Not unlike being thrown overboard into a turbulent sea, on May 29th I was initiated into The Hospital Wives' Club. After my husband fainted while walking the dogs up a steep hill, the ambulance took him off to the ER where I, in retrospect, was primarily worried about whether the gash on his nose would require stitches. That feels like another century ago.
In the ER, we learned that he was experiencing Acute Renal Failure -- his kidneys had stopped working and the toxins in his body were at dangerously high levels. The days since then are a blur, marked with ups and downs and mostly downs. My village stepped up and fed my kids, walked my dogs, and supported me while my husband and I battled for his life. Yes, Hospital Wives do battle. And we rely on the more experienced Hospital Wives to teach us newbies the lingo, how the hospital works, who you need to talk to, plead with or scream at. In the interest of diversion -- and because writing is where I go when I need to escape -- here are some rules for Hospital Wives (which of course apply to any caregiving situation regardless of gender or marital status).
1. Hospitals have many rules, procedures and protocols to follow.
There is not a lot of creative thinking going on in a hospital. In fact, hospital management and patient care procedures are written in a handbook and strictly adhered to. I'm sure the policies are based on what has historically worked. That's a lie. I seriously think it's based on what kind of insurance you have, but I'm digressing.
My point is, hospitals discourage free thinking among its care providers. Nobody will go rogue even if you ask them to. This means that the only way you move a mountain is to head straight for the top.
For example: The category of doctors known as hospitalists are the direct line of contact with the patient and his or her family. When I wanted to have a conversation with the nephrologist (kidney specialist), in the first hospital my husband was in, the procedure required that I ask the nurse who then paged the hospitalist who called the nurse back and basically decide whether the situation warranted a call to said specialist. Non-English speakers, the uneducated, and the inarticulate are at a distinct disadvantage here. But it probably doesn't matter because 100 percent of the time I was told that there was no need to bother the busy doctor because "we are monitoring everything, don't worry."
I worry. My friend Barb -- a veteran Hospital Wife who is considering writing a book called "The Best Takeout Places Within Walking Distance of America's Top 10 Cancer Hospitals" -- provided me with the script of what to say to the nurse: "Please ask the hospitalist to get the nephrologist who hasn't seen my husband (who's in complete kidney failure) in more than 36 hours to get his ass in here STAT or she can call me back in the Director of Medicine's office in 15 minutes." Barb advised smiling sweetly as I said it. "No need to antagonize anyone," she said. Lo and behold, guess who showed up 14 minutes later?! And yeah, we wound up moving my husband to a large teaching hospital where specialists didn't need to be threatened to see him.
2. Google is your friend.
Just be mindful of which sites you rely on. Mayo Clinic is good; others, not so much. My sense is that most doctors need some help explaining things to patients and Hospital Wives.
3. If you have a doctor in the family, involve him.
It doesn't matter if your second cousin's husband is a neurologist and your patient's problem are his kidneys. Doctors speak to doctors differently than they speak to Hospital Wives. They show them more respect. Get over your hurt feelings and the urge to scream "Don't talk down to me, asshole, I won a Pulitzer." That would be antagonistic. Much better to have your second cousin's husband talk to him and relay what's going on.
4. Everyone else's life continues.
During your initial days as a Hospital Wife, you will be startled to realize that the world around you didn't come to a screeching halt when you did. You will get an email from someone angry that you didn't respond to them. You will hear people talking about a basketball game like it was truly important. You will still be expected to deal with the gas company and the bounced check you forgot to cover and the email from the library saying books are overdue. You will be told that the fact your husband is in ICU doesn't mean they will waive the late fee or not cancel your car insurance.
5. Your world shrinks.
You will hear about a college shooting five miles away from the hospital and immediately wonder if this means you won't be able to get there. Traffic is your enemy. It is the deciding factor whether you can get home to eat dinner with your kids.
6. The "how can I help?" syndrome requires patience.
OK, so your patient is getting worse, you have been waiting hours for someone to tell you what's going on, machines in the room beep constantly, you are bleary-eyed from spending consecutive 22-hour days at the hospital and the last time you saw a shower was ... who knows? Friends will come to your rescue. They will offer to bring over meals, pick up your kids, cover you for the coach's gift before the team banquet and stare down your dogs in a barking battle of wits over the dogs' need to go pee outside vs. the fact there is a stranger in their house.
A good Hospital Wife knows to accept help. But just know that nothing is ever that simple. Friends will offer to bring you meals, but want to know when you'll be there and you can't say. They offer to help drive your kids where they need to go, but can't do it when you need them to. They will text from the supermarket offering to pick up groceries but want you to swing by to get them -- and you have no idea what time you will be headed home, if at all.
Experienced Hospital Wives accept this. It's the realization that the rest of the world is continuing with their lives. So far, I have still been able to wrap myself in the warmth behind the offers -- the good intentions and concern.
Still, I would have to add this admonishment to well-wishers: Don't offer to help if you don't mean it. And please don't let your offer to help turn into another problem for the Hospital Wife to solve; her plate is full. There are various websites where meal trains can be established to coordinate the offers of help.
7. Keep the Hospital Wife company.
One of the greatest gifts you can give to a Hospital Wife is to keep her company in the hospital. Hospital Wives have a huge need for another adult to be there with them and their teenage kids don't count. Hospital vigils last for days -- in my case, weeks -- and are lonely. Hospital Wives don't necessarily even need conversation -- in fact, sometimes they are just too weary to form words -- but they need someone to sit in the room while they run to the bathroom in case the doctor pops in. One of the greatest acts of kindness was when two friends came to the hospital with me and ran hospital errands -- asking the nurse for an extra pillow, running down to the cafeteria before it closed, googling the inspection records for the rehab centers that my husband could be headed to when I just couldn't.
8. Every day has at least one crappy part.
Hospital Wives know that the caregiving experience is a roller coaster. One day your patient is doing fine and the next day he's back in ICU. Medical care is basically educated guesswork -- sometimes trial and error. Mostly, you wait and see -- which for the genetically impatient like me, is extremely hard.
9. Hospitals are always cold, so bring a sweater.
There is something about germs or bacteria not growing as rapidly if the room is kept cold enough to make your nose run. I carried a fleece jacket with me at all times and after the first day abandoned my sandals in favor of socks and sneakers. Other must-have items are a charger for your phone; something to write down or record what the doctors are saying; and a water bottle for yourself. You will get dehydrated just sitting in the frigid hospital room. I was never able to sufficiently lose myself in a book, but I did play a record-breaking number of Merged! games.
10. CaringBridge.org and other similar sites exist for a reason.
No Hospital Wife has the energy to answer every text, call and email that comes in inquiring about your patient's health. I formed a text group for my closest friends and another for people in our community who reached out to ask how things were going. And just because someone asks, doesn't obligate you to share anything. "Thanks -- I'll let him know you reached out" was my stock answers. CaringBridge allows you to post an update to a larger group of hand-picked invitees. They can respond, send good wishes, etc. and your patient can go through them as he feels like it.