Common caregiving issues include:
A sense of duty and obligation to provide care that damages family relationships
Emotional and financial challenges resulting in denial of care needs
Ignorance of predictive events that result in situations of crises or harm
Delayed decision making and lack of planning resulting in limited choices
Minimum standards of care supporting the need for advocacy
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|Publisher:||Morgan James Publishing|
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Discovery of Life in a Cardboard Box
Exercise: Connecting and Reconnecting
Tales of The Caring Generation: The Baby
The brown cardboard box sat atop the bed in the vacant room. Sunshine streamed from the window directly above the bed onto a few thirsty plants perched on the narrow windowsill. Inside the box was an oval plastic coin purse I imagined was purchased years earlier at what my parents affectionately called a dime store. Dark green in color and made of soft plastic, the coin purse had a slit down the middle that opened like a mouth when thumb and index finger squeezed both ends. Inside the coin purse I discovered a silver dollar — imprinted with AA — a date and embellished with colored jewels glued in a circle representing the number of years sober. I later learned that being given this coin is a tradition of twelve-step groups.
In the box were the front pages of greeting cards with pictures of flowers, wheat fields, and open prairies; the other half that would have contained a greeting or signature was cut off in a jagged path by sharp scissors. Hidden inside the bottom of the box, were a wrinkled handkerchief embroidered with the initials SH and a pink crystal rosary. Absent from the box was a ring of purely sentimental value that was on her hand the last time I saw her, but not with her at the time the funeral home staff arrived to pick up her body. The missing ring was never found. An employee of the nursing home likely slipped the ring off her finger just prior to or after her death. These few belongings were all that remained of Sarah's life, and I was the only interested party available to collect them.
Sarah's death struck me as significant and melancholy. Sarah lived to the age of eighty-seven. There was no one except me to mourn her passing or to shed a tear, no one except me to know or care where Sarah was buried or to visit her burial place to acknowledge the life she had lived. Cemeteries are filled with stones bearing the names of people who no one visits. My clients tell me that their greatest fear is not dying but the fear of dying alone. It disturbed me that Sarah's presence on earth was memorialized by material belongings in a solitary cardboard box that now belonged to me. I wanted to believe that life — that all of our lives — offer some legacy to a world that we may no longer inhabit.
Holding the cardboard box of belongings gave me a better understanding of the isolation that many individuals experience in the latter years of life. While many of us take for granted frequent emails or phone calls from friends or the ease of going shopping or joining groups of friends, for many older adults advancing age and poor health prohibit participation in these activities. "People with stronger social relationships have a fifty percent increased likelihood of survival than those with weaker social relationships." Having friends and participating in social activities has a positive impact on quality of life.
Older adults become isolated due to loss of friends or family, limited physical mobility, and reduced income that restricts participation in activities like going out for dinner with a friend or joining an interest group. Social isolation and loneliness negatively impact quality of life in many ways that include poorer health, increased medical expenses, and moving to a community of care much earlier than expected.
Today, families are spread across great distances. When older family members age and become isolated, family is many times unaware or uninvolved of daily struggles or health challenges. I know this to be personally true. This past holiday season I learned of the passing of an uncle who lived at a distance. Because contact with my uncle and aunt consisted of written cards and visits every several years I had no idea my uncle's health had declined and would have not known of his passing if his niece had failed to respond to my holiday card. As a result of receiving a note in the mail, I had a wonderful telephone conversation sharing memories of my uncle with his niece, who knew of me but whom I had never met in person.
Sometimes it takes great loss before we are fully able to understand the value of human connection. Life passes with time and we age. Remaining connected to family is important even if contact is by email or phone. If you doubt the human desire for connection, look at the popularity of Facebook and social media and the way these allow connection to those in our present and in our past. We seek to connect even if the connection is through the convenience of a computer and the Internet.
Even though many older adults are embracing the use of technology, older adults lag in use of technology behind younger Americans. Fifty nine percent of older adults, age sixty five or older, go online, 47 percent have a high speed broadband connection and 77 percent of older adults have a cellphone. In contrast, many older adults are largely unattached from online and mobile life — 41 percent do not use the Internet at all, 53 percent do not have broadband access at home and 23 percent do not use cellphones. Those not using the Internet cite health or physical issues, a perceived lack of benefit from use of the Internet, and perceived difficulty in learning to use technology.
These statistics lend support to one way in which Sarah's life became disconnected. She was connected while she was physically active and dedicated to a career. After retirement she slowly became isolated and then lost the ability to communicate and to connect with others in a socially acceptable manner because of a diagnosis of Alzheimer's disease. The result was a life of isolation and health declines during the final years of her life.
For many, like Sarah, life will become unexpectedly derailed by loss, a diagnosis of poor health, or other unexpected events. For many, the life hoped for in retirement will be very different from life changed by unexpected circumstances. Older adults, regardless of physical diagnosis, who are able to embrace technology and learn to use the technology, specifically the Internet, have the ability to remain socially connected to family and friends.
Leaving with the box that represented Sarah's life, I recalled the first time we met. I walked down the long hallway of a familiar building that I had visited many times for other purposes. This particular building was the type of place older adults picture in their minds with visions of fear and disgust, the type of place that older adults hope to avoid calling their home. My footsteps echoed as I walked across the linoleum floors of the nursing home.
In this particular building, familiar scents of urine and bodily waste filled the air. Residents propelled themselves down hallways in wheelchairs, holding out their hand to greet me as if I was someone who knew them. I greeted each one with a cheerful smile and a comforting hello, hoping a kind soul would return the favor if I ever found myself in a similar situation. Soft voices cried, "Help me," similar to the pleas of a fairy tale princess imprisoned in a castle, pleading for rescue.
The hallways were dimly lit. Employees moved about slowly and deliberately. As is common in many nursing homes, rows of residents in wheelchairs were parked in front of the nursing station so they could easily be monitored. Most of these residents sat, bodies leaning forward uncomfortably with nodding heads, asleep in their wheelchairs, likely dreaming of the comfort and familiarity of a prior existence.
I made my way to the "locked" unit, a place where residents, many with memory loss and those considered wanderers or safety risks, made their permanent home. I sought out the nurses' station and explained the reason for my visit: I was the proposed guardian for Sarah.
The nurse and I spoke briefly about Sarah's background and about how she had come to live at Plum River Care Center four months earlier. Sarah previously lived in a week-to-week motel in an unsafe area of town. Her own home became uninhabitable due to hoarding and unpaid utilities; her yard was filled with junk automobiles and scrap metal. Sarah missed several rent payments at the motel, resulting in the property owner calling the police to evict Sarah or to encourage her to bring her rent payments current.
A resident of the motel, Betty, befriended Sarah. Betty told the police that Sarah did have money to pay — Betty reported Sarah to possess nearly half a million dollars. How is it that someone with resources of nearly half a million dollars became isolated, at risk, and lived in a dilapidated motel?
Further investigation by the police and county social service workers confirmed that Sarah had become a loner. Sarah was seen each day walking the neighborhood streets, wearing soiled clothing, muttering to herself. She appeared harmless and said hello if approached but rarely uttered more than a single word in response to questions.
Neighbors attributed her odd behavior to senility and left her alone. Her home, hidden behind a tall thicket, had grown unattended for years with rubbish collecting in her yard. Neighborhood children called her "crazy Sarah" and told tall tales that her home was haunted. Sarah's life was a train in slow motion moving toward eventual derailment.
Sarah told Betty she became fearful of strangers and began isolating herself after being threatened by a homeless man as she walked home from the bus stop. Shortly after this incident, Sarah reported that she returned to drinking alcohol.
Betty reported to police and county social workers that Sarah had a large envelope of cash that eventually ran low resulting in the situation of unpaid rent. Sarah could not recall the location of Sarah's bank. No mail was discovered at her home and no mail was forwarded to the motel. Sarah was a person living under the radar of general society failing to call attention to her needs and barely existing with the help of a single honest individual.
Sarah was removed from the motel by county Adult Protective Service workers and placed at Plum River Care Center. After months of investigation, her family was located but declined to become personally involved or responsible for Sarah. In fact, her family wanted nothing to do with Sarah. She had two sons and extended family who harbored years of hatred for acts Sarah had allegedly committed many years prior.
Sarah's medical chart included a diagnosis of Alzheimer's disease, unspecified mental illness, and other chronic disease. I realized that Sarah's decline had begun many years earlier. With no consistent or regular personal contact, there was no one to notice or to suggest beneficial medical care. As do most individuals with a diagnosis of memory loss, Sarah lacked the mental insight to realize her memory and her health were failing. Neighbors watched her decline but had no idea how to help or if there was family to contact.
The nurse directed me to Sarah, who sat in a lounge chair near other residents. So as not to startle, I walked over and knelt down to be at Sarah's eye level. Before I could say a word, her blue eyes flashed, she waved both arms high in the air, and her sharp, high-pitched voice screamed, "Leave me alone! I don't want to be bothered!" Not wanting to make a scene, I quickly stood up, turned around, and walked back to the nurses' station like a child being sent to stand in the corner as the result of bad behavior.
The nurse looked at me, smiled, and whispered as if to console me, "Don't feel bad; she doesn't get along with anyone." Notes in Sarah's chart reported frequent verbal and physical altercations with other residents. If another resident was served a meal prior to Sarah, she attempted to grab their plate. If a resident using a walker attempted to pass Sarah, she struck out to reach for the walker or attempted to hit the resident. There were other documented incidents of Sarah tripping other residents by pulling on their dangling oxygen cords as they passed by in the hallway.
I suspected Sarah had a life of ongoing and unexpected circumstances that took her off course. I was curious and wanted to know more. I looked at Sarah and took a seat nearby to watch for clues about her behavior that might shed light on her personality earlier in life.
I watched as the fingers on her right hand shifted from one crystal pink bead to the next on the rosary she clutched tightly. I watched the resident to her left wrapped snugly in a hand-crocheted afghan as she slept peacefully in her recliner. The resident to Sarah's right listened to music through headphones a CD player perched in his lap. His head bobbed to the left and the right with the beat of the music. Suddenly a loud thud broke the silence. Another resident had accidentally knocked a pile of books off a table to the floor. A resident working on a jigsaw puzzle shouted profanities in disappointment as pieces of the puzzle tumbled and bounced across the floor.
The commotion startled the sleeping woman to Sarah's left who began to cry inconsolably. Sarah turned to the woman, smiled with her blue eyes twinkling, and took the woman's hand in hers to caress in an attempt to comfort and stop tears streaming down the woman's cheeks. In that moment of madness, books crashing to the floor, jigsaw puzzle pieces tumbling across the floor, and sweet dreams broken by noise, I witnessed a softening in Sarah's face along with an expression of compassion and kindness. I stood slowly from my chair so as not to cause further disruption. I called my colleague to accept Sarah's case as I walked out of the building.
After being appointed Sarah's guardian, I held a meeting with the staff at Plum River to learn more about her background and care needs. I discovered that the steroids Sarah was prescribed to treat frequent pneumonia had an adverse effect on her behavior, making her aggressive, agitated, and threatening toward others. Once the steroids were discontinued, Sarah became less agitated and more relaxed. There were no more altercations with other residents. She willingly accepted my visits and began telling me stories about her life.
My second goal was to find a care center more compatible with Sarah's prior life history. I found Green Meadows, a care center in a quiet suburb with an available room. Sarah was assigned the bed next to a window overlooking a small park where bird and squirrel feeders had been placed to entertain the residents.
At the time in life when a nursing home becomes a permanent home, the little pleasures like a bed next to a window with a view are a highly requested luxury. At a time of life when comfort, compassion, and preservation of dignity are deserved, many residents of nursing homes are assigned a shared room eliminating any sense of privacy.
For individuals who are still able in mind and body, life passes slowly in a nursing home setting. Residents become completely dependent on their own self-will and determination to remain connected through participation in activities and to maintain contact with friends from the outside world. While family and friends visit when loved ones first move, visits become fewer and far in between because many dislike visiting nursing homes. Some residents living in nursing homes never receive visits from anyone except staff members. For those who are forgetful or confused, the absence of human connection and contact leaves them in a world where bodies and minds fade away, little by little, toward eventual death.
As I grew to know more about Sarah's life, I discovered she was an executive assistant for an attorney who litigated high-profile cases. She told the story of marrying young and described physical and emotional abuse from an alcoholic husband. Her father was also an alcoholic. When her two sons were eight and twelve, she packed a suitcase and disappeared into the night, never to return. As was common years ago, her husband denied any part in her leaving by telling their two young sons that their mother took off into the night with another man. This false tale led to hatred that her sons and family were unable to emotionally resolve.
As much as Sarah reported that she attempted to mend relationships, her sons refused all contact. When I called to tell her sons of her impending death, their response was unchanged: they wanted nothing to do with their mother. Their only memories were of a selfish woman who left with another man, and never returned, presenting an inaccurate story that eliminated the possibility of any type of relationship with their mother.
As her Alzheimer's progressed, Sarah believed she lived in the small town where she was born. The park outside her window represented fields in walking distance of the back porch of her home. Her sons attended school and came home at the end of each day to study and to help around the farm. There was no mention of her husband, only her parents and pleasant stories of her mother. There were stories of Sarah's daily responsibility of milking cows and gathering eggs which she recalled as hard work — not with fond memories. Her father worked long hours in the fields and occasionally at the local rail yard. Sarah recalled he was never without a bottle of whiskey or a cruel word.(Continues…)
Excerpted from "The Caregiving Trap"
Copyright © 2016 Pamela D. Wilson.
Excerpted by permission of Morgan James Publishing.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of ContentsPART ONE: FOUNDATIONS
Chapter 1: Discovery of Life in a Cardboard Box
Chapter 2: Removing the Rose-Colored Glasses
Chapter 3: Sticker ShockWho Really Pays?
Chapter 4: The Oreo CookieStuck In the Middle
PART TWO: THE FAST MOVING TRAIN
Chapter 5: The Starry-Eyed Caregiver
Chapter 6: Family Ties
Chapter 7: The Next Chapter
Chapter 8: Self Preservation
PART THREE: DANGER AHEADTHE UNEXPECTED
Chapter 9: Managing the Unpredictable and the Unexpected
Chapter 10: The Tip of the Iceberg
Chapter 11: The Pleasantly Forgetful
PART FOUR: CLOSURE
Chapter 12: Dying Changes Everything