Day 1: Get Organized | Guest Blogger Jaci Rann Cohen

Posted by Reeve Staff in Daily Dose on November 29, 2017 # Caregiving

The first 24 hours after my mother’s accident are seared in my memory like a vivid movie that I watch over and over in my mind’s eye. I am able to recall specific moments so clearly that it is as if these events took place just this morning. I can hear word for word the late-night phone call, I can smell the cab that drove me to her side, I can see my mother in the hospital bed, and I can feel the chair they brought me as sweat formed on my neck and the room seemed to swirl. I hear my sister-in-law’s voice: “She needs a seat. She’s going to faint. Hurry… she’s pregnant”.

While it is frenetic and chaotic, when I replay those first few hours of what would be a year's long journey, I recall these events in slow motion. Almost as if my mind slows things down so that I am able – even all these years later - to absorb the gravity of the situation.

Soon after the initial shock of my mother’s new reality wore off (does it ever fully?), information began flying at us at the speed of light. There were so many decisions to be made, so much research to be done, so many people that needed to be involved. My very small family looked around at each other and we quickly realized that we were now an army going into a complicated battle and that we needed to organize our strategy.

The reality of the situation was this: we quickly learned that our family was as uninformed and unprepared for this situation as one possibly could be. We gave ourselves about five minutes to freak out and then we got to work. First and foremost we realized that we would need to document what was going on around us. We wouldn’t always be together, but we would always want all the information.

Here’s what I would recommend that everyone do as soon as the phone rings:

  • Understand that you now have a new job: you are an ADVOCATE. Nobody cares about your loved one like you do. You are in a hospital, many people are in bad shape. You cannot be shy. If you want attention, there will be some days when you need to jump up and down and make it happen
  • Get a notebook and pen. You must write everything down. Believe me, you will not remember half of what is said to you. Over the next days, weeks and months having your notes will help you to recall the details of the conversations later when you are back home and your head is spinning from exhaustion and information overload.
  • Download an app onto your phone that allows you to record and organize conversations. Use it in the important meetings where you need to be listening (not note taking) and transpose the info into your notebook later. You will have them for reference, and I assure you that you will go back and listen again (and again and again). ALWAYS ask the doctor, the nurse, the administrator their name and what the next steps are. Write that down too.
  • ALWAYS ask doctors and specialists for their business card. Doctors have them in their pocket. In emergency rooms, shifts change and it's possible that you'll have a very hard time tracking down the same person twice. Get the contact info while they are standing in front of you. Even if you think you won't need it…get it. Keep the cards filed by specialty - you’ll never remember the names. Write the date on the back of the card so you can easily reference to your notes and recall what this person said to you.
  • Connect with the most senior person on the emergency team that handled your loved one when the arrived at the hospital. Find out if they will remain on your case. Get a download from their perspective. They will have details that others will not be able to share with you. If it's an emergency room doctor, you may never see them again. This information can be very important down the line when you get to rehab or home.
  • Connect with the most junior person on the emergency team that handled your loved one when they arrived at the hospital. This person is going to be more readily available to you. Nurses are your friends. These are the people that make sure your loved one is comfortable and cared for. Be kind, be grateful. Bring them cookies. When you have to go home to rest, you will only be able to do so knowing that these angels are caring for your loved one.

This next one is important, so I’m separating it from the rest. If there is anything that I can impart it is this:

  • Ask EVERY single question. Everything that comes to your mind. If you need to ask it 20 times, that is okay. You keep asking until you get an answer that makes sense and provides you with a clear action needed or a resolution to whatever you are dealing with in that moment. Once you have the information it is yours to handle. Be aggressive, even if it is uncomfortable to you. Don’t worry about upsetting the doctor with what you think might be repetition, push through your own B.S. They deal with this every day. You are in uncharted territory and they have empathy for that, even if they seem annoyed.

And finally, I found this one to be incredibly hard:

  • Take care of and be kind to yourself. This is an emotional journey. You need a level head, you need boundless energy and you need to stay focused. Be sure to have a personal support system, whatever that looks like for you. Don’t be afraid to access the support, this is not the time for pride.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.