Page Utilities
Suzanne Geffen Mintz, Capital Books (page 4 of 8) Page 4 of 8
The Internet is the place of choice to do research these days. You can read articles written for the professional community, chat with others in similar circumstances, post questions for a doctor, create a medical journal for your loved one, stay up on the latest legislative activities that impact services for those with physical and mental disabilities, and have a conference with other members of your family. The list of what you can find out and what you can do on the Internet is seemingly endless. Information is empowering and, generally speaking, the more you have the better off you are. I'm definitely not an Internet whiz kid. Nevertheless when I want and need to know something about MS, I get online and search away. I now know the addresses of some specific MS sites, but at the beginning I just went to a search engine and typed in MS. A list of sites to look at popped up. If you are just getting started, that's what I would suggest you do. Don't have access to the Internet? I bet someone you know does and they'd be happy to help out in this way.
The internet has been my lifeline to the information I need.
—Janet L. Kieffer, Mingo Junction, OH
Some years back, when Steven started having difficulty urinating and a visit to the doctor suggested this was probably a long-term problem, I immediately turned to the Internet to learn more about his condition. We were very aware that incontinence is a big problem for many people with MS, but we'd never heard of anyone who suffered from urine retention.
It never entered our heads that MS could cause someone to be unable to pee. After a couple of hours in front of the computer, I surely wasn't an expert on the issue, but I knew enough to talk intelligently to the urologist and to ask reasonable questions. I even happened on a research article he wasn't aware of. Talk about a sense of confidence, let me tell you. When I faxed that article to him I felt so much more capable as an advocate and a family caregiver. And it was amazing how differently the doctor began to treat me. I wasn't just Steven's wife anymore; I was an important player in the discussion and decision-making process who was to be taken quite seriously.
Learning as much as you can about your loved one's condition is a critical activity that isn't only important at the beginning of your caregiving journey but one that continues throughout it.
Research is a mixed bag. Obviously I read everything I can get my hands on . . . and sometimes I feel more in control. Other times, it just highlights what might be in the future and I don't always want to think about it.
—Anita Bluestone, Teaneck, NJ
Research has been a big help in helping us to understand the tests that are being done and what to expect next. It helps us to make more informed decisions and feel that we still have some control over our lives and decisions.
—Linda C. Jackson, Norman, OK
Rules of the Game
There's another kind of research that is equally important to do if you want to feel more in command of your caregiving life. It's finding out the rules of the game. What I mean by that is the world of healthcare is complex. It has its own systems of operation designed to help the medical personnel involved do their jobs, prevent injury, and maintain proper records.
These systems are not designed to accommodate families. For instance, it is important to understand that a doctor's legal responsibility is to the patient, not to you the family caregiver, unless of course you hold medical power of attorney. If you and your loved one want you to be part of the decision-making process, want you to be present during examinations and tests, then it is your loved one who must communicate that to the doctor, assuming she is mentally and physically able.
Just as the medical profession as a whole has its rules, so do physicians' offices. And just as with other businesses, rules differ from one to another. A good way to find out how a doctor's office works is to get to know the office staff. Learn people's names. It goes a long way toward creating a relationship as opposed to just an exchange of information. The office manager or nurse can tell you the best time of day to reach the doctor by phone, what days and hours the office tends to be busiest, what procedures must be followed if you need a prescription refill, and even the lead time involved if you want to make an appointment for a routine exam. If you know how the office is run, you are much more likely to avoid frustrating situations.
The same is true in emergency rooms and when someone is admitted to the hospital. There are procedures, and in some cases actual rules, that must be followed there too. For instance in the ER, especially if it really is a dire emergency, your job is to provide necessary information quickly and then get out of the way. In the hospital, one thing I have found is that providing a typed list or computer form of Steven's critical information is immensely helpful for the medical personnel I have to interact with. It's helpful for me too. I try to update it periodically and always take a copy of it and Steven's living will and power of healthcare attorney with us on any hospital visit. You may have heard the term personal electronic health record (PEHR) or personal health record (PHR). These are records that are "owned" by the patient. You and your loved one are the only people who connect across all healthcare settings: doctors' offices, hospital, rehab, home. Therefore you are the only ones who can provide a complete record of your loved one's history and status. The field is still in its infancy and at this point I find it easier to use a typed form that includes core information about Steven's condition and his functional abilities. You can read more about personal health records in the article in the appendix.
Name and Address: Steven Mintz
Home Phone: XXX-XXX-XXXX
Insurance: Company and Policy Number
Medical Issues: Mr. Mintz has Multiple Sclerosis.
He requires urinary catheterization. He has no other medical conditions,
but there is a history of diabetes
in his family.
He has no known allergies or adverse
reactions to medications.
Both his father and mother are deceased.
(Dad heart, mom cancer.)
Blood Type: O Positive
Care Issues: Mr. Mintz is in a wheelchair. He requires help with all activities of
daily living.
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.
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