Caregiver Perspective: Asking for Help
Last updated: February 2023
Communication is a tricky process. When I make a statement, not only am I projecting what I think I intend to say, but I am also creating in my mind an image of how I think you will receive my message. I tell myself a story about our conversation before we ever have it. That means that by the time the interaction occurs, I already "know" the outcome of the conversation in my gut before I speak the first word. I may be so focused on what I "know" you're going to do based on the script I've written in my mind, that if you deviate from your “lines,” I’m likely to miss what you say in real time.
Often, that’s how miscommunication occurs. One party throws in an unexpected statement while the other party prepares to argue their point on something about to be said and neither party hears what the other one is sharing. Both spend their time developing their defense ensuring victory for their cause—the winner being the one who plays "point-counterpoint" best. Neither party listens trying to understand what the other side needs or wants. Each side wants to come out ahead.
We’ve learned to communicate in this fashion about almost everything. Now, take this style of talking and bring it to caregiving where one person wants to maintain independence, and the other person wants to keep them safe from harm. Sounds like the same goal but often those two goals place them at opposite ends of the field. One is trying to find a way to do more without restrictions; while the other wants to shut them in and protect them resulting in them doing less. Thus, begins the conflict.
Recipe for disaster
The communication further gets scrambled through incorrectly reading body language or adding a twist of emotion altering the intent of the message delivered.
Body language and emotion + a recording in our mind of a conversation that has words missing (because we were too busy drafting our closing arguments) + a preconceived expectation regarding the outcome of that discussion based on what we expected to see and hear before the meeting = a relationship between the caregiver and the one receiving care that may become tense and filled with misunderstanding.
Reluctant to ask for help
Having worked in the healthcare industry for over forty years, I’ve observed a lot of human behavior. While it would seem that asking for help would be simple for most people, it's very complicated. I’ve seen that individuals with chronic illnesses often do not advocate well for themselves when it comes to pain control and self-care. Some have no trouble asking for what they need. Others don’t ask at all. Many seem to just “be over” the whole chronic illness thing and don’t want to call attention to themselves anymore. It’s like, “If you can’t see I need help by now, you’re never going to get it.” They fall under the group I think of as using the “hint or partial disclosure” method of miscommunication. That group likes to do the following:
- Minimizing symptoms by making light of them, under-rating how bad or how often symptoms occur, or only mentioning one or two things that have happened rather than all symptoms
- Hinting there might be something wrong by saying “Would it be a problem if…?” or “My friend has a problem,” and “I read about xyz, do you know anything about it?”
- Not telling the healthcare worker about a problem at all but waiting to see if the HCP finds the abnormality on lab work or exam. It’s as if they think working in healthcare gives the provider magical powers like x-ray vision or seeing into a crystal ball.
Fear of rejection
I think people don't ask for help out of a fear of rejection at times. I understand their concern. Rejection hurts. However, what do you have to lose? You already don't have support. It's only going to get worse, and your situation might get better if you asked specifically for what you need. However, let’s be realistic about where you go to get that help.
Be realistic who you ask for help
If you ask for help from an individual whose personality is self-centered, independent, and who puts him/herself first in all things, expect to be rejected. Not everyone can be a caregiver. It takes a particular type of personality to handle caregiving well, and then, it's difficult. The "me first" personalities cannot handle it. If your default caregiver has a “me first” personality, look for conflict in your future, unfortunately. If you have a relationship with that person that you want to keep, seek counseling promptly for assistance on how you and your caregiver can work together to strengthen the relationship and meet both of your needs.
Caregiving requires a strong soul, courage, and selflessness. It's not for the faint of heart. Once you identify an appropriate caregiver(s), work on your communication with them.
Good communication points
In your communication, strive to be
- Clear in what you say
- Include enough description that they can “see” what you need
- Timely in when you share information
- Accurate in the details, and
- Respectful in delivery of the information.
Relying on someone else for assistance is humbling. Giving that help can be an honor when all the pieces of the puzzle fit together well, but if pieces are missing, the picture gets ugly and the puzzle gets discarded. Strive to keep all the pieces together.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: