1st Dec, 2002
Real Living with Multiple Sclerosis
EVERY CAREGIVER I've ever talked with has mentioned something they wished they'd done before their loved one had to go to the hospital. I know I've had more than my share of bad experiences. The first time, I wasn't assertive enough in the emergency department (ED), and my husband Colin and I had to wait much longer than necessary. I vowed I would be more aggressive the next time.
My husband's visiting nurse found that his blood pressure (for which he's taken five different medications) was extremely high one day and suggested that I take him to the ED. This time, i pestered the ED nurses until they admitted him. By the time the ED physician came to see him, Colin's blood pressure was within normal range, yet still high enough for concern. The physician said, "Next time his blood pressure goes up that high, take Colin to his family physician." I really lost it and told him that I'd bring Colin back to the ED anytime I felt he needed immediate treatment.
What's in the Bag?
Since then, I've learned how to better handle a rush to the ED. I keep all of Colin's necessary papers in a small briefcase-which I named the ED bag-along with a writing tablet and pens. I hope you'll find the following list of ED bag items to be valuable.
An advance medical directive (AMD) will inform the physicians and hospital staff of your loved one's wishes with regard to his or her medical treatment. If your loved one doesn't have an AMD, get one. An AMD will protect you and your loved one if his or her ability to make decisions is compromised. Most family members are under a lot of pressure when they rush to the hospital on a moment's notice. If an AMD is in place before the need arises, a lot of worry and concern will be eradicated. As part of the AMD, your loved one can assign someone of their choosing to be their health care agent in advance, allowing their agent to make all decisions when necessary. The following are several types of AMDs. (Laws vary from state to state, so not all are applicable everywhere.)
A living will is another important document to add to your hospital bag. Many times, the living will is something we'd prefer to shy away from. But it's an important document that's only implemented if your loved one is in an end-of-life situation.
A do-not-resuscitate order (DNR) can only be written by a physician. Please inform your loved one's physician of this wish so this order can be put into effect before it's needed. The DNR gives permission to the medical team to refrain from resuscitative efforts if your loved one's heart stops or they stop breathing. When resuscitation begins, it's difficult to stop.
A medical power of attorney, also known as a health care proxy, gives the chosen health care agent the right to make medical care decisions if their loved one is no longer able to express his or her feelings.
Make several copies of all of these documents. One copy should go in your loved one's medical records. One copy should go to the hospital at registration and be placed in your loved one's hospital chart. Keep another copy for the ambulance, if one needs to be called; one for your ED bag; and another for your personal file at home.
If you've ever taken someone to the hospital, you know about the enormous amount of paperwork involved. I keep a list of important facts about my husband and his medical history in my ED bag. It lists his name, age, birthday, all medical insurance policy numbers, emergency telephone numbers, and all current medications. I keep a record of all his medications (the strength, dosage, and how many times a day or hour they are to be taken); his allergies; and his primary care physician and consultants, together with their phone numbers on my computer.
It's important to write down a short description of your loved one's current physical and mental capabilities. Is he or she forgetful or having difficulty hearing or moving?
My husband lost his eyesight as a result of glaucoma, so I always put a large sign on the wall above his hospital bed saying he is blind. I ask nurses, physicians, and other health care staff who come into his room to care for him to first tell him their name and what they're going to be doing. This usually works fine, but it still amazes me when they feel it necessary to speak to him in a loud voice.
This all may seem like a lot to do, but if you're prepared ahead of
time, it'll be well worth the effort. I speak from experience.
© 2002, Real Living with Multiple Sclerosis