A sense of humor will give you a better temperament than frustration. Learn to laugh at yourself. It will help you to feel less self-conscious.
My family is always joking around about things and it was no different with brain surgery. We laughed about pretty much everything that we could to help lighten the heavy burden that we were living. When I say “we”, it did not escape me that even though I was the one in bed bandaged and tangled with medical equipment, “they” were tasked with keeping my spirits up.
When I was home, we laughed when my brother had to push me up the stairs because I didn’t have the energy to make it by myself. We laughed that I used a ski pole to navigate before I got a cane.
In Florida, when I listed to the right while walking on the beach, my friends were always between me and the ocean. “No way. I’m not going to tell your family I let you walk alone and you veered into the ocean.”
When I give the wrong answer to a waiter’s question because I’m trying to fake that I actually heard, it’s humorous to see their expression when saying that I’ll pay my bill with “French fries, not chips.”
I always strive to be a “Pleasant Miserable” Person when I’m having a bad day. I strive to find laughter and joy from a vantage point that is, simply, ridiculous. A Brain tumor? Deaf in one ear? Unable to smile normally? Unable to move because of head pain more often than I want to acknowledge? Yea, you gotta laugh. . . once you stop crying.
Sometimes you need a thick skin (From Gabby) – “I’m here! Let me lie on top of you with my whiskers in your face. OH, sorry, I know you didn’t MEAN to push me off the bed. Here I am again in your face.”
(Gabby is now 15 – this picture is when she was a bitty kitten)
While this sounds obvious, it is worth pondering a bit. We are all driven to fix things and want to fix broken thing in the lives of our loved ones.
However, some things can’t be changed. Patients – who were simply “people” the day before – need to talk through what they’re experiencing. Brain surgery is something that leaves one feeling unique and isolated. Unique because it is not common to have anyone in your immediate circle of friends and family who have had brain surgery. Isolated because the experience puts one’s life into a tailspin. Whether a short and uneventful tailspin or an unending circling of the drain, one’s life is effected forever.
Listening, without trying to solve anything, is a skill we can all work on. Being listened to is appreciated in times of high stress. And then, when you feel that you have listened thoughtfully and deliberately to a point where the patient is repeating – distract by finding something “normal” that you can do together.
The word “Speculate” became a joke in my family. After a shocking diagnosis, we speculated nonstop about what treatment options would be available to me. Once surgery was determined to be my only option, we speculated until the day of surgery about what that experience would be like, what the outcome would be, and anything we could think of. Speculation was the word that we would throw out to each other when it was time to take a break and live or talk about something else. The combination of speculative talk and continuing to live life helped me get through a challenging period in my life.
Have a good hand-off if caregivers change over the first couple weeks. That will ensure whoever is care giving has all the information needed. Details on medication schedule, eating, resting, and any limitations should be discussed.
In the hospital, my family took turns being with me in the hospital room. Then, for the first few weeks, my parents alternated with Kayla as my caregivers. As they switched back and forth they would fill each other in on the current status and any changes to medication, activities, or doctor’s orders. It was helpful to have them share so that we had consistency in care.
Allow yourself to grieve because there is a new you. It may be pretty darn close to the old one, or possibly quite different. But then you have to get up.
There are many people who have brain surgery to remove an Acoustic Neuroma and return to life as they knew it. Not everyone is significantly altered. However, many of us are changed forever. It’s ok to be sad about the loss of our previous selves and lives. I found that it was helpful to recognize those differences, to grieve the change prior to accepting the new me. Then it was time to get to know the new me and move forward once again with life.
Stay in the hospital overnight if possible to care for the patient. I found something almost always came up AFTER the nurse left.
I was confused, even though I didn’t think I was. Having Kayla there overnight helped immensely. Hospitals are very accommodating to make caregivers as comfortable as possible. Kayla had a cot set up for her. It help them too so that they can focus on medical care.
Years before, Kayla was in the hospital as a pre-teen. She had her appendix out. In the middle of the night she was itchy from a drug interaction. She became agitated and needed red jello. The only jello that they had on the floor was green. In hindsight it is a funny story that we laugh about, but I was able to help her get what she needed.