FROM KEVIN

I used to know an older woman on the mainland who had been institutionalized for tuberculosis when she was younger but was able to lead a fairly normal life after her discharge from the TB sanitarium.

As she got older, however, she began to suffer from a wide range of health problems (or existing ones became worse), which made it necessary for her to see her primary care physician, as well as a variety of specialists.

Throughout her life, this woman had had a number of chronic diseases, hospitalizations and surgeries. As is common with older adults, she was also taking quite a few medications.

One day she told me that she has seen so many doctors over the years, and they always ask similar questions about her health history, so she decided to create a "healthcare resume."

"What's a healthcare resume?" I asked. I thought resumes were just for jobs.

She was sitting at her work desk and asked if I'd like to see one. Sure, I would.

She removed a file folder from a desk drawer, and took out some sheet of papers, stapled together. "It's long," she said.

Her so-called "healthcare resume" turned out to be an updated healthcare history for herself. She always took it to the doctor with her, especially when seeing a new doctor or care provider (or if she had to go to the hospital), and referred to her resume when filling out intake forms and answering questions on paper or in person. She said that without her resume she wouldn't remember exactly when she had a certain procedure done, who did it, why and where she had it done, what were the results and so forth. And she kept it updated.

This woman has since passed away, but I learned so many good tips from her about how an elder can help manage her own care and keep on top of things. If an elder is not able to create a healthcare resume by herself, however, a family caregiver can help.

Longtime caregivers probably already have something like a healthcare resume for  their care recipients. For those of you new to caregiving or who expect to be caregivers in the future, the following information may be helpful. We'll use "Mom" for this case study, but it could be any elder family member or friend.

Let's say one afternoon Mom finishes eating lunch and about a half hour later complains of severe abdominal pain, starts throwing up and appears disoriented, which is not normal for her. You call her primary care physician, and he says she should go to the emergency room right away.

When someone needs to go to the emergency room, you don't want to be looking around in too many places for things to take. You should just go, whether by ambulance or personal vehicle. Thus what should always have ready to go is 1) insurance information (e.g., Medicare and supplemental or private insurance cards); 2) updated and current list of medications (if in a pinch, just take the medications in a bag to the hospital and let the doctor or nurse look at the medications in the bag); and 3) an UPDATED healthcare resume.

When you get to the emergency room, your Mom will be asked questions if she is able to answer them. A family member or caregiver can help answer them, especially if Mom is confused or in pain. Depending on the nature and severity of your Mom's condition, this scenario may play out differently. But in general, a nurse or doctor (or both) will want to know what brought Mom into the emergency room. Be prepared to explain the circumstances that led to the emergency room visit as clearly and accurately as possible. A good "reporter" (i.e., someone who can report the facts, provide details, and share observations) can be a valuable patient advocate.

To treat a patient effectively, healthcare providers will seek out more information. That information, in addition to the emergency room exam and various tests, can help healthcare providers with treatment options and decisions.  They will want to know what medications a patient is taking. Your Mom's medications list should list the exact name of the medication and the dosage information (e.g., Brand X, 50 mg tablet, three times a day orally with meals). Include prescription medications on the list as well as aspirin, vitamins, supplements, etc. If you know how long she's been taking the meds or supplements, that might be useful too. It is not that helpful to say, "I think she takes something for high blood pressure and for her cholesterol, but I'm not sure what. She takes a lot of medications."

It is important to keep the medication list updated. Older people often have a change in medications or in dosages. Date your medications list so that you know when you last updated it. Every time there is a change, change it on the paper (or on the computer document if you use a computer). Do you know what the medications are for -- what they do and what they are meant to treat? For example, is Brand X for lowering high blood pressure? Will the medication increase urination? Read the information that comes with the medication or do further reading using credible sources. This is easier said than done because the documentation can be difficult to read, but it is important to read the fine details such as possible side effects to look for, contraindications, risk factors, warnings about persons who shouldn't take the medication, and so forth. If you have questions or concerns, discuss them with the doctor or pharmacist.

Then there are questions that the healthcare resume will help answer. What kinds of medical problems does Mom currently have? What kinds of problems has she had in the past?

Who are Mom's doctors?

Has Mom been hospitalized before? When and for what? Has Mom had surgeries before?

The more you visit doctors and hospitals, the more you will have to answer these kinds of questions, both on paper and in person. Every time you see a new doctor, there will be a new healthcare questionnaire. Every time you go to the hospital, there will be a healthcare questionnaire. Doctors and nurses will ask questions. Unless you have a photographic memory, it is almost impossible to remember every detail unless you have it written down somewhere.

If you're talking to a surgeon who wants to know whether your mother has ever had surgery before, for example, your answer (without your mother's healthcare resume) might sound something like this:

"Yes, I know she had some kind of heart operation years ago, but I'm not sure what it was. I think it had to do with cleaning out the arteries or something. I don't remember the exact procedure or where it was done or who performed it. I don't think she had a stent put in. But maybe she did."

As opposed to: "On January 30, 1995, she had a (specific name of procedure) done at St. Francis Hospital by Dr. John Doe. She had no complications after surgery and has had follow-up appoints with ..."

Sometimes finding out this information will take some effort to research. Other times a procedure may have been done so long ago, your information may not be too exact. Just do your best. The best time to prepare the healthcare resume is when you  and the person you're caring for are not in a crisis mode.

Here is some basic information to gather, in case you need it:

All allergies, if any.
Operations (what, when, by whom, why).
Past hospitalizations.
Updated list of medications. (It might also be useful to know about past meds and why the care recipient is no longer taking them.)
Problems with anesthesia?
Tobacco user? (How much?)
Consumes alcohol? (How much?)
Dental problems? Dentures?
Bleeding or bruising problems?
On blood thinners?
Currently sick? Have a cold or recovering from one?
History of blood clots? Epilepsy? Lung disease? Asthma? Cancer? Stroke? Heart problems? Liver problems? Kidney or urinary problems? Bowel problems? Emotional problems? Dizzy spells or fainting? Stomach problems?

In general, it's good to keep a healthcare notebook to use as a daily journal, informal medical notes, question reminder book (e.g., "Ask doctor about ...), etc. If you're a caregiver for someone who goes to the doctor a lot, you will accumulate a lot of paperwork. Keeping the papers organized will help you feel more in control. I've seen caregivers who maintain their care recipient's paperwork with the efficiency of certified public account. It may not be easy to keep everything organized, but it pays off.

"Organization is liberation." That is something the woman who introduced me to the healthcare resume used to say. It's not always possible to achieve with so many responsibilities competing for time and attention, but it's an ideal to strive for. I'm guilty of throwing everything in a box at times to sort out "later," although I do try to get to it.

By the way, the healthcare resume is not only for elders who are being assisted by their family caregivers. I think everyone should have one, including the caregiver. You never know when you're going to need medical treatment, and having this information close at hand will help when your healthcare providers start asking questions.

Many elders can create their own healthcare resume and medications list. Others can do it on their own with some assistance. And some need someone else to do it for them.

If you're helping someone, remember that personal health information is private. Respecting a person's dignity requires protecting that privacy, except as needed to help that person seek and receive needed treatment.

Thanks to everyone who has been sharing tips for caregivers in the comments section. Keep them coming!

Tags: aging, caregiving, multigenerational families, older adults

This entry was posted on Wednesday, June 24th, 2009 at 6:21 pm and is filed under Caring for Hawaii's Elders. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.