Guest Post: "Through My Caregiver Eyes" by Elaine Shanks

                   Photo by Elaine Shanks

Blogging is such a therapeutic experience.  I am referring not just about my own experience of writing stories of life in the nursing home, but anyone who has discovered that a blog can be that special place where we share with others our experiences, as a way to reflect and to learn.  

I have met many special people since I began to blog. Elaine Shanks a.k.a Retired Knitter is one of them.  She is a devoted daughter who recently began posting about her journey as a caregiver for her Mom.  After I began reading her heartfelt and beautifully written posts, I invited her to be my guest, and share a couple of her posts that have been compiled  into this one. 

This was Elaine's reply:

“Thank you.  I was a little unsure when I started these postings if there was any value in me sharing my experiences. I know among my friends it seems like almost a tide wave of baby boomers who mirror many of my experiences. The postings were mostly for me and my family, but if they help others, count me in!” 

Through My Caregiver Eyes

In all of life you take steps ... steps towards something or steps away from something.

It is movement. Nothing is static.

Trying to remember when I stepped forward into the role of care giver has been challenging. The changes in life that preceded mom's move into my house were so subtle - sort of like the movement of a glacier that can only be quantified by looking back to where the glacier was years ago.

But I did try to look back.

Others who have been witness to this progression might think they know exactly when it all began, speak with authority on the choices that were made with each step and feel confident to project just how the outcome could have been different. But unless you actually lived through the whole process in my skin and saw it through my eyes, those opinions are theories.

Mom lived an independent life starting 1970 as a widow. She struggled with uncertainty and unknowns in those initial years but she was a stronger person than she ever believed. I am sure she developed the same thoughts and perspectives that I now hold about myself ...

• that I am capable and self-sufficient enough to not need help,

• that am I sound of mind and body and will never falter because I won't let it happen,

• that I refuse to be a burden to others.

She walked every day, enjoyed crafts, read books, she went to swim exercise, she stayed active socially with her friends, she traveled. She remained active and involved with life separate from her daughters. She had no reason to doubt her beliefs of an independent and active future.

But age, genetics, and normal chemical changes in the aging brain can to rob you of all your plans and expectations. It is stolen from you slowly - almost so slowly as to believe that it is not happening at all.

And so it was with mother.

And when did my concerns for her arise?

I often wonder if the seeds of my concern were buried somewhere in my childhood. There is no one memory that stands out, but the scope of many unhappy memories lumped together would be fertile soil for growth of gratitude toward this woman. And from gratitude would come concern at her failing.

The most startling memories of those from my adult years. I remember when she stopped going to her swim exercise. She said it was because someone had stolen a hair scarf from her locker. It seemed like such a small thing, and yet she gave up swimming - something she had done for years. Why I remember that event is a mystery ... except that it might have been the first tiny little red flag for me. Tiny as to be almost quickly forgotten. She was still doing everything else. What was the concern if she changed her one activity? No big deal, right? ... and yet, I remember. For mom it was a tiny step back. For me it was a tiny step of memory - a memory stored away - a concern - step forward ... for me. That probably was in the 1990s.

Another more significant event in the 90s shook her confidence. She was involved in an auto accident. Her car was hit by a motorist who ran a red light. The impact threw her car across the street landing it on the far sidewalk. Although not visibly injured at the scene, it was later discovered that her pelvis was cracked. I believe the realization of how close she had come to serious permanent injury or death changed her a bit.

The day after her accident I remember going to the tow lot where they had taken her car. The car that hit her had plowed into her car just behind her driver seat - missing her by inches - and destroying the back end of the car - the car appeared to have been bent in half and the back half was total destruction. Upon finding her car on the lot, I remember standing quite still, staring in disbelief at the pile of metal that was mother's Honda Civic, tears streaming down my face at the horror of what could have occurred and the terror she must have experienced at impact. Yes, that experience would shake anyone.

She took a step back in confidence that day. I took a protective step forward to compensate. That was 1997.

Mom recuperated from her accident at my house for about a week. She could barely walk and even after returning to her home, she needed lots of help. Food shopping, laundry, rides to the doctor and church ... but over time she recovered, she got a new car and took back bits and pieces of her life.

I really thought we were back to normal.

But then another behavior began to emerge. I discovered that talking took the place of action for mom. Although she was always a cautious person, I didn't remember her delaying actions indefinitely. Talk about taking computer classes and getting a computer went on for a year or more. Talk about her need for hearing aids lasted almost a year. Concerns about her rising rent and a possible move to another place went on for two or three years. Through it all, we talked and talked, and planned and planned, but I couldn't seem to prompt her to action.

Eventually I convinced her to get hearing aids. A hearing test had shown her hearing loss was severe. But it was probably 8 months before she would wear the new hearing aids full time. At least I was content that she could hear sirens when driving her car or people approaching her from behind when she walked on the street.

But I had uncomfortable thought that maybe she had passed some mental invisible line in her functioning. Everything took so long to achieve.

Most worrisome was how frail she was getting. She still went out for walks in her neighborhood, but they were slow and measured with the help of a cane. At times she seemed to be overly trusting of casual acquaintances. As I left her apartment after each visit, I would watch her. She would follow me out to my car, and watch as I left, waving all the time, then walking back to her front door - slowly and carefully.

I couldn't help but worry that as she was getting older and weaker, she was becoming a target for bad things that sometime happen against the elderly.

During a short period of 4 or 5 years, friends were moved away or went into retirement communities, trusted neighbors were leaving, some close friends died. She also seemed to be pulling away from her normal social circles - doing less of everything. She stopped traveling, taking only occasional day trips. And then even the day trips stopped. And decisions about all things, big and little, became more and more difficult for her. Discussions and conversations were only partially remembered. Important things were written down so she could refer to them later. Soon even unimportant things were written as well. Taking action on anything was lacking.

The circle of her life was shrinking noticeably.

Maybe I was over reacting, watching too much crime TV, reading too many newspaper stories about crimes against the elderly ... maybe. But I know my personal radar was picking up changes in mom that required action from those who cared about her.

I struggled then, as I do now, with how to balance her rights to independence (as much as she could manage) against my concerns for her health, safety and quality of life. My yardstick in dealing with mom was to treat her as I wanted to be treated when I was her age. So we continued to talk as I sought to move her through decision making into action. Movement was slow going.

It definitely was the harder road to travel. I always seem to pick the harder road.

And the forward steps by me towards being a full time care giver were occurring without conscious thought or plan. I was just doing the things that needed to be done for a member of my family. 

To do otherwise seemed to be irresponsible.

Elaine Shanks

Retired Knitter

www.mynext20yearsofliving.blogspot.com

Retiredknitter@gmail.com

******

Thank you, Elaine for your precious posting.  I hope everyone continues to follow the rest of the series over at Retired Knitter

Is It The Right Room?

“Excuse me, ma’am,  I am looking for Anne Smith.” 

A nurse assistant heading down the hall at a fast pace, holding a meal tray, turned around to see who was talking to her.  She glanced at a man in his seventies, wearing a blue buttoned-down shirt and black slacks, with shiny leather shoes. The man was a visitor. 

“I believe she is in room 302.”  The nurse assistant pointed out the hall.

“Thank you,” the man politely said, as he headed to the 300 hall.

The man stopped at the door of room 302. He timidly knocked on the door, slightly poking his head into the room. He glanced at a lady resting in a recliner, watching the news on a mid-sized TV mounted over the wall. 

The lady cocked her head and fixed her gazed on the stranger.  She frowned, and remained quiet. 

“I’m sorry, I was looking for my sister, Anne Smith,” the man said, with an apologetic expression. “I guess I was given the wrong room number.”

“A...An... Anne’s room is 304... just next door.” The woman seemed to gasp for air, staring at the intruder. “Excuse me...”  The woman took a deep breath. “Are you Earl?”

“Huh? Yes, I am.” He startled—his mind racing with thoughts of uncertainty as to why the woman in 302 would know his name.

“I’m Claudine Webb.” The woman flashed a big smile. “Don’t you remember me? We met in high school.”

“Claudine!” Earl exclaimed, struggling to manage the surprise. The girl he had a crush on in his senior year of high school was there, in front of him, sixty years after their graduation. Claudine and Earl were good friends, but Earl never confessed his attraction to her. Earl didn’t want to interfere between Claudine and her boyfriend.  

Earl learned later that Claudine married her school sweetheart. He believed he did fine by remaining single. He was too busy to settle.

After retiring from the Air Force, Earl decided to make Jacksonville, Florida, his place of solace.  Additionally, it was a good location for his part-time job as a Consultant. He had been blessed with stable health—even now in his aging years. 

Earl had flown from Florida to Missouri to visit his sister, Anne, after learning she had sustained a fall resulting in an ankle fracture. Anne came to our facility for a short-stay, until completing her rehabilitation. 

“Oh Lord, who had imagined that I would see you again after all these years?” Earl  looked bewildered. His thoughts promptly engaged in a debate, whether to continue talking with Claudine and catching up with her life, or going to look for his sister Anne. While in the midst of his confusion, a cheerful voice interrupted his train of thought.

“Earl!” Anne’s voice echoed throughout the hall. Rushing in her wheelchair, she was anxious to meet her brother, as staff had let her know there was a gentleman looking for her. She was expecting Earl’s visit, so she was not surprised, but rather blissful.  

Anne joined Earl in Claudine’s room. Anne flashed a grin, perplexing Earl. 

“What’s going on?” Earl asked Anne. 

“I guess you found out about Claudine being here before I could give you the surprise.” Anne continued smiling. “Claudine didn’t know about you coming to see me.”

“You little stinker!” Claudine exclaimed, then laughing. 

“Claudine is here for rehabilitation, as well,” Anne said. “She lives alone, as her husband passed away five years ago. She can’t go home until she gets stronger.” 

“Huh!” Earl smiled. “The misfortune turned out to be the opportunity for this pleasant reunion!”

“A lovely reunion, indeed.” Claudine spoke with emotion, her eyes fixed on Earl. 

“I didn’t get the wrong room number after all!”  Earl’s flirtatious words sounded like music to Claudine’s ears. 

“Earl..." she sighed. "It was the right room number.” 

Photo Source

Regrets

Mary was loud and presumptuous. 

She thinks she owns the place!  I thought to myself as I walked by the nurse’s desk where Mary proudly perched daily, surrounded by nurses and physicians. She seemed to love being around other medical professionals, and to talk non-stop about the patients.

Mary was in her mid fifties, working as a Hospice Nurse. Although she was not part of the nursing home staff, she acted as though she belonged to our company. Mary had an air of entitlement to the extent that she would lead and often criticize our staff. 

“I can’t understand why she is so outspoken!” I complained to Doreen, the Assistant Director of Nursing.

“She means no harm,”  Doreen shrugged. “That’s just her personality.” 

One day, as we were holding a resident care meeting, Mary abruptly opened the conference room door, and lacking an apology I deemed appropriate, she inquisitively asked why she wasn’t invited to the meeting, given that she was the Hospice Nurse for that particular patient. I was unsure whether I forgot to notify Hospice of the meeting, or if there was an internal miscommunication at the Hospice agency.

In retrospect, I question myself whether I unconsciously failed to notify Hospice as a way to avoid Mary in the meeting.  In prior meetings where Mary had been invited, she essentially took control of the meeting and the agenda, making everyone else look like her subordinates.  Yet no one would confront Mary about her controlling behaviors. 

As responsible of setting the care plan meetings, I felt forced to apologize to Mary—now I was the one to apologize. My dislike for Mary grew stronger. Her presence gnawed at me. It tormented me having to devise ways to dodge her, her inquisitive eyes and loud tone of voice.

“This has to be a karma!” I told Norah, a family friend who had agreed to meet me for lunch, and to listen to my frustrations.

“I’ve never met Mary but I do know she is married to James Jones, a well-known businessman in this town.”  Norah said with calm voice. 

“Seriously?" I exclaimed. “That explains Mary’s feelings of empowerment.”

I reflected on Mary’s personality and the association with her respected husband. I started to understand and accept the way she was. Although I still kept the distance between us, I tried to minimize my exasperating opinion about Mary—my judgmental thoughts, I realized. 

Months later, on a cloudy morning of Spring, as I entered the nursing home, I noticed several members of the staff gathered around the nurse’s desk, talking with low voices, near whispering, with startled looks on their faces. I frowned, sensing that something unpleasant was brewing. My friend Lillian, the Admissions Coordinator, approached me quickly, delivering mortifying news:

“They found Mary dead this morning.” Lillian’s words sounded sad, and her face reflected a disturbed expression.

“Oh my God!” I covered my mouth, shocked.  

“What happened?” I asked, after taking a breath.

“They don’t know.” Lillian said. “Well, they don’t want to say anything because it appears that she committed suicide.”

That was appalling. Overwhelming emotions embraced me. I felt guilty and ashamed for my lack of compassion for Mary.  The unavoidable question arose on my mind. Why?

Mary’s death became a tragedy, not just for the facility and the Hospice staff, but also throughout the town. It was suspected that Mary ended her life with a prescribed drug overdose.

After her death, I learned about how miserable Mary’s life was. She and her husband were separated. Her husband was having an affair with a younger woman. Mary was devastated. The nursing home was the only place where Mary felt she did something valuable—and where she had some control. Every day, once her workday was over, Mary left the nursing home to face the reality of her failed marriage and the loneliness in a motel where she was temporarily staying. 

The nursing home was Mary’s workplace but also her home—during the day.  Beyond the facility walls, Mary felt near homeless. 

I have thought of Mary throughout these years, mourning her death. I deeply regretted not sharing a cup of coffee or a good laugh with her. I rued my narrow, antagonizing and prejudging thoughts about Mary, and not opening my heart, perhaps allowing me to be another of her many friends. I lamented not praising her for the passion she had for her patients, and the elderly. I wished I had told her how beautiful she was, as Mary always looked so fancily dressed, wearing fashionable jewelry and accessories.

I learned a painful lesson, and I pray that I may see beyond people’s façadas and open my arms to the “Marys” that may cross my path. May I have a cup of coffee ready for them, and help them feel welcomed—make them feel at home.

My book "Home Sweet Nursing Home" has been released!

HOME SWEET NURSING HOME

An A to Z Collection 

of 50-word Stories on Aging and Healthcare

Today’s nursing homes are no longer “rest homes,” but rather vibrant places where residents, families and friends gather, interact, and share heartfelt memories and experiences. Through a 50-word-story collection of vivid tales, Doris Plaster, LCSW, recounts the realities of life in a nursing home from her Social Worker perspective, and that of the caregivers and residents in 26 short vignettes, that are both poignant and thought-provoking.


HOME SWEET NURSING HOME at Amazon.com


**Thank you to all of my blogger friends who encouraged me to publish the A to Z April Blogging Challenge. Here is the result.  I will be forever grateful for your support**

A Mother's Letters

Another summer day. The temperature has been warmer than expected.  Patty listened to the news alluding to the scorching weather. Yet the heat wave wasn’t Patty’s chief worry that morning.  

Patty’s health had not been the best in the last couple of weeks.  She had missed a few days of work.  Missing work made her feel uneasy as she rarely did.  Patty was one of those exemplary employees.  As a retired school teacher, she faithfully followed the principles of discipline and work ethic she taught in her thirty years of instructing middle school students.  Now working in social services in a nursing home, the nature of the job made no difference; her principles remained inviolate. 

Patty had never been a morning person.  But she decided to drag herself out of bed way too early this particular day—for no apparent reason.  She opened her closet door, and glanced inside, trying to decide what to wear. It certainly had to be something casual and comfortable. 

She remembered that a pair of lace-up sandals were at the very top of the closet.  She had only worn them once.  Patty stretched to reach the sandals, and with some difficulty, was able to grab them by the laces which dangled over the edge of the shelf.  As she sat the sandals on the floor, she noticed something had dropped from the top of the closet.  She frowned, focusing on an envelope lying on the floor, near where she had placed the sandals. She picked it up. It was a letter mailed to her in 1968. 

My mother’s letter! 

Patty recognized the envelope as containing one of the many letters her mother sent her during her junior year of college.  She sighed as past memories rushed into her mind.  She vividly recalled her excitement when she was accepted to an out-of-state college.  Knowing that she would be away from her mother brought her as much happiness as she anticipated her college experience would bring. 

Mother was so mean...  

Resentment gnawed inside of her, despite the almost twenty years since her mother’s death. 

Patty looked up into the closet.  She had pulled a card box in which she kept her mother’s letters halfway off the shelf in her quest for the summer sandals.  Patty jumped up and grabbed the box with one hand as she clutched the letter against her chest—  unconsciously placing the letter closer to her heart.  

She turned around and fell onto her bed.  Lying on the bed, she began leafing through the stack of her mother’s letters.  Patty pulled the letter from the envelope she held next to her bosom and read it.  Her heart pounded as she carefully read each line.  Her mother’s words rang different to her now.  

Nothing like how I read my mother’s prose in my younger days.  

The letters now bloomed with words of wisdom and love.  Patty’s eyes welled with tears, blurring her vision for a moment.  She wiped her eyes, and continued reading letter after letter.  More tears streamed down her face. Unexpectedly, Patty felt light-hearted. Peaceful. 

Searching for the meaning in her heartfelt moment, Patty realized she may have discovered something she had missed in her mother’s letters. 

These words express my true mother, her feelings about me.  Patty sighed. 

I was too young and immature to understand my mother’s struggles and burdens. Hurtful feelings blinded me from seeing beyond what I believed to be my mother’s harshness.   

Patty felt the loving spirit of her mother that day as she never had before.  While part of her believed it was just coincidence that one of her mother’s letters happened to drop to the floor that morning, Patty preferred to think that it was a gift from her mother to brighten her day.  

Patty thought of how special her mother was every time she grabbed a pen and paper to send her a loving message.  Beautiful words preserved for forty years now.  

Letters genuinely inked with love.

Photo Source

The Flower Room

“I want to warn you,” Ms. Gibson’s daughter, Kelli said, cocking her eyebrow. “Mom doesn’t want to be here.”

I remained calm, although I wanted to shake my head. I managed to keep my composure. “Sure, I understand,” I said, nodding.

Ms. Gibson had just arrived from the hospital, after having foot surgery due to a fracture. While Ms. Gibson was being accommodated in her room, I led Kelli to my office to gather protocolary admission information and complete pertaining paperwork.

I still wanted to tell Kelli she wasn’t telling me anything I didn’t already know. Most, if not all, of the new residents do not want to be in a nursing home, even if it’s for a short stay. But she quickly continued talking:

“She will be grumpy and will probably try convincing you all to let her go home.” Kelli’s eyes were wide open, and her hand gestures seemed to add assertiveness to her words.  “She lives alone and I can’t be there every day.”

“Kelli, we will monitor your mother’s adjustment to the facility routine, encouraging her to complete her rehabilitation before she returns to her home.”  

I empathized with Kelli. It’s not easy to tell our parents what to do, even if it’s for the best. Parents want to remain in control, and don’t seem to accept well the switch of roles in their aging years. 

I checked on Ms. Gibson a few times that week. She often kept to herself, preferring to stay in her room—except when going to therapy. 

On a Monday morning, I decided to visit with Ms. Gibson. As I walked in her room, I was surprised at the change in the room decor that obviously occurred during the weekend. Multiple plants—mainly flower plants—had been carefully and strategically arranged in the room, beautifully displayed on delicate wooden plant stands.  The place had a unique touch, a welcoming feeling embraced me as I entered. 

Ms. Gibson was sitting in a recliner, looking out the window. I spotted a beautiful view of the court yard under a sunny day.  Ms. Gibson seemed relaxed.

She looked at me, and flashed a timid smile.

“Ms. Gibson, your room looks great.” I brushed my fingers along the plants in front of me. “I like your beautiful plants and flowers.”  I bent down to smell red roses and purple orchids. Their scents and colors were pleasantly intoxicating, simply indulging. 

I never saw a room in a nursing home with as many plants and flowers as Ms. Gibson’s room.  There was no doubt someone had taken daily care of them. 

“Thank you.” A  gentle smile lit up Ms. Gibson’s face, as if the sunshine had suddenly reflected on her cheeks. 

Ms. Gibson began telling me about each one of her plants, and how much she enjoyed gardening. She then referred to her home, a four-bedroom log home located in a rural area, built by her husband. Since his passing more than ten years ago, she had meticulously taken care of her home, and especially of her garden.  It was a place of solace and fulfillment for her. 

I understood why she wouldn’t want to be away from home. And I also understood what the plants and flowers in the room meant to her. This was her temporary home.  

Ms. Gibson eventually became more acquainted with staff. She seemed to adjust well to the routine of therapy and care. My visits with her became more frequent than planned. I enjoyed listening to her life stories. 

I mused sometimes about what home really means. 

Home is where your heart is. 

I have heard that quote many times. Ms. Gibson’s heart was there—for the time being. Rather than me trying to help the resident adjust to her environment, the opposite occurred. Ms. Gibson made me feel comfortable, and welcomed me to her place—her home away from home. 

Ms. Gibson finally recovered, and was ready to return to her house. She was happy, but showed no rush in leaving. She took her time saying her goodbyes to other residents she had made friends with, and with the staff she had bonded with. 

I returned to the the room days later, after Ms. Gibson had left. I felt the void. The room was not the same. I missed the plants and flowers, and the delightful conversations with my resident. 

“Is this room available?” My thoughts were suddenly interrupted by the gentle voice of a petite elderly woman, standing by the door, holding a walker.  

“This is Ms. Floyd and she wanted to tour the facility,” my co-worker Melba explained, standing behind the visitor.

“I came to check out the place,” the elderly woman said. “I will have surgery in a couple days and I want to come here for therapy until I get stable enough to return to my apartment.”

“Yes, ma’am,” I flashed a broad smile. “This room is available, just waiting for you.”

**************

Thanks to Tony Sexton at  Senior Advocacy  for inspiring me to write this story, after reading his insightful post on what "Home" means for nursing home residents.

“I long, as does every human being, to be at home wherever I find myself.” 

-- Maya Angelou.

Photo Source

My Patient, My Hero

Hold my hand, lady!” Ed exclaimed as he extended his hand out toward me. “Hold my hand!”

Ed appeared anxious—and I sensed he seemed worried about me. I was walking by his side as he was wheeling down the nursing home hall. I offered him my hand, and he grasped it eagerly while propelling the wheelchair with his free hand, and his feet. We glided down the hall.

“Let’s go to the highway,” Ed commanded. 

His words were clear. Unusually coherent. Ed normally spoke incoherently and non-sensical. His medical records revealed his diagnoses of Dementia and Post Traumatic Stress Disorder.

Ed continued moving forward, holding my hand. 

I realized that Ed was experiencing a flashback of his service in the Vietnam War. Ed had been a prisoner of war, and was kept in captivity for several months. For Ed, the Vietnam War was not just a bad memory, it had become a living nightmare, a dreadful time that Ed relived in his mind over and over, a tormenting past that continued into his present—as if he was the captive of an evil time machine.

I felt Ed’s warm and firm hand. My gaze fixed upon him, trying to place meaning to his vivid gestures and expressions. 

My heart pounded as I started to see beyond the patient with Dementia and PTSD. I started to see the courageous man Ed had been, and continued to be, facing obstacles and dangers. 

I saw a gentleman—Ed didn’t call me “you” or “woman,” he called me “lady” even though I may have been a stranger to him. I saw a compassionate man, trying to “save me” by taking me to a safe place—the highway. 

And most importantly, I saw Ed as a proud American soldier, serving our country with dignity and grit. 

Photo source

Today, as we celebrate the Fourth of July, our glorious Independence

Day, fond memories of Ed flood my mind. Ed was the first nursing home

resident who first inspired me to write stories of the Home Sweet

Nursing Home. After sharing those amazing minutes in Ed’s world, I

realized I should share with others these heartfelt experiences. 

Ed, a dignified veteran of the Vietnam War, was my hero that day, and has been since then.

This blog is a tribute to Ed, for he extended his hand to me, and lifted

my soul.