“Have a clock clearly visible to the patient. When recovering, a five-minute nap might feel like five hours. It will help the patient feel oriented.”

When recovering from a serious medical incident, it is very confusing for the patient.  Being immobile makes even the simplest task difficult.  When I would sleep, it was induced by either drugs or exhaustion.  It would feel like I had been asleep for hours, when it may have only been a few minutes before pain abruptly pulled me into consciousness.

Knowing what time it was was strangely comforting.  I was constantly doing flawed math in my head.  Being able to see a clock at all times helped me with clarity.  Simple but important.

“Write things down in a notebook that is always handy. Track whatever you can. Having notes on names, dates, and information will be helpful. Always keep it with you because you never know when you will need to refer back for clarification or reach out to a contact person.”

Tracking things is important.  Even though seem clear about the time that you took a drug, you will quickly forget.  Have the caregiver and patient both help each other write things down.  The time a pill was taken; the dosage; maybe even a note for the next time. Especially in the middle of the night when everyone is foggy and task oriented so they can get back to sleep.

Writing things down about the diagnosis, treatment options, possible side effects helps to minimize surprises and clarify confusion.

Writing down details about who sent flowers, dropped off food, or called to give support.  Things that normally seem clear and easy to remember are out the window when your life in the midst of a crisis.

“In the hospital, be an advocate for the AN patient. You will fill the gap left between nursing care and the many little needs that come up at the hospital.”

Considering that I was recovering from brain surgery, it’s not a surprise that I found myself confused at times.  Even though I wouldn’t admit it — even to myself.  My mind was racing inside my limp body telling me that I had to take control and grasp all the details haphazardly flowing through the air.

Having my family always with me helped track when I could — or should — ask for pain meds.  The nurses gave me incredible care.  However, they were busy focusing on multiple patient’s medical needs.  You can only imagine how many distractions they have in a day. Having a family member help keep track of the time, what worked last time, and what changes we were trying was priceless.  They also reminded me of things that I needed to remember, like the need to get up and walk; or the need for a shower 🙂

And then there were the ice chips.  They knew where to get ice chips, Pop-cycles or red Jello (NOT green).  So, everything was only a few feet away when I needed to try food to help manage nausea from vertigo, pain meds, or exhaustion.

Being familiar with storage for bedding allowed her to be self-sufficient when she needed to set up a bed for herself overnight.  She was able to help herself and me without bothering the nursing staff.

“Be the patient’s advocate. Go to doctor appointments with the AN patient. It is hard to remember what questions to ask, or even to remember the answers, when you are still trying to grasp the fact you have a brain tumor.”

There were times when words failed me and I ran out of questions.

Prior to surgery, my family each did research and shared things that they learned. Everyone found different websites sharing various angles on treatment or potential side effects. We were all able to contribute to the compilation of a list of questions prior to each doctor appointment. Having Kayla at doctor appointments helped me capture more of the discussion. Having my family members at the hospital talking to the surgeons after surgery and each day thereafter helped me sort through all the information flying through the air while I was in a fog.

Our shared sense of humor helped us laugh just as we felt tears welling. Laughing kept what we joked as tear “wellage” from turning into “spillage” on more than one occasion. As they say, “If you don’t laugh you’ll cry” – and we chose laughter. When the tears won out, we shared tears.

“Your loved one needs your support. Be sure to take care of yourself. If you end up sick, you won’t be any help to the person who is actually recovering.”

It was critical to have the support of family at the hospital when I had brain surgery.  They each eased into their role of caregiver.  Kayla stayed in the hospital with me overnight and was there to help whenever I groaned or squeaked.  However, she took a break each morning and evening to return to the hotel for a shower, phone call to her husband, or just a few minutes to herself.  During those times, my Dad was there to help me call for a nurse or reach something for me that was just out of reach.

They then paired up for lunch, leaving me alone for just that one short period during the day.  During lunch, they could build each other up for the next “shift”.

They did both get rundown by the end of the week, but without each other – and a daily routine with breaks – they would have struggled to get through.  Whenever they were with me, they were rocks.  Unwavering in their strength and support.