Category Archives: Caregiver Tips

SURVIVAL of Holiday Festivities – The Acoustic Neuroma World

Hi everybody!  I’m here, just haven’t had anything to share for awhile.  However, that changed with the season. For some, this will be the first holiday since a craniotomy or radiation. Or perhaps the first season of watch and wait after finally learning the source of symptoms. I thought I’d share my personal tips for survival.

Holidays are a challenge for those of us who have: (check those that apply)

– Head hurts (no further explanation needed)
– Tinnitus (loud, not just ringing, but buzzing, radio station sounds, ringing that gets worse in noisy settings)
– Single-sided deafness (doesn’t just cut hearing in half but confuses brain signals which amplifies background and side noises while ignoring voices that are right in front)
– Full or partial facial paralysis (making eye dry and/or self-conscious about smiling or eating)

PRIOR to Festivities, if possible:

– Take a nap
– Pack eye drops & tissue
– Pack as much humor as you can
– Think about packing one earplug
– Pack pain medication

DURING – Once you are “there”, wherever that might be, consider the following:

– Be calm. No need to scurry or move. Keep your head calm.
– Find the most comfortable chair (one high enough to have a headrest is heaven).
– Sit as far from speakers as possible.
– If possible set with your deaf ear toward a wall so you won’t have to strain your neck to hear (which may make your head worse) — and you won’t inadvertently miss someone approaching you and talking with you being aware. “What?” being our too familiar response to that jolt of awareness. (ears being on the side of the head doesn’t help single sided deafness, but that’s another discussion)
– Smile with your eyes. Sparkly eyes pull the viewers eye away from the mouth.
– Don’t stress about not hearing. Seriously, don’t get stressed.
– People watch – really study people around the room. It’s fun to watch mannerisms. I saw a play in a foreign language once so hearing didn’t matter – I got the story through physical movements of the cast)
– Focus on what you have — not what you’ve lost. Perspective is a good thing. Loss is real, but only living can bring joy.
– Once in a while close your eyes. Inhale, exhale and identify holiday smells.
– Focus your hearing on laughter and joy.
– Take mental snapshots. (Maybe phone pics too) but the idea of a deliberate mental snapshot is more likely to be saved in your memory for later retrieval (see below for your first opportunity)
– Laugh a bit.
– Take a walk or step outside for some air and silence (depending on weather where you are – here in Michigan you may freeze in place)
– Drink a lot – of water (alcohol at a minimum as you know your ability to handle, but it usually doesn’t help any of our issues)

AFTER – Once you’ve survived and gotten through a night of loud noises in your head, ponder these ideas if you can:

– Plan for morning after hangover and if possible stay in bed.
– Accept this opportunity to be still and rest
– Close your eyes and think past head pain to go through your mental snapshots. (see above). Remember the funny, the adorable, the cringe worthy. . .
– Go for a walk. Sometimes I have to start really slow, but the rhythm of walking seems to be calming to the head and the relative quietness of outdoors (if possible) are calming.
– Drink a lot of water.

I’m sure many warriors have other ideas for surviving, but here are a few of mine.

Happy Holidays!

Caregiver Tip – Time is the Ultimate Gift


I love spending time with my friends and family.  Yesterday, I spent time with Kayla and smiled after leaving.  I talked to Kendra on the phone and felt warm and connected even though she’s across the ocean living in Europe.  Sometimes after being with the people in my life I don’t recall the conversation, but always remember the time spent.  It gives me strength.

One of my friends laughs most at a line in my book where I describe my brother as “giddy.”  He normally isn’t, but was after a short phone call to me in the hospital right after my brain surgery.  I could hear in his voice that he was relieved that his sister was going to be OK.  It was short phone call, but encouraging and meaningful.  I found strength in his uncharacteristic giddiness.

I recall my friends visiting me right after getting home.  They were each there for only a few minutes, but they were moments – not just time.  Margie helped me feel understood in my terror.  Nancy pushed me forward, “You’ll be fine” in a confident tone.  Time given as a gift to me was like fuel to my spirit, building strength to move forward.

As a caregiver, the ultimate gift is time.  Just sitting with someone is very important and helpful.  When someone is facing a medical crisis or recovery, you are most likely not going to have an answer or solution.  There is a time to do research to help educate and evaluate treatment options, but there is also a time when you just need to sit. Together.

God tells us to be still at times and loves to have us spend quiet time listening to Him. Speaking to Him. Being together.  Pulling strength from that relationship.

We only have so much time in our day, our weeks, and ultimately our lives.  Sharing it with others is the ultimate gift.

Caregiver Tip # 13 – Listen A Lot


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.

Caregiver Tip #12 – Arrange a Hand-Off Between Caregivers

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.


Caregiver Tip # 11 – Stay in Hospital

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.


Caregiver Tip # 10

Be assertive if necessary to get enough information to understand the doctors and nurses

Many of us are people pleasers.  Layer on that our intimidation with doctors and medical jargon.  A doctor can be talking to three people who are all nodding in agreement.  Answering “no” when asked if there are any questions.  Only to look at each other in confusion once the doctors leave.  “What did he say?”  “What did she mean?”

ASK.  Remember that especially in the medical environment that there are no dumb questions!

If a doctor or nurse is seemingly in a hurry, stop them if you need more information.  “Excuse me, but could you please clarify XYZ for me?  I didn’t quite get it.”  They do want you to understand.

Caregiver Tip # 9

Track pain meds both at the hospital and at home. It may seem easy to remember you took something at a particular time and can take more pain medication at a specific time, but the patient will become confused and forget. Especially when on narcotics.

Tracking everything is important and this was mentioned in another tip.  However, specifically for medications.  Pain medications dull our senses, even we don’t want to admit it.  For some reason, I’ve learned that pain medications inhibit our ability to admit that we’re confused!  So WRITE IT DOWN!

One thing that I did once I was feeling better, and still keep up to date, is create a spreadsheet on my computer that tracks everything that I take.  Supplements, vitamins, and all prescriptions.  I have columns for morning, lunch, dinner and bedtime.


Caregiver Tip # 8

Encourage the patient to continually stretch to new distances, times, or whatever they are working on. Encouragement is an amazing way to get a patient to walk around the halls one more time, sit up just a little bit longer, or to eat a little more food.

I didn’t even want to move after surgery, but it is important to start moving as soon as possible.  Having my family right there pushing just enough was amazing.  Of course, I wasn’t all that appreciative at the time. . .

I didn’t want to eat.  Food tasted strange.  I felt nauseous.  However, food was important.  I didn’t even know what I liked or wanted.  My family figured out what I liked and what would stay down best.  They talked to the nutritionist to get those things onto my tray.

Walking in the corridor took awhile.  At first I could only walk a couple steps.  Then I could walk to the door.  And then a few steps in the hallway.  Initially, I was surrounded by family and nursing staff.  That allowed me to build my strength and confidence knowing that they were always there to catch me.


Caregiver Tip # 7

Seek out other caregivers. The ANA website has a great forum with an area specific to caregivers.

Whether in person, email, or web research, other caregivers are out there who have lived what you are living.  Connect for camaraderie, information, and support.

For acoustic neuromas, the ANAUSA.ORG website has a great forum that provides patients and their caregivers information and support.  There is a specific area devoted to caregivers.

Caregiver Tip # 6

“Between diagnosis and treatment, help the patient do research.”

It can be scary to read about what might happen.  Terrifying, in fact.  However, you will be better informed when quick decisions come up after surgery. Having my family also do research allowed me to talk about things as I processed them.  Having them educated about issues prior to surgery helped with their ability to understand what was happening with me.

I understood the treatment choices prior to meeting with the doctors at Mayo.

I learned about the existence and need for eye weights. When it was suggested in the hospital, I understood what they were talking about because of research.

I understood why my ear would still ring despite being deaf on that side.

I understood nausea.

Most of all. . . I understood hope.