10 Things I Wish I Knew Before My Mom Spent 5 Weeks in ICU

In my 20s, the worst thing that happened to me was 9/11. I worked in downtown NYC at the time and my dad was in the Trade Center  Thankfully, he got out just in time because he came looking for me. 

In my 30s, it was getting dumped by my fiancé a few months before I thought we would marry. It was a devastating and expensive breakup. Oh, and did I mention I worked for Brides magazine at the time? 

Salt, meet wound.

Now in my 40s, I've officially experienced the worst pain of my life -- suddenly and out of the blue, hearing a doctor I just met say if he didn't operate now, my mom wouldn't make it through the night.

It is an out of body experience hearing those words: She. Could. Die. Like a nightmare with your eyes open.  In a flash, you begin making loads of critical decisions -- literally life and death.

And you aren't prepared. 

So, you cry.  And you google.  And you pray.  A lot.  And still, you have a non-stop sick pit in your stomach because you don't know what you don't know.

It was mid-June when this all happened to my family. By sheer luck I had just arrived in Florida two days earlier. A routine trip, or so I thought.  And everything was fine.  Normal.  

Until it wasn't.

We went from a late night trip to the local emergency room -> to an overnight admittance to a hospital 45 minutes away -> to 2 emergency surgeries at 2 different hospitals in 48 hours -> to 2 weeks in trauma ICU -> to getting discharged -> only to wind up BACK in the trauma ICU 2 days later with complications, where my mom remained for 3 more long, frightening weeks.  

And all this during Covid, where the hospital policy changed from just ONE visitor at a time, to ONE visitor total, to NO visitors at all.

Alone when she needed us most.

Thankfully, I had my brother to lean on. And while my mom had good care in the hospital for the most part, NOBODY'S like family -- and everyone underestimates the healing power they bring. So as a family, my dad, brother and I finally brought my mom home 38 days after she was first admitted -- totally traumatized, hooked up to several scary machines, and completely unable to walk or even stand.

Truth be told, she should have gone to a rehab facility, but I believe with every fiber of my being that if we did that (where again she would be alone due to Covid rules), she wouldn't have made it out.

Instead, we turned my parents' home into a rehab -- with registered nurses, physical and occupational therapists, home health aides visiting daily, and every piece of medical equipment you can imagine.  

Did we know what we were doing?  No.  But we were lucky, in a way, to be ABLE to do it.  To find help.  To afford it.  To dedicate the time.  Though, it definitely wasn't easy.

Now fast forward to today, nearly four months later. My mom had her last physical therapy session, and she is walking once again, with the help of a walker and fueled by sheer determination.  The doctors and therapists initially had very low hopes. 

But they don't know my mom.

Her health journey isn't over, but I feel like I can finally breathe again! (While I still pray the worst is behind us.) 

When I look back, there are SO many things I wish we knew that would have made the process smoother, or could have avoided unnecessary setbacks, or would have made my mom more comfortable, or given us all more peace of mind.  I hope you never need it, but incase you do, I've made a list for people with aging parents.

10 Things I Wish I Knew: A Checklist for Caregivers

1. Appoint a Family Medical Advocate: This should be someone who knows the most about a parent's background, who can speak on their behalf when they can't, ask questions when they don't understand, and be with them as much as possible.
2. Find Out What Hospital System Their Local ER Is Affiliated With: Just because the emergency room is nearby, doesn't mean the hospital will be. Or, that it will have a good reputation.  Planning ahead here may help you make a better decision in the heat of the moment.
3. Know Their Doctors' Names and Numbers: This is especially important for their GP, because everyone will ask who this person is, and if you don't know or they don't have one, it really complicates things, especially after they are discharged.
4. Learn Their Social Security Number: Also required for all admitting paperwork, and often hard to remember on the spot.
5. Get a Pic of Their Meds: The older we get the more medicine we take, so take a picture of each bottle so you have it in your camera roll, and make sure you can read the dosage and frequency on the label. While you're at it, ask what their allergies are too.
6. Get a Pic of their Medical Cards: This includes Medicare, any supplement insurance, and any prescription cards.  If you don't have access to their wallet, or even if you do, it's very helpful to have this info on hand.
7. Find Their Checkbook & Find Out When Their Social Security Check Hits: Depending on how long they're hospitalized, and depending on who normally does the bills, you may need to step in and handle their banking. And if they're anything like my parents, we're talking mailing actual paper checks, not online bill paying, so buffer in extra time for them to arrive. And buy stamps.
8. Know Their Phone Password: It might be easy to guess, like a birthday or anniversary, but make sure you know how to get in so you can access their email and their contacts.
9. Keep a Running Log of What Happens: This could be as simple as a text chain with a sibling, because all the doctors and dates and procedures and test results will start to blend together.  Texting updates in real time will help, especially when you are connecting the dots between different health issues or reconciling conflicting advice (because in all likelihood, you will have a better handle on the big picture than the revolving door of medical professionals they will see).
10. Learn Everyone's Names: About that revolving door, you will meet more people than you can keep straight, but you need to remember them for 3 important reasons: Appreciation, Access, and Accountability.  Appreciation because you can call them by name to say thank you, and they deserve that. Access because when you need something or someone, you can give a name that will give your ask legitimacy and urgency. And Accountability, because if someone knows you know their name they are more likely to follow through.
11. BONUS - Find a Local Medical Supply Store or Rental Company: You can get everything you know you need at home, like hospital beds, lift chairs, wheelchairs, walkers, shower chairs, portable bedside commodes, Ensure -- and everything you don't know you need, like portable oxygen concentrators, wound vacs, nebulizers, gait belts, PureWicks, Hoyer lifts, medical transport services and more. Insurance will pay for most of this too.  Just keep talking to people who know more than you, and they'll point you in the right direction.

I wouldn't wish the year I've had on anyone, but I'm so grateful to be going into Thanksgiving with my mom by my side.

I hope you are able to be with your loved ones too.