I’m very excited to share this guest post below with you. I “met” Rob on Twitter (@rob_cares). He’s an expert when it comes to caring for the caregiver. Enjoy his extremely helpful guest blog below.
Caregivers take on multiple roles.
A family caregiver is the eyes and ears of a loved one that is unable to operate independently due to an illness or injury. The compassionate volunteer becomes the coach, cheerleader, social director, meal planner/chef/server, housekeeper, communicator and coordinator of virtually any and all activities for, and on behalf of their patient. The list can be long and for many, rather intimidating.
Why is it intimidating? Above all else, the caregiver must evolve into a medical surrogate.
In many cases, patients are released from the hospital much sooner than what used to be the case in the past. The caregiver is now responsible for providing the remedial care that previously was administered by doctors and nurses. Hence, the role has taken on even greater importance in ensuring the well-being of their loved one.
The coordination, timing and dispensing of multiple medications (including injections) is all part of the daily routine. Understanding how to operate sophisticated medical equipment such as respirators, feeding tubes and other devises is essential for the caregiver.
Personally, I cared for my wife, a cancer patient. Though we spent many days and nights in the hospital, the majority of my caregiver activities took place while at home. This included changing bandages and anticipating the side effects that could arise from the medications she was taking, such as steroids.
There was so much to learn, know and do. Admittedly, at times, I felt completely intimidated and incompetent.
What helped me the most in becoming a competent caregiver was the following:
• Learn everything possible about the medical condition afflicting your patient. With an abundance of knowledge, you will be better prepared to act on your loved one’s behalf. It’s important to anticipate complications and address each prior to potentially serious issues arising. As the treatment protocol changes, so must your understanding of how to manage it.
• Know whom to contact when medical assistance is needed. Be well-versed in all contingency plans should they become necessary. Knowing whom to call is critical. Time is typically not on your side should an emergency situation develop.
Know who to contact for every emergency.
For us, we always began with our family physician, who we turned to for support and advice during most non-emergency questions and events.
A local oncologist was needed in the event my wife had to be admitted to a hospital in our hometown. We were a 90-minute drive to Moffitt. In most cases, a drive of that distance was out of the question due to the reason immediate hospitalization was required.
In our case, when my wife suffered from neutropenia, which is a life-threateningly low white cell count caused by chemotherapy, we had to get to a hospital immediately.
Other members on our team included our Moffitt oncologist, surgical teams (there was more than one) and pharmacists (local and at Moffitt). Other doctors, nurses and friends with medical experience and expertise should be available in back-up roles if your “first team” is unable to be contacted.
• Keep records of everything that takes place. This includes when medications are taken, the number of pills and dosage, if applicable, adverse reactions and anything else worth mentioning. I found my logs to be extremely helpful to the medical teams whenever an emergency or unusual medical event arose. Having records will assist the treating physicians with obtaining a clearer picture of the symptoms and possible reasons behind them.
• Have a transportation committee available. If unable to transport the patient to doctor’s appointments, plan well in advance for that contingency. Schedule those willing to help, and coach them as to how to meet the demands of their role in your absence. They may not be able to provide as comprehensive a report back to you as you might have been able to produce yourself had you been able to attend personally; however, having someone you know acting on your behalf is the next best option.
This is but the tip of the proverbial iceberg. The caregiver does everything that the patient cannot do for himself or herself. In some cases, you will surprise yourself at just how capable you can be when no other person is available or willing to undertake these challenging responsibilities.
Your role is vital to the health and well-being of the patient. In many cases, their life depends on you.
Is there anything more important, and daunting than that?
BIO: My name is Rob Harris. Like most people, I very unexpectedly became an at-home caregiver when my wife was first diagnosed with cancer.
Since then, I have been an at-home caregiver, on and off, from 1990 until present day, for my wife and best friend, Cindy, who is a two-time cancer survivor. Presently, she continues to experience challenges with a leg amputation that has forced her to remain wheelchair-enabled since January, 2010. As such, I continue to provide caregiver help, over two-decades later.
During her most recent battle with a very deadly form of cancer, which began in 2006, I was her exclusive family caregiver. More specifically, I was her in-home caregiver and also watched over her each and every day she spent in the hospital. My mission was to provide exceptional caregiver help and support day and night, seven days a week. From this, I gained invaluable knowledge about how caregivers can provide exceptional caregiver support to their loved ones.
After providing years of caregiver assistance, it was recommended that I share some of the valuable information I gathered during my journey providing caregiver help to my wife. Initially, I was persuaded to write a chapter to see if I wanted to write a book. I resisted. At first I didn’t believe I had enough information to share about being a family caregiver.
Surprisingly, the words flowed, as did the number of Caregiver Tips I developed from my personal experiences.
Above all else, in writing my book, my memory of the events as a family caregiver were vivid, as if they had happened just moments before.
What I recalled above all else was the feelings I had when I learned my wife’s life was in danger. The two most prominent emotions were FEAR and CONFUSION. The reason for the fear was obvious. My confusion came from not having any idea how to be an in-home caregiver. I had no knowledge, no experience, and nowhere to turn to learn how to provide caregiver help to my loved one.
Somehow, that did not quench my thirst. I needed to do more. My goal was to help as many individuals who were, or were soon to be, at home caregivers as I possibly could.
I wanted other frightened and confused caregivers to know they had a friend they could turn to for caregiver support and advice. I wanted them to know me personally, even though the population of those in need of caregiver assistance is enormous.
Thus was born the concept, the phrase and the logo: “robcares, caring for caregivers.”
Please visit my website: www.robcares.com. Along with my many blogs and valuable information for caregivers, patients and the medical community alike, my other social media outlets can be accessed via my website. I personally correspond with anyone in need of information, comfort and support.