Bending the Illusion

 

There have many times the past few years when I wished I had nurse's training.  I have all too frequently told Dave, "Maybe you'll marry a nurse in your next life, but you are stuck with a teacher in this one."    

Even as a child, I only wanted to play school, be a teacher.  Other children wanted to play "house", "army", "nurse" but I only liked "school" and "office" which involved a lot record keeping (done with old mail and bills I found in other people's trash to my mother's horror)  I can remember going to my cousin, Sue's house.  She was overjoyed at getting a nurse's kit for Christmas.  So, I had to be a patient while she  nursed me back to health.  The nurse's kit was very cute---all of the tools she needed for proper nursing.  But, it bored and frustrated me not to be able to play school or office. They say look to how children play to see where their interests are.  Clearly, I was happy becoming a teacher and record keeper while Susan became a nurse.

Back in the 70's when professional doors were opening for women that had been closed before, I considered law school and seminary.  But, the bottom line was that I enjoyed teaching.  So, I returned to graduate schools studying "English as Second Language" and "Elementary Reading".  I wasn't sure which one so I began both studies at SEMO and UMSL (despite having a half-finished Master's in English from SIU).  Ultimately my job focused me  on secondary reading (middle school and high school) with an emphasis in "Second Language Learning" at UMSL.

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I liked collecting data, analyzing it and deciding on a strategy to improve results.  I liked analyzing what worked and what didn't work after trying each strategy. Brain research and Sociological research were important in the field of secondary reading with language learning.  I had no idea in the 1980s how much this study would help me in my personal life: in 2001 my husband  had a traumatic brain injury and stroke (in ICU for 6 weeks) affecting his speech, balance and frontal cortex "filters". It was time to put all of my brain research to work and help him adapt to his new and "foreign" environment.

Parker Palmer's On the Brink of Everything discusses the "authentic self".  I've reflected on this.  I believe "teacher" is my authentic self.  I've always known this.  So, to be 70 years old and having to become a nurse goes against my grain. I needed some of those tools in Susan's nurse's kit.   So, how have I managed to find happiness in being a caregiver for my husband? I don't see myself as a nurse but as a teacher.  Here's where I disagree with  Parker Palmer.  He feels it's important to break through illusion to find reality--one's true self.  But, what if the illusion is what feels right and brings us contentment and peace? I believe my contentment comes from "bending the illusion".

My whole attitude about caregiving turned around when I realized being a caregiver is as much being a teacher as it is a nurse. Like a good reading teacher, I identify problems, research solutions and try various strategies to achieve the goals I have.  I keep track of behavior shifts, what works (as well as what doesn't work).  

My current goals are to get Dave to use his hands more (dexterity), sit in the wheelchair more (core strength), make him feel like he's a contributing member of our family (mental/emotional health), interact socially with others (social skills), exercise his brain (cognitive skills), improve his lung capacity, and reduce anger--all while protecting my back, knees and shoulders. One activity that achieves many of these goals is sorting and matching his socks. Another is having him navigate through the apartment in the wheel chair (rather than using a motorized wheel chair or me pushing him).

There are goals for which I need professionals. We saw a pulmonologist who put him on a nebulizer when my "tools" weren't enough. Todd comes several times a week to take him on walks outside.  Emily (a nurse) comes once a week to help him shower. Erin comes several times a week to help him with his physical therapy exercises.  Each one helps with socialization and reducing anger in addition to their obvious jobs.

I believe being a caregiver is as much about being a teacher as being a nurse.  Both careers take care of others hoping the student/patient will improve with care.  Both involve data, research, analysis, trials and testing of theories.  This is where I find peace. If you think being a caregiver is being a nurse, do NOT burst my illusion that I am using my teacher skills.  I'd rather live in my slightly bent illusion than the frustrating, unqualified reality with no nurse's kit around.

Listening

 

Listening has never been my strong suit---whether it was listening to my mother telling me to clean my room or trying to listen to a sermon.  My mother accused me of "tuning her out" or being so into a book, I put a wall around myself:  self imposed deafness was implied.  I finally learned to take notes when listening to a sermon or a class lecture, but socially, listening is a skill that I never could find a "work around" other than asking someone to write me a note, e-mail or text.  I learn more about what is being said by facial expression and gestures than by the spoken word.

My daughters have the same problem so there's possibly a genetic component.  I even took them for hearing tests as children when they failed the listening part of standardized tests.  Their hearing checked out but I made sure they had tape recorders when they went to college (before iphones).

I learn by watching something being done  so I need a visual for full listening comprehension.  I had an English friend when I was in college who called me from New York on his way home to England.  I couldn't understand a word he said because I had no visual clues.  He could have been professing his love, begging me to run away, or telling me the plane had been hijacked, but I couldn't understand him.  When he hung up, I just sat down and cried.  Seeing someone's facial expression and the formation of the words is critical in my understanding.

Now, in my twilight years, I have hearing loss.  Without hearing aids, everything sounds like I'm under water.  I can hear noise but I can't understand any of it---even the visual clues aren't helping.  As much as I love hearing a familiar voice, I'm not comprehending.  Zoom has helped a lot---I can see and hear---and with the focus of zoom on individual faces speaking, it's been a great help.

Recently, MP, our pastor, has encouraged us to take a Sabbath.  Being a caregiver, it's hard for me to take a whole day to be by myself or to take a sabbatical.  So, I've chosen to sit outside or take a walk outside each day.  Our new apartment has a wonderful patio overlooking a wooded park so I often just sit on the patio and watch the birds in the trees and LISTEN to the sounds.  At our house, I had bushes close to windows with bird feeders to enjoy the birds, but here, the birds are too far away.  Some, like the swifts, turkey vultures and hawks are identifiable by their flight patterns or silhouettes.  But, most of the birds. . . . .just birds.  I went a whole month at the apartment before I even saw a cardinal which I could see at our house daily.

I recently discovered my Merlin bird ID app has a "Sound ID".  So, the other day I heard a very cheerful bird, hit the record button and discovered it was a vireo warbler.  As I was taking a walk yesterday after a rainy day, I heard a lot of "joyful noise".  I got my phone out hit the record button and in one minute, recorded Brown Thrasher, Downy Woodpecker, House Sparrow, European Starling, Tufted Titmouse, Northern Mockingbird.

I am now even able to identify the European Starling by its call: sounds like an asthmatic raspy old man. Just now while writing this (in under a minute:) European Starling, House Sparrow, Brown headed Cowbird, American Robin, Carolina Wren and Rose-breasted Grosbeak. I'm not going to say this is as satisfactory as seeing them at my window, but I am developing my listening skill. I think I can identify a cardinal now too. The app highlights the sound it is currently recording and there's a visual pattern at the top of the screen.

One of my English cousins just told me that she uses that app too which certainly explains why Merlin says "American Robin" since the robins in England have a red breast but otherwise are more the size of our Bluebirds. Another friend said she loves the app when visiting somewhere to help her identify birds she's unfamiliar with in a new setting.

Photo by Mark Paton on Unsplash

A Selfish-Caregiver

A friend of mine recently told me she admires my ability to be a “selfish caregiver”  or one who practices “self care”.  She asked for me to write it up thinking it might help others.  My main goal was and always has been for my husband to maintain as much of his independence as possible while remaining safe.  This also gives me a certain amount of freedom.

Dave has been handicapped with a traumatic brain injury for 18 years.  Early on, we decided not to move from our 2 story house thinking we could make it work.  When he first came home from the hospital, we converted the dining room into a “bedroom” with a hospital bed.  Later that year, we converted our first floor half bath into a full bath and added grab bars in that bathroom and our shower upstairs.  We also put handrails in the front, back and garage exits. Giving him independence, gives me freedom.

Between then and now, we purchased a transport chair (always in the back seat of our van) and a large wheel chair which normally is in the back of the van.  Also, I’ve purchased aluminum walkers and roller walkers from thrift stores.  We have one walker on each floor and one in the garage so his hands are always free to go up and down steps.

Until recently, he does the dishes, puts the dishes away,  pays the bills and does most of the driving when we take trips.  He folds laundry and when feeling well, he does the laundry.  With a rolling chair in the kitchen, he can also put his dishes on the island when we are done eating.  A basket in the middle of the table holds medicine, salt, pepper, sugar and napkins.  A pitcher of water is always in front of him to pour himself a drink.

Recently, he was diagnosed with cancer.   After chemo #4, he could barely move. Getting him from the 2nd floor to the first was a bit challenging—he has not been on the 2nd floor since then.  At first he slept in the recliner, but eventually my daughter, son-in-law and I created a bedroom in the old dining room again.  There’s a small shelf that holds his clothes, a floor lamp which he can reach and a kitchen chair which holds a tub of toiletry items:  tooth brush, tooth paste, cup, deodorant, medicine, mouth wash and a bowl. This room had one swinging door to the kitchen but was open to the entry way where we have set up a screen. 

He became so weak that I had to push him in a wheel chair while managing the walker for him to go to the bathroom.  My shoulders and back ached—I was frazzled.  We bought a light-weight motorized wheel chair which has worked out great.  With me assisting him into the chair, he can go to the kitchen, bedroom  or bathroom while I take the walker when it is needed or continue fixing dinner.

To make our first floor more accessible, we have added a new tub chair.  Although we put in a full bath on the first floor, it has a tub which has worked out great over the years with young grandchildren.  But, we needed a tub chair for Dave.  With a little research, I found a tub chair which slid and swiveled.  His skin is so thin from the swelling, I was afraid a traditional chair would cause skin tears.  But with this sliding and swiveling, and having a hand-held shower, he can shower himself with minimum difficulty.

Last year, we put in a Nest doorbell so we could see when someone was at the door and could tell when packages were being delivered.  We now have nurses and therapists coming at all times.  To give me a little more flexibility, If I’ve stepped out to go to the store, I’m teaching Dave how to use the Nest to tell them to come in through the speaker on the Nest. 

Friends have often asked us if they can bring a meal over or help out in some way.  Last week, I took a friend up on the offer and asked him and his wife to bring lunch for all of us to share.  That way, they helped, and we had a chance to catch up with them. I had forgotten, Dave hadn’t socialized much with friends since November.

 I continue to take exercise classes to keep my body strong and healthy.  I know that if I get hurt or sick at this time, we are in trouble.  It’s important for the caregiver to stay strong.  If that means getting out and taking a walk, then I do it.  I carry my phone, don’t go far if he needs me.  On wintery days, I use my Wii Fit to exercise.

In addition to maintaining a strong body, I need a strong mind.  Social media helps me stay connected with friends and family around the world.  Writing helps me sort out my feelings, organize my thoughts and is very therapeutic for me.  Church work has always been important to me and I continue working on the church blog, selling items on Ebay for the church and using social media to stay in touch with church friends.

Blue Apron—eating healthy—has been a priority for several years.  By having 3 dinners a week delivered, I only need to go to the grocery store for breakfast items, snacks and a few dinners. 

When Dave started feeling better, friends came in to sit with him while I went to the doctor or dentist or got a hair cut.   Often the caregivers neglect their own health.  But like they tell us on the airplanes—first put the oxygen on yourself before helping a child or a person needing assistance.  If I don’t maintain my health, then how can I care for my husband?

Although we have had lawn care and a cleaning person for many years, I’ve needed other kinds of help——getting my husband safely in and out of the house for doctor’s appointments and chemo.  Friends and neighbors have stepped in.  Since his chemo lasts 5 hours, I arranged for one person to come over when we left and I’d text another person to meet us when we got home.

Ways people have helped us:

• lending us ramps and equipment
• bringing flowers to cheer us up
• bringing us dessert when we missed small group
• helping me get Dave in and out of the house safely
• following me to the doctor’s office to help me get him out of the  van and into a wheel chair
• sending cards
• prayers
• calling on the phone to chat or to see if we need something
• bringing and sharing lunch
• bringing dinner
• sitting with Dave while I go to appointments
• re-arranging our house to get a bed on the first floor
• picking up a few items for us at the grocery store

Summer Solstice

Soft summer breezes 

Greet me as I find my seat.

The shadows and filtered light flirt.

The orange day lily shines in a spotlight

Before the light shifts and spots a cardinal

Hiding behind a curtain of leaves.

Squirrels leap across the stage 

To the flute-like trills of birds.

A chorus of trees gently swish their skirts in unison

As another squirrel darts in and out  like

A ballerina weaving among the branches.

Closing my eyes I hear a symphony of sounds:

The slow drum rolls of trash cans rattling to the curb,

The bass rumble of a truck in the distance.

Mosquito-playing  violins

Remind me that summer has arrived.

I sit back and enjoy the summer solstice:

A gentle overture

Before the blaring heat of summer.

Try Something New, Make a Mistake

In the words of Neil Gaiman: “I hope that in this year to come, you make mistakes.

http://en.wikipedia.org/wiki/Neil_Gaiman

Because if you are making mistakes, then you are making new things, trying new things, learning, living, pushing yourself, changing yourself, changing your world. You're doing things you've never done before, and more importantly, you're Doing Something.

So that's my wish for you, and all of us, and my wish for myself. Make New Mistakes. Make glorious, amazing mistakes. Make mistakes nobody's ever made before. Don't freeze, don't stop, don't worry that it isn't good enough, or it isn't perfect, whatever it is: art, or love, or work or family or life.

Whatever it is you're scared of doing, Do it.
Make your mistakes, next year and forever.”

While trying to find something about the new year to share on Facebook, I found this quote which pretty much sums up what I, as an almost 70 year old, struggle with.  It is so easy to sit back and let life pass me by.  For example, if I don't go outside for walks, I have lessened my chance for injury.  Anxiety about the future comes too easy when you are older.

Last year's resolution was to "Let it Go" which was a struggle, but I managed to not worry so far into the future, but to tackle one anxiety-filling event at a time. (Click here for other resolutions)  One of my friends at Wellbridge (our health club) said yesterday, "Wow, you sure do stay busy." My response, "Go while the gettin' is good." 

Neil Gaiman hit the source of my anxieties---fear of making a mistake.  But, as I look back on the past year, I see that I have challenged this fear again and again.  

• We cruised out of New Orleans last year, had difficulty getting Dave to the car when an angel in a golf cart came by.
• We came back from the cruise just after an ice storm, but we got to see the back country of Louisiana.
• I went out to lunch several times with sorority sisters I hadn't seen in years.
• I got a Fitbit to help me with my health journey (it measures my activity level)
• We flew to Orlando from Dallas for a disney cruise out of  Port Canaveral (never had cruised from there)
• I crashed a Class Reunion which was not mine.
• I spent Christmas in Dallas---it has been awhile since I celebrated Christmas out of Missouri.
• I started walking every sunny day---with a walking stick to protect my ankles and keep me from falling.

For a list of ideas, someone came up with (one each week), click here.

Ed Catmull, one of Pixar's founders, says failure is necessary to creativity.  Click here for more about that.

Next year, I intend to continue to try new things, plans anxiety-filled events and NOT be afraid of making a mistake.  Because we grow when we learn from our mistakes.  We gain confidence when face our anxieties.  Neil finished his blog for 2014 with

 "It's a New Year and with it comes a fresh opportunity to shape our world. 

So this is my wish, a wish for me as much as it is a wish for you: in the world to come, let us be brave – let us walk into the dark without fear, and step into the unknown with smiles on our faces, even if we're faking them. 

And whatever happens to us, whatever we make, whatever we learn, let us take joy in it. We can find joy in the world if it's joy we're looking for, we can take joy in the act of creation. 

So that is my wish for you, and for me. Bravery and joy."