Caregiving Blog: The Upside of Caring for Aging Parents
While experiencing the effects of caregiving, it can be difficult to see the upside of caring for aging parents. Becoming a caregiver happens because of love and a sense of responsibility. The effects of caregiving can feel like an up and down rollercoaster ride. There are times when trying to find the upside of caring for aging parents is a challenge.
I was the youngest of six children who helped my parents before their deaths more than 20 years ago. At the time my mother needed help, I was working full time, going to college at night, and trying to balance my life. There were day-in and day-out struggles with my mother’s health—days when she would stay in bed most of the day.
Worry existed about not being available while I was working and going to classes. My father also worked full time. Every time the phone rang, there were concerns about a health issue or the need to go to the hospital. This worry is one of the effects of being a caregiver.
Everyone in my family struggled with not knowing what to do to make the situation better. The doctors did their job to treat conditions. It seemed like there should have been more that could have been done to improve my mother’s quality of life that appeared to me to be miserable. We wondered about the upside of caring for aging parents and what we learned in an effort to remain positive.
Worry About Something Always Going Wrong
As time passsed, I felt powerless watch mother becoming physically weaker and weaker. She looked and moved around like she was 20 years past her age. My mother’s life was slipping away, and all I could do was stand by and watch. Caring for aging parents was a concern.
One chronic disease was added after another. Heart disease, osteoporosis, mini-strokes were the conditions that resulted in multiple hospitalizations. At the age of 60, mom had quadruple bypass surgery. That surgery resulted in hepatitis C from a blood transfusion and significant pain walking because of the vein taken from her right leg for her heart.
At this point, I was searching for the upside of caring for aging parents. Searching for any hope, anything that might improve my mother’s care situation.
There was the weak artery in her neck that could burst anytime and result in death. She was placed on blood thinners and other medications to manage these complications. Her life was a ticking time bomb—never knowing when the end might be—and constantly worrying about the next phone call.
Three months before her 69th birthday, she was diagnosed with bladder cancer, the result of a lifetime of cigarette smoking. Surgery was completed, but by then her body was so weak it was unable to fight off infection. She died of sepsis weeks after her birthday.
My father was despondent. Brothers and sisters were all grieving in their own ways. The effects of being a caregiver seemed to be feelings of overwhelm, stress, anger, and grief. Blame was placed on the doctors.
There was guilt that we should have been able to do more. Guilt about not asking the right questions. Anger that the healthcare system didn’t give us the tools we needed to be more proactive. The year was 1995 long before anyone talked about the struggles of being a family caregiver.
The Aha Moment
After my mother’s death, the realization struck me that family members have no idea how to navigate care situations. Not knowing what to do has serious negative consequences for the health and well-being of aging parents. The healthcare system treats diseases and performs surgeries. The system doesn’t help families be proactive to manage care for loved ones.
The effects of being a caregiver were many, not all positive. Even with three college-educated children, one a nurse, we still did not have the knowledge, the skills, or the know-how to manage health issues. We did our best, but it wasn’t enough. I learned that it takes more than love to succeed in helping loved ones.
We thought we knew what we were doing. We were naïve in thinking that we were capable adults caring for my mother. We didn’t know the questions to ask, and even more, we didn’t see ourselves as caregivers with a greater responsibility to advocate for the care of my parents. I believe these things even more strongly today.
What To Do When I Grow Up?
After a few more years of helping take care of my father—who tried to commit suicide as the result of mother’s death–I discovered my passion in life. I discovered the upside of caring for aging parents.
I was the executor of my parent’s estate; the organized one in the family. So organized that the estate attorney asked why I didn’t “do this” professionally. I had no idea, until years later, that being the personal representative of an estate was a career choice.
While cleaning out my childhood bedroom, I realized that my mother didn’t change many things. My grade school and high school books were still in the bookcase. You may see a similar situation when you return to your childhood home. The room may be as you left it.
Follow Your Passion
One book, in particular, had a yellow piece of paper sticking out the top. I often wonder if my mother left this piece of paper for me to find when she was gone.
On the lined yellow notebook paper, it read, “things I want to do when I grow up.” The answers? Fly jets in the airforce, be a forest ranger, join the Peace Corps, and the last and the most important to do—help old people. Motion sickness, not wanting to be alone in the woods, and fear of leaving the country eliminated the first three options.
These “things I want to do when I grow up” were the result of career counseling in high school. I received a scholarship to the University of Nebraska at Omaha. The Goodrich scholarship program for social work fell right in line with the list and the idea of helping old people. I badly wanted there to be an upside of caring for aging parents and the elderly.
How many of us identify a passion when young and then become sidetracked. The career that we have today looks nothing like the career that we imagined?
The Detours of Life
I declined the social work scholarship out of concern of being able to work and support myself. My parents earned enough to survive. There was no extra money to pay for additional college expenses, a car, gas, and other expenses that would have been necessary for me to get back and forth to school.
Instead, I took a full-time job and went to technical school at night to learn secretarial skills. My first job was at the Federal Reserve Bank. We processed savings bonds, sold government securities, and burned money. I stayed long enough to graduate to a secretarial position at a local television station in the sales department.
I continued going to night school and was successful in gaining progressively better positions working my way into a marketing position at ConAgra. The experience gained at ConAgra and in other corporate positions was exactly what I needed to learn to continue my caregiving journey.
More Caregiving Struggles
During the time I worked at ConAgra was when the caregiving journey for my parents advanced. Before this, the help provided was simple errands. After this, the health concerns worsened, and the effects and responsibilities of being a caregiver grew.
Fast forward to my father’s funeral. My family gathered in Omaha. My oldest brother became deathly ill. We were all very familiar with the emergency room because of my mother. He was diagnosed with leukemia and put on a life flight plane back to California for treatment. He died short of a year later.
The deaths of my father and brother were endings that turned into new beginnings. I was determined to learn what it took to care for family members. To avoid the up and down rollercoaster of health issues, hospitalizations, and worry about the situation getting worse. Helping old people became my passion and my mission to master over the next 20 years.
Will You Visit Me?
I began volunteering with the elderly while living in Venice Beach, California. I was convinced that I could find the upside of caring for aging parents and loved ones. I repeated completed career testing that indicated a strong desire to help others.
I took the plunge and gave up my corporate job to start my first company, In-Home and Family Services in 1999, to help the elderly. Working with caregiving families, it was easy to see the effects of being a caregiver. Caregivers were stressed, exhausted, and burned out. Aging parents did not want to be a burden to their families. Everyone wanted to avoid having aging parents going to a nursing home.
From 1999 to 2007, I employed staff who loved the elderly and wanted to help. We provided the services of in-home care to help the elderly stay at home and out of nursing homes as long as possible. My caregiving staff visited clients in their home and helped with housekeeping, meal preparation, medication reminding, laundry, shopping, and providing transportation to medical appointments.
A Passion for Learning
Because of a passion for learning, I continued my education so that I could expand the services offered. I completed a Gerontology Program at the University of Denver. Certfications were completed for Certified Senior Advisor and after that, a Certified Guardian. I completed Medicaid applications and managed the care of clients who trusted me and did not want to go elsewhere to find assistance.
My passion for helping the elderly transitioned into company number two in 2017. The Care Navigator focuses on care management. The additional services of court-appointed guardian, medical and financial power of attorney, the personal representative of the estate and trustee were added. I quickly found the upside of caring for aging parents.
The Care Navigator and all of the services we provided was rewarding. My staff and I managed care for clients so that families would not experience the issues that my family experienced— thinking we knew how to care for my parents—when we had no idea what we were doing.
The effects of being a caregiver on these families were evident. Our goal was to solve the problems and make caregiving responsibilities more manageable so that families could focus on relationships instead of problems and tasks.
The Caring Generation® Radio Program for Caregivers and Aging Adults
Opportunities to increase services through The Care Navigator continued as the world became more aware of caregiving being a life role. Caregivers began seeking help and solutions. In April of 2009, I was contacted by a local radio station to host a radio program for caregivers and aging adults that I called The Caring Generation®. The station identified an audience of people who were caring for loved ones who had no idea what to do.
I was on the air by Mother’s Day of 2009. The secretarial job years ago at the local television station in Omaha exposed me to the world of media and media production. Using this prior experience gave me the confidence that I would quickly succeed at being a radio host. Even after researching, there was little information about how to create and host a radio program.
Working through how to host a radio program happened quickly through practice. Suport was gained from a colleague who helped identify weekly guests for the program. The Caring Generation radio program for caregivers and aging adults filled a gap for caregivers and aging adults seeking solutions. I created and hosted the program from 2009 to 2011.
The program ended so that I could finish a book that I had been writing off and on for ten years. My radio listeners kept asking for a book, and I committed to finishing the project.
Legal Responsibility Opened My Eyes to a Fragmented Care System
While working on my book, I continued the work of The Care Navigator. By having legal responsibility for clients, I realized that the healthcare system was fragmented. There were so many places where care and treatment could and did go wrong. Lack of communication and coordination resulted in significant problems.
I became an advocate for my clients. I trained providers on how I wanted them to care for my clients. I testified at contested court cases where family members disagreed about the care of loved ones.
The legal responsibility of being a medical power of attorney, a financial power of attorney, and a guardian was explained to the medical community. A knowledge gap exists with healthcare providers who do not understand the level of responsibility of a guardian or a medical power of attorney. Doctors make decisions without asking permission. Family members who are power of attorney don’t know how to advocate with the healthcare system.
Gaps Exist in the Care of Elderly Adults
More gaps in the healthcare system were discovered. The system fails to treat elderly adults with dignity. Family members came to me for help solving situations that turned into major disasters. Treatment for elderly adults is refused without strong advocacy and healthcare knowledge.
There was a lack of taking responsibility to manage the care situation. Providers who were not helpful, who provided inaccurate information, or who made mistakes that resulted in harm to elderly parents and family members. The effects of being a caregiver for my clients continued to make me believe that there still had to be a better way to reach and help more caregivers. I was convinced that there was a better way to help family caregivers avoid caregiving catastrophes.
Family members told me that they waited too long to get help or they didn’t know where to find help until they eventually found me. This was the push I needed to re-write the book for the 11th time and to let caregivers know about the upside of caring for aging parents.
A Foreign Language
The publishing world spoke a foreign language. I understood healthcare. I knew caregiving like the back of my hand. Working with the publishing industry was unfamiliar and challenging. After two years of finding a publisher, and an editor who edited me out of my book, I had to start over again.
For about four months, I wrote daily hate letters to the editor for destroying the meaning and the intention of my book. I felt as frustrated and angry as family caregivers who try to work with healthcare providers who are not helpful. After wallowing, I brushed myself off and rewrote the booth a 12th time.
After having come this far, I was not going to give up. I was determined to help caregivers succeed in challenges involved with being a caregiver.
There were more issues with the book. Type size, the title of the book (that was given to me by my clients and caregivers). The book-length, and a number of other issues related to publishing a book. The finished product, The Caregiving Trap: Solutions for Life’s Unexpected changes was finally published and is available on my website, through Amazon, and other booksellers. I survived another challenge.
I Wish I Knew About You . . .
In my daily work at The Care Navigator, I was contacted by many individuals who said, “I wish I knew about you years ago,” or “so and so told me to call you.” I still receive these calls today. The effects of being a caregiver are all-consuming and overwhelming.
Between 2007 to July 2018, I helped clients remain at home until death and managed 24/7 in-home care situations. Daily lives were improved by managing all aspects of life, including the most minute details of daily care and household management. Caregivers and their families were able to stop worrying about the next thing that might go wrong. They knew they could rely on me to solve whatever problems arose.
This experience led me to empathize with family members and caregivers who don’t know that practical step-by-step help exists. I was in the same situation with my aging parents more than 20 years ago when no one talked about caregiving. The effects of being a caregiver, the stress, and the burnout can result in exhaustion. With my support caregiver gain confidence, learn new skills, reduc worry, and make better care decisions for aging parents.
With expert assistance, the struggles and worry of being a caregiver become manageable. Caregivers are able to see the upside of caring for aging parents. The care and support provided to elderly loved ones improves. Unexpected situations reduce in frequency because daily care is better managed.
The Next Move
So what did I do? I decided to start all over again for the third time. In July of 2018, I transitioned the clients of The Care Navigator to another business in Denver, Colorado. I had one more mission—one more passion—and one more mountain to climb.
My mountain is to reach 1 million caregivers throughout the United States to provide online support and education. To let caregivers know that hope, help, and support exist. To let caregivers know that the effects of being a caregiver need not take over their lives and their emotions.
Caregivers worry about the health conditions of loved ones, what might happen next. Worry exists about making mistakes. Depression and feelings of anxiety are common. Embarrassment exists in asking for help. There are so many concerns that make it difficult to see the upside of caring for aging parents.
In April of 2019, I was approached to reinstate The Caring Generation Radio program. I am excited to say that the program is back, is live, and is better than ever. It’s amazing how life gives us lessons and challenges that prepare us for the next lesson, the next challenge.
In the end, this means that I help caregiving families manage care to avoid harmful care situations. I support positive family relationships at a time when the clock of life is ticking. I work with caregivers wherever they are. Caregivers communicate with me online, through online programs, and online webinars. They don’t even have to leave home.
Make Special Caregiving Moments
Our aging parents and spouses have limited time. Instead of watching loved ones live miserable lives and feeling powerless like I did with my mother, I help caregivers make the best of the time remaining with aging loved ones. I am blessed. My goal is to reach 1 million caregivers. Some think this is a large number. It’s not considering that there are more than 40 million caregivers in the United States.
Caregiving is a significant life transition. Not talking about it won’t make it go away. Let’s make caregiving something to talk about instead of a subject to avoid or dread. Joy and reward results from being a caregiver. Caregiving can be less emotionally draining. Caregivers can provide better care for elderly loved ones when they become aware of the aspects of caregiving that they can’t imagine.
Please help me reach my goal of 1 million caregivers throughout the United States. You can help. Share my website, The Caring Generation radio program, and all of my support programs. I can’t do it without you. God bless!
Looking for more help about the effects of being a caregiver? You’ll find what you are looking for in Caring for Me.
©2019 Pamela D. Wilson, All Rights Reserved
Pamela D. Wilson, MS, BS/BA, CG, CSA is a national caregiving expert, advocate, and speaker who solves caregiving problems. Since 1999, she has been a direct service provider as a court-appointed guardian, power of attorney, and care manager. In response to the need for accessible, accurate, reliable, and trustworthy information, today, Pamela’s focus is to offer online caregiving support, programs, and courses for caregivers and aging adults. Her mission to reach caregivers worldwide is accomplished through social media channels of Facebook, YouTube, and Linked In, Caregiving TV on Roku, and The Caring Generation® radio on Internet radio. She also collaborates with professionals in the areas of estate planning, elder law, and probate, financial planning, and healthcare to raise awareness of and sensitivity to family caregiving and healthcare issues.