Burnout, Communication, and Understanding: How Advocates Advocate for Themselves

If you’ve found yourself at GNANOW.org, you must already know the important benefits that patient advocacy brings to everyone, but the side we don't often see or mention is the needs of individual advocates. In this blog, I will dive into three aspects of the advocate experience. Understanding and enacting these tips will greatly improve your life as an advocate and will help you continue your practice in a sustainable manner.

First, I would like to talk about a word I recently learned: Enervated.

I know what innervated means (to supply with nerves), but what does enervated mean? A quick google search let me know that it means exhausted or worn out. That’s me, I am exhausted and worn out. I’m enervated.

So, how many times this past week have you felt enervated? What is draining your energy? It doesn’t always have to be an illness that makes you feel enervated; it could be feeling burnt out or like you have too much to do. It could be that you haven’t been sleeping well and you are physically tired. When you figure out what zaps your energy, you can decide to do something about it or let it ride. Not everything is self-limiting, but you really do have the power to set boundaries, conserve our energy and feel better instead of letting that feeling of enervation take over our lives.

Here is a method to make a check-off sheet and see what are your true energy zappers or energy vampires.

The only person that will set boundaries for your own good is you. When you are sick with a cold, you will have to take care of yourself because no one else will, and the same goes for any kind of burnout or enervation.

Get a sheet of paper and across the top, label Energy Zapper Tracker. Under that, going across the page, create three columns: Physical, Mental, Emotional. Now, when something zaps you, write down what it is or who it is in the appropriate column. Continue this process until you feel like you have a pretty good idea of who and/or what is zapping your energy (for me it was about four days).

The next step is to decide what to do to conserve your energy. Do you need help? Do you need to take a break? Do you need to be a better manager of your energy? No judgments allowed. You are on a fact-finding mission.

The only person that you can change is you. You can change how you react or deal with a situation, but you cannot change another person.

The only person that will set boundaries for your own good is you. When you are sick with a cold, you will have to take care of yourself because no one else will, and the same goes for any kind of burnout or enervation.

Effective Listening and Empathetic Communication

Another important skill for an advocate to practice is knowing what your role is when you are listening. When anyone (patients, clients, or even friends) talks about their current problems or concerns, usually they are looking for one of two things from you, the listener. They either want you to simply listen and support them while they are venting, or they want to find a solution to their problem. The confusion comes in when you fail to set the boundary and find out which version of the listener role you are acting as in the moment.

If you are anything like me, you get into so much trouble by assuming others are asking for your help, ideas, or solutions, when really, they are just venting and want to be heard. I am not opposed to listening and letting someone be heard, I just need to know that is what you want. Have you ever noticed that the same people that want you to “just listen,” are also the same people that get pissed when you don’t offer solutions or help them when they are ranting and raving? It truly is a no-win situation. You get into trouble when you just listen and then you get into trouble when you offer solutions or suggestions.

If you are anything like me, you get into so much trouble by assuming others are asking for your help, ideas, or solutions, when really, they are just venting and want to be heard.

A way to try to solve this problem ahead of time is to create an agreement with your conversation partner before the listening session begins. What will this agreement do? It will get everyone on the same page at the same time. It will improve your communication. Since communication is the key to everything, it might just prevent needless fighting, anger or hurt feelings.

The biggest takeaway from this conflict is that preemptive communication is key. If a client needs to vent or discuss something, but you either cannot handle it at the moment or have something else that needs to be dealt with, the best option is to set a time to talk later. Your client may be sad but at least you have been direct with your needs and can help with theirs later.

Another tip is to practice active, attentive, and empathetic listening. You should never interrupt. You should ask for clarification when they are finished with their thoughts when needed. A good way to know if clarification is needed is to repeat back to what you have heard to make sure you understand. Make sure to be fully present in the conversation; do Not look at your phone or the TV. Make a genuine effort to understand the emotions and feelings that the other person is describing. You could ask, “How do you feel about this?” They probably want to feel supported by you. Ask questions to understand where they are coming from and what they are feeling about what has happened.

Caregiver Roles

Finally, I would like to spend some time talking about different roles that caregivers often take and the importance of finding out which caregiver role fits you right now. I have come up with seven different caregiver roles below.

Some of you have never identified as a caregiver, it is just something that you do. You are helping your mom. You are helping your dad. You are helping your partner. You have never viewed it as caregiving, they simply need help and you will help them. It is that simple.

You never even give it a second thought; that is what family does for each other. I get it. I have been there too. It is what good friends do for each other too. While we may not always identify with the word “caregiver,” that is what we do. A lot of us act as the Lone Ranger. We are fine for a while; we can manage our lives, our jobs, our homes and all of our loved one’s stuff, for a while. But then, after months, you look up one day, and ask yourself, «How did I get here?» It happened so slowly and it wasn’t too bad or too hard. But, now, it takes a lot more time and effort than it used to to help your loved one.

Take a moment to read through the following list and think about how you may or may not fit the description of one or more of the following Caregiver Types...

1. Hands-on— You are physically there, and you help with their daily needs: Dressing, bathing, toileting, brushing their teeth, meal preparation, feeding, etc.

2. Companion care— Your patient can do most things on their own, and you are there to provide company, emotional support, and make some meals. You may be asked to handle medication reminders and light housekeeping, take them to an appointment or run errands.

3. Long-distance caregiving— You probably live an hour or more away from your patient. You may be helping with money management, and you may be in charge of making appointments, finding in-home care assistance, and planning for emergencies.

4. Accidental caregiver— You did not see this coming right now. You know that help is needed, but are not sure what you are good at. You learn as you go and ask for help when you need it.

5. Reluctant caregiver— You may find yourself responsible for someone who you do not get along with or even someone who has abused you in the past. This one is very difficult to handle for the caregiver, and it may be best to find outside help immediately. In this case, transitioning to the long-distance caregiving camp may be the best option here.

6. A Swoop-in, create havoc and swoop out caregiver— These folks need an ass whipping! They come in every once-in-a-while, do whatever they feel like without regard to the care receiver or the care team, and get things stirred up. Then they leave. I like to assume positive intent, but I’ve found that, most likely, these folks are just waiting for the care receiver to die so they will not have to be bothered.

7. Provider of support to the caregiver— Physically and emotionally help the caregiver to excel at being a caregiver. You help the caregiver with the chores or things that need to be taken care of at their house or the house of the care receiver. (Laundry, house cleaning, cooking a meal or two, mowing the lawn, cleaning the gutters, running errands, etc.)

Many advocates get their start in caring for a family member, and this can be some of the most emotionally difficult work. You find yourself worrying more about your loved one, but you can’t remember the last time you had some free time. Organizing and planning are your best friend in this profession. What would help you the most in the next three months? Do you need an easy to use, fill-in-the-blank essential information binder? A well-organized binder can help eliminate stress before it happens!

When creating a binder, your goals are:

1. Decrease your stress level

2. Empower you to be more in control

3. Help you make better decisions

4. Information will be easily accessed when needed

What to include in your Binder:

1. To do list

2. Banking and retirement Information

3. A list of bills with due dates

4. A list of Doctors and other Health care providers

5. HIPAA release form

6. Home information (home, vehicles, rental property, security sustems)

7. Income to be received (from Social Security, Retirement, Renters, etc.)

8. Medical bills and EOB’s (explanation of benefits, with tips and info)

9. Medical history (incl. diagnoses, surgeries, devices used, etc.)

10. Medicare and Medicare Advantage Plan (how to check on EOB or MSN for coverages and benefits)

11. Medications (list of medications, administration check-off list, incl. over-the-counter medications0

12. Online accounts (User names, Passwords, Answers to security questions)

13. Any other miscellaneous documents

Available as a Binder Kit (with pages in sheet protectors, highlighters, ink pens and a mechanical pencil)

OR

As a downloadable, fillable PDF file for Single use or Family Use

-Pat Collins