Thursday, May 21, 2009

Keep a Care Log

We're talking about gathering information about your parent's status and as you learn more, you'll need to record what you've discovered. A place to begin is a Care Log.

The Care Log is simply a day-by-day record of the care your parent is receiving. Each entry marks an event in care: a discussion with a physician, medications prescribed, medical terms, an accident, diagnoses, decisions made, options offered. Start the Log as soon as you become concerned about your parent's health. Record what you know at the time and any questions you need to ask. My own notes were hurried and telegraphic as I listened and spoke with people on Mom's care team, but I later filled in the blanks as I learned more. This log was helpful in several ways:

•As my mother's illness progressed and she moved from hospital to rehabilitation to nursing care, healthcare personnel changed with those moves. I found that new physicians rarely studied her chart in detail before speaking with me. They asked me (I was astounded!) when certain procedures had taken place, what medications she was taking, what was the last medical approach. Only after this interview, would they consult the chart for details.
•Each new facility needed dates and physicians' names. Without the log, I would have been lost. With the log, I could easily find pertinent dates, relate details of discussions and maintain continuity in what care was being provided.
•The log was the main tool I used for sharing my mother's status and details of care with other members of the care team, with family, and with friends.

IMPORTANT: If you become the primary caregiver, this log must be portable--part of your daily planner, PalmPilot or a separeate notebook. If it's electronic, have a backup! My Mom's Care Log was a plain steno notebook. I filled one and part of another over my 5 years of caregiving.

When recording conversations with health professionals, take time to do the following:
· Note the date, time, the person with whom you're speaking, their position, the correct spelling of their name, with which institution they are affiliated (hospital, nursing home, rehabilitation center, etc.)
. Tell the speaker that you are taking notes and may need him or her to repeat things for you
· Ask the speaker to spell and explain any term with which you are unfamiliar
· Even if the speaker uses understandable English when describing your parent’s condition, ask for the medical term for the diagnosis or condition. If you wish to research the subject later, you will need these terms.
· Immediately after the conversation ends, read over your notes and fill in any details, expand on your shorthand, add your impressions. Anything that will clarify the situation and jog your memory in the future. You may be consulting this log months later.
· Make notes to get more information if you need it
. Add any new person to your Contact List (we'll talk about this resource in a later post)

Here's a sample of notes I recorded when my mother first entered the hospital.

10/28 8:30am
Dr. S T E V E N S, Jackson [Hospital]
Cat Scan--
Stroke? She's incoherent (didn't know what day it was)
Doesn't know, memory lost from yesterday
Blood Sugar Low, BUN low (Liver function)
CNS: [Central Nervous System] Lumbar Puncture for neural infection
Large lump on left breast, mammogram to be taken
Neurology needed
Thursday we will know more

No heart attack!
Kidney function back to normal
Monday, biopsy on breast lump
No stroke: encephaletic pressure in the head; blocked ventricles?!
MRI for blockage
No neurologist [here]--U Pitt [she will need to be sent to Pittsburgh]
Breast Surgeon: S I R I P O N G
Spinal tap
Bone scan for cancer
Chest/ Upper, Lower GI

Remember that caregiving can last for months or years. But my caregiving experience taught me that whenever I now head for the hospital, doctor's office, clinic, I take a notebook with me, ready to write down what I learn. It's a good practice for your parent; it's a good practice for you.

Blessings on your caregiving today!

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