Page Utilities
Suzanne Geffen Mintz, Capital Books (page 3 of 8) Page 3 of 8
Being Proactive versus Reactive
Knowing more about yourself and the circumstances that could have an immediate effect on your situation is a start, but taking charge of your life shouldn't end there. Over and beyond gaining an understanding of what you bring to your caregiving situation, there are other actions you can take to boost your confidence and give you more of a sense of ease. It is important to remember that, although you can't control everything that happens, you do have the power to choose your responses and whether you are going to let circumstances take control of you, or you are going to take control of circumstances.
I strongly believe that family caregivers need to become strong advocates for their loved ones and themselves, and that we need to be proactive and resourceful in finding the information and help that we need. Having said that, I also recognize how difficult it is for already over burdened caregivers to find the energy and wherewithal to battle unresponsive healthcare and social-services systems, and unfortunately, sometimes other family members as well, and to meet their loved one's needs, especially if being a fighter doesn't come naturally.
I also know that many of you will do just that. You will find an inner strength you didn't know you had and you will make an effort—indeed, are making an effort every day—to resolve yet another problem with the insurance company, put the pieces in place that will allow you to get away for a day of respite, track down the cardiologist and get him to coordinate with your loved one's primary care doctor. It's hard to be an advocate for yourself and your loved one, but if you or someone you delegate to are not, then life will be that much more difficult because caregiving doesn't come easily, and the services and supports we need unfortunately aren't part of a seamless whole.
Being an advocate means recognizing that you and your loved ones are consumers and, as consumers of our healthcare system, are owed quality care, respect, and responsiveness.
Being an advocate means recognizing that the squeaky wheel is often the only one that gets attention in a too-busy system.
Being an advocate means fighting for what you believe is right—whether that is an extra day in the hospital or a timely report on a new set of tests. It's getting your boss to understand that now you need some time off, but that you have a plan in place for meeting your responsibilities to the company, and being an advocate is also about getting at least one other family member to recognize that now and then you are going to need a break and they are going to have to chip in with hands-on care.
The dictionary defines advocate as both a noun and a verb. As a verb it means, "pleading on behalf of something or someone." A suggested synonym is the word support. That being the case, you may have long been an advocate without even realizing it.
Parents know that it is important "to pick your battles" so that you aren't arguing with your kids all of the time, and so that when you put your foot down they know that you mean it. Another way of expressing the same thing is to say, "Don't sweat the small stuff." All of this is good advice for family caregivers who have to conserve their energy and decide what's worth making a fuss over and fighting for. But just recognizing what is important enough to expend your energy on is a big step and a positive advocacy approach.
How are you going to be proactive? How are you going to be an advocate for your loved one and yourself? There are many possible ways. For instance, are you going to educate yourself about your loved one's condition and your rights as a healthcare consumer so you can play a real role as a member of the healthcare team, or are you going to accept the information provided to you as gospel without asking questions or trying to insert yourself into the healthcare process?
Are you going to be proactive and do some planning, such as obtaining a medical power of attorney so there will be no question of your authority to speak for your loved one if he can't speak for himself? Are you going to learn skills that will make caregiving a safer process for you and your loved one? There are a variety of ways you can build your confidence and capabilities, but you first need to choose to take charge of your life. Research, planning, and skill development are just three of the ways to develop your confidence and capabilities. Don't assume you have to do all of these simultaneously or all by yourself. Part of the process of taking charge is prioritizing and coming up with a game plan. Your SWOT analysis can play a role.
Research Takes Many Forms
Not knowing is being lost.
—Rhonda Huffman, Toledo, OH
For many people anticipating becoming family caregivers or those newly thrown into it, one of the first things they want to do is learn about their loved one's condition. Having a base of knowledge about his diagnosis can put you in a better position to ask the doctor meaningful questions about treatments, side effects, and prognosis, and also help you better evaluate recommendations given. Do you know some of the common terminology associated with your loved one's condition? What research could you do to increase your knowledge base and, with it, your confidence?
One place to go for information is a voluntary health agency (VHA); that is the general term for organizations like the American Heart Association, Easter Seals, and the Brain Injury Association. VHAs focus primarily on finding a cure or treatments for the particular illness or condition they represent, but depending on their size and their mission many provide all sorts of services to help patients cope with their diagnosis and its impact. In the past few years, some VHAs have begun to recognize that their sphere of concern needs to include family caregivers as well as patients, and consequently your research may turn up information and programs specifically designed to help you cope with, and become more capable at, the job of family caregiver. In the resource section there is a list of many VHAs, their Web sites, and their tollfree phone numbers.
From A Family Caregiver Speaks Up: It Doesn't Have to Be This Hard by Suzanne Geffen Mintz, Chapter 4 "Building Confidence and Capabilities: Making Choices, Taking Charge." Capital Books, Inc., 2007. Reprinted with permission. All rights reserved. www.capital-books.com.
See All TBI Topics