On Being a Credible Caregiver Advocate

Adrienne Gruberg, Founder and President of The Caregiver's Survival Network, with SchatzieI may have mentioned in other posts how difficult it is to find a topic to write about that isn’t an emotional powder keg for me. It’s just fifteen months since Steve died and visiting “the scene of the crime” is not always easy. What I’ve decided to write about now can serve you well in many ways. It’s also something that is all about you, rather than all about the patient, though the benefit to the patient is immeasurable.

It’s simple really—dress and act the part of a professional caregiver. You make a first impression on people every day, and you only have one chance to make that meeting work for you. Nurses, PA’s, maintenance staff, food providers, and of course physicians meet dozens of new people daily, and if you can treat every introduction as an opportunity to make a new friend or ally, you’ll be ahead of the game. In my case, it also gave me a chance to focus on myself—how will I present myself today so that I will be remembered in a positive light and make a good impression? It kept me from letting myself go. It forced me to take care of myself and to focus on myself.

Steve and I sat in many waiting rooms with many other couples over the years of his illness. Husbands and wives. Parents and children. Brothers and sisters. Friends with friends. All patients with caregivers. Clearly, no one was there to have fun; but the time spent there allowed me to really observe their behavior. Some people were there for regular check-ups, and after their first time, they’d know what to expect. Waiting. Waiting. And more waiting. A brief physical exam. Blood’s drawn and sent to the lab. Finally, you’d get to see the doctor and depending on what he or she has to report, you might or might not get treatment that day. If there was treatment, they first had to prepare for whatever it was. Again, after your first experience, you should know that it’s going to be a frustrating, anger-making, unpleasant day that’s hours longer than it should be. You can sit and bitch and moan about it time after time, or you can be prepared and go with it. Why let it get to you? You have so much more to be upset about.

Because there’s so much going on that you have no say over, consider how your appearance and attitude can help you hold onto some sense of control. Are you neat and clean? Do you carry your impatience and anger from the waiting room to every other situation and person you have to deal with that day? Are you polite? Are you prepared to ask the right questions? Are you ready for schedule and treatment changes throughout the day? You can’t be ready for everything, but you can make a decision to approach these days, and every day really, coming from a position of power.

I can only tell you how I faced each day. Since most treatment days started at the crack of dawn, I’d prepare for them the night before. I’d make sure Steve and I discussed everything we wanted to cover with the doctor have all of our questions written down so we woudn’t forget them. I’d make sure I had his medication list with both dosage and schedule. I kept addresses and phone numbers of all of our doctors with me. Medication lists and physician lists were something I always had with me since I never knew if there would be an emergency. I’d make sure I had bottled water and protein bars with me since I never knew when we’d have the chance to eat. And though you might think it frivolous, I made sure I had my clothes for the day laid out at bedtime. I wanted to make whatever control I had work in our favor.

Here’s where it gets to be about YOU. Doctors can be influenced by your appearance and demeanor. Doing what you can to make them respect you, like you and remember you will always work in your favor. I presented myself as I would at most job interviews. I dressed professionally because I wanted to be taken seriously. My husband had enough to worry about without concerning himself about whether or not I was “ready for action.” I actually remember one time near the end of his life when we made a trip to the emergency room on a Sunday morning. I threw on my jeans and a sweater and ran to ring for the elevator. While we waited, he looked at me and said “You’re wearing that?” He liked to see me dressed nicely and he knew that the hospital staff always took me more seriously when I assumed a respectful and professional attitude

When Steve’s mother, Sylvia, was going through chemo, I was at her side every day. I was there promptly at ten a.m. and left at seven-thirty every night – after “Jeopardy.” She was a creature of habit and keeping to a regular schedule made her feel more secure. Syl was always happy to see me looking well. I was contributing to her positive outlook and she knew that the staff was always responsive to my requests and questions. I wanted to make sure they’d know who was on the other end of the phone when I called the nurse’s station at midnight to check up on her.

Caregiving is a full-time job and I treated it as such; I also loved the people I cared for very much. Looking nice for them in trying times was a morale booster for them and for me, and it made me a far more credible advocate for my family – on sight. I watched staff interact with people who clearly didn’t respect the nurse’s position. Being considerate and cordial is another thing that will work in your favor. You may need these people in the future and they’ll remember you – for good or bad.

It’s really all about taking caregiving seriously. It’s a job, and not an easy one; but you have the power to stay calm, roll with the punches, be prepared and look the part of a professional. Take charge of what you can. You’ll feel better for it.

Written by Alexandra Axel
Alexandra Axel was the first founding staff member at The Caregiver Space. As a New York native, Allie grew up people-watching and story-collecting, eventually pursuing her undergraduate degree from The College of New Jersey in sociology and creative writing. At The Caregiver Space, she worked with social media, graphic design, blogging, and program development to brand and grow an online community composed of, and focused on, caregivers. From the seedlings of an idea to the thriving community that it is today, Allie was there from the beginning to support the evolution of The Caregiver Space. Allie enjoys writing poetry and short fiction, devouring books, biking, crafting, urban agriculture and imperfectly cooking. She currently resides in Brooklyn with her pup, Hen.

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