Caregiving Blog: What Is the Role of a Caregiver

What is the role of a caregiver? In simple terms, a caregiver is a family member or a paid caregiver who helps a sick, elderly, or disabled person. Another word for a caregiver is a helper. Family members who help aging parents may not be familiar with the term caregiver. Persons helping aging parents may not understand what is the role of a caregiver.

Are You a Helper or a Caregiver?

Different types of helpers can be involved in the life of a person who needs care. Helpers can be friends, neighbors, a hairdresser, an accountant who does the annual income taxes, and others. In my caregiving career, I have witnessed the involvement of many good Samaritans. I’ve also witnessed the involvement of helpful people with the intent to take advantage of the elderly.  

What is the role of a caregiver? Do helpers consider themselves caregivers? If not, why? This is a complicated question. Many family members who help do not consider themselves caregivers.

My family fell into this pattern over 20 years ago when caregiving was even less talked about than it is today. Twenty years ago, there were very few resources and little support for caregivers. I’m not even sure that the word caregiver was used 20 years ago.

Family Members May Not See Themselves as Caregivers

Even though my father, brothers, and sisters helped my mother, who was ill for the better part of her life, I don’t recall ever hearing the word “caregiver” mentioned in conversation. My brothers, sisters, and I performed tasks that today are considered caregiving tasks.

I helped my parents with errands, shopping, completing their annual income tax returns. When my mother needed to go to the hospital emergency room in the evenings and on the weekends, I was her driver. There were many evenings where I stayed late into the night and went to work the next morning. Today I wonder about the amount of discomfort she must have been in waiting for me to get off work to take her to the hospital.

These hospital visits and the associated phone calls became emotionally traumatic. I became like Pavlov’s dogs. When my phone rang in the evenings or on the weekend, I knew there was a high probability that it was my mother. The question was usually, “I need to go to the hospital, can you come and take me?”

Fortunately, I lived close and arrived within a matter of 15-20 minutes. The subsequent stay in the emergency room was usually hours until she was admitted or treated and returned home. These repeat events happened when I was in my early twenties. Thank heavens I was young and needed very little sleep. I had no idea I was my mother’s caregiver.

Understanding What Is The Role of A Caregiver

More than twenty years ago, I didn’t know what a caregiver was. I was unable to answer the question, “what is the role of a caregiver?” If you don’t know you are a caregiver, how can you possibly know what you are supposed to do?

This was the issue in my family. We were all helping in our ways. This experience of being a caregiver and not understanding the role of a caregiver led me to be a caregiving advocate. After the deaths of my sister, both parents, and a brother, I wanted to make a difference.

The realization that my family had no idea what we were doing even though one of my sisters was a nurse was shocking. Medical knowledge, or at least knowing what questions to ask is helpful. Evaluating information to make the right care decisions is important. Making the wrong decision can have far-reaching and negative consequences for a loved one. Not asking the right question can have similar negative consequences.

The Role of a Caregiver Is Complicated

Over the past 20 years, I gained substantial experience and expertise in the field of caregiving. Caregiving is viewed as a family matter and family responsibility. This thought process lends to the idea that family caregivers should be able to answer the question, what is the role of a caregiver.

The healthcare system continues to assign a higher level of medical and nursing tasks to family caregivers who feel unprepared for the job. When the health needs of elderly parents increase caregivers perform tasks previously done only in nursing homes and hospitals.

The use of lifts, blood pressure, and blood sugar machines, feeding tubes, changing catheter bags, special diets, and wound care are now the responsibility of the caregiver. The answer to what is the role of a caregiver is now broad and far-reaching.

Caregivers are responsible for managing medical tasks, managing the home situation, coordinating care within the healthcare system, advocating with doctors and other providers: bill paying, and a long list of other caregiving tasks.  The progression of the role of a caregiver has transformed into a full-time job with a variety of needed skills to be successful.

Family Caregivers Fear Making Mistakes

Family caregivers fear making mistakes. Worry exists about the health conditions of aging parents and spouses. Caregivers experience an emotional roller coaster because of constant worry about something that will go wrong.

Through my personal experience and 20 years industry experience, it became clear to me that most family caregivers don’t have the knowledge, the skills or the know-how to understand and manage caregiving responsibilities when loved ones have health issues. This was the issue in my family even though several children were college-educated, and my sister was a nurse.

Caregivers do their best, but that’s not always enough. In my family, everything we did was not enough to help my parents avoid declining health. Over time my mother became frailer and appeared to be 20 years older than her actual age. We watched her suffer and felt powerless to do anything.

Because of personal and professional experience, I became more determined to help caregivers find ways to avoid what my family experienced and the errors of the inner workings of the healthcare system.

Expertise In One Area Does Not Translate to Caregiving

Caregivers think they have the skills. They want to believe they can do it all. Caregivers take on huge responsibilities and do whatever it takes to get through the day. Not realizing that care for aging adults could be better managed is a mental gap that caregivers experience when they become overwhelmed and burned out.

I translate this “not knowing” to the process of publishing my book, The Caregiving Trap. Entering the publishing world, I felt out of my element. There were discussions about the book cover, the title, the type size of the book. In publishing, there are “knowns” to insiders of the publishing industry. For example, limiting the length of a book to less than 300 pages.

Similar examples exist in the healthcare industry. Use of the acronym ADLs which means activities of daily living. The necessity for referrals, pre-authorizations, and pre-work for medical treatments. Insurance limits for full payment for rehabilitation stays, 3-day discharge notices, care conferences and other processes that are “knowns” to healthcare workers but that shock caregiving families.

Another example of my gap in knowledge about publishing included receiving the galley proof of the book. The type was so small even I couldn’t read it—wearing my reading glasses and squinting.

Small type size is impractical for anyone over 50 years old who is farsighted or who uses a computer all day.  I eventually won that battle. There were other disagreements that I did not have the expertise to win.

Caregivers Don’t Know What They Don’t Know

Why do we use professionals in any industry? It’s because they know more than we do. Professionals save time, money, and stress-related to completing tasks for which we lack the expertise.

I would never complete my income taxes or change the oil in my car. Household repairs are also off my list. I know my limitations. If anyone has a question about caregiving, I have an answer.  

When family members don’t even know they are a caregiver, it’s difficult to realize that skills may be limited.  Now that I know I was a caregiver for my aging parents, and I have 20 years of caregiving experience, I realize that we could have done so much more for my parents. We could have reduced my mother’s suffering.

I know this now because of my role as a care manager, court-appointed guardian, medical and financial power of attorney. The difference between being a helper and a caregiver is the degree of responsibility that a person is willing and able to accept.

Hindsight is 20:20

My mother didn’t know the questions to ask about her medical condition. She trusted the doctors and went along with their recommendations. Elderly adults find themselves in similar situations. Some view doctors as “God-like” who should never be questioned.

We didn’t know the questions. I take responsibility for not being more proactive. After my mother’s death, I was more proactive with my father. After the phone call about a suicide attempt, I made my sister take him to the hospital for a psychiatric evaluation.

She was more worried about the neighbors finding out that my father was depressed than the thought of my father attempting to kill himself. Family members do not always think rationally when caregiving situations go off the rails.

What Is the Role of a Caregiver?

The role of a caregiver is to work with an aging parent or spouse to ensure that well-being and health receive the proper attention. If loved ones don’t know what to ask, the caregiver asks. When a concern exists, the caregiver advocates.

There is a duty and a responsibility to be proactive to identify options for making the caregiving situation better. The same duty exists to discuss options with the person needing care. There are times when aging parents may be viewed as stubborn and refuse help or refuse to take action. When this happens, discussing the long-term consequences of the refusal is one course of action.

By having a better understanding of how our actions today affect our future quality of life, we have the opportunity to make better decisions. Looking back, we could have made better decisions for my parents. Their lives—at the end of their life—could have been less of a struggle.

This is the opportunity that caregivers have today. By becoming proactive and more informed, the care of loved ones can be better, easier, and less worrisome. This ease does not happen without effort to learn and to share with other caregivers.

Online courses and support are beneficial for the caregiver and the aging adult. Learning to be a caregiver instead of a helper eases the way.

Looking for more help managing the care of aging parents? You’ll find what you’re looking for in Health and Chronic Disease

©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, You Tube, 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.

About Pamela Wilson

PAMELA D. WILSON, MS, BS/BA, NCG, CSA helps caregivers and aging adults solve caregiving problems and manage caregiving needs through online programs, live support groups, and an extensive caregiving library that includes articles, podcasts, videos, and webinars.