'll spend the rest of your life questioning every symptom and knowing how close you came to permanent loss. You'll never be the same. You'll keep looking for the next invading army.

So don't treat it like a "temporary" crisis. It's not. It will sap your strength for years to come. So take care of yourself, live as much as you can in spite of what's going on. Adapt to your new circumstances. Life goes on.