The Family Care Book
One book for everything about your loved one's care
The book holds the medicines, the daily notes, the warning signs, the appointments, and the names of everyone who is helping. It is written in plain words, in English and Spanish, with big print and room to write.
What a good care home does, a family can do at home
This year I have been visiting a family member in a care home, and I have watched how the staff keep track of everything. Every nurse initials the medicine chart. Every shift leaves a short note for the next one. There is a calendar on the wall and a page about who each person is and what they enjoy. None of it needs a phone. It works because everyone can see it and everyone writes in it.
Most families at home have none of that. The book gives them the same simple routines.
Eight tabs
- About me
Who your loved one is, in their own words: what they like to be called, the language they speak, how they understand best, what makes a good day, and what worries them. Every new nurse, aide or visitor reads this page first.
- People
Family, neighbors, the aide, the doctors and the pharmacy, with phone numbers. Who has a key, and who to call first.
- Medicines
Every medicine, what it's for, when to take it, and what it looks like. Brand and generic names side by side, so nothing gets taken twice. A box to initial for each dose, like the charts nurses use.
- Daily notes
One line a day from whoever is there: sleep, food, a walk, mood, and anything new. If the doctor asked for a daily weight or blood pressure, it goes here, with the number to call right beside it.
- Warning signs
The hospital's warning signs, copied in plain words and sorted into three groups: what is normal, when to call the clinic today, and when to call 911.
- Calendar
Appointments, rides and refills for the month, with room to write who is going along.
- Helping hands
A sign-up page for the week: rides, meals, walks, visits, and someone to stay. When a day is empty, everyone can see it.
- Papers
A pocket for discharge papers and test results, a list of health plans and what they cover, where the legal papers are kept, and a page of questions for the next visit.
Inside the front cover there is an emergency card with allergies, main health problems and who to call, for an ambulance crew or anyone who needs it fast.
Pages from Teresa's book
These examples are filled in by an invented family. Your own pages use your doctor's instructions and your pharmacist's medicine list.
About mePlease read this page first
- Please call me
- Tere
- I speak
- Spanish at home. English is fine if you talk slowly.
- I understand best when
- you write it down for me, in big letters
- A good day for me
- coffee on the porch, my novela at 7, a call from Miguel
- What worries me
- being a bother. Who feeds Luna, my cat
- Please remember
- knock before you come in
MedicinesInitial the box each time a dose is taken
| Medicine | Morning | Evening | Bedtime |
|---|---|---|---|
| Furosemide 40 mgWater pill. Small, white, round. | A | ||
| Metoprolol succinate 25 mgHeart rate. White, oval. | A | ||
| Empagliflozin 10 mgHeart and kidneys. Yellow, oval. | A | ||
| Lisinopril 5 mgBlood pressure. Pink, round. | |||
| Atorvastatin 40 mgCholesterol. White, round, larger. |
Furosemide is the same medicine as the old LASIX bottle. Don't take both! Old bottle is in the bag for the pharmacist.
Daily notesOne line a day, from whoever is here
Weigh every morning, after the bathroom and before breakfast. Same scale, same clothes.
Call the heart clinic if: up 3 lb in a day, or 5 lb in a week. 555-0142
| Day | Weight | Notes | Who |
|---|---|---|---|
| Thu | 141.5 | Home at 2. Tired but happy to be home. Soup for dinner. | Ana |
| Fri | 141 | Slept better. Walked to the mailbox with me. | Ana |
| Sat | 141.5 | Lunch on the porch. Laughing again. | Gloria |
| Sun | 144.5 | Up 3 lb! Ankles puffy. Called clinic 9:10. Nurse raised water pill for 2 days. | Ana |
| Mon | 142.5 | Ankles better. Clinic called to check on her. | Ana |
Warning signsCopied from her discharge papers, in plain words
Every day
Breathing is normal for her. Weight is steady. No new swelling.
Keep taking medicines. Weigh every morning.
Call the heart clinic today
Weight up 3 lb in a day, or 5 lb in a week. More swelling in feet or legs. More short of breath, or needs more pillows to sleep. Dizzy.
Clinic 555-0142. After 5 pm 555-0199
Call 911
Can't catch her breath, even sitting still. Chest pain that doesn't go away. Confused or hard to wake up. Fainted.
A copy that stays with your family
Paper can get lost, and people move: to a daughter's house, to rehab, to a new doctor. So once a week, take a photo of each page that changed. Keep the photos together in one folder that belongs to your family, on a phone, a computer or a USB stick. A helper can show you how.
The book has a letter you can send to ask a doctor's office for copies of medical records. Over time, that folder becomes a full record of their care that your family keeps.
We are also building free software that keeps this folder organized and lets your family decide who can see what. It will use the same tabs as the book.
How to get one
In a pilot
Families in our pilot get a printed book from their helper, in English or Spanish.
Print at home
The pages will be ready to print at home or at the library. Some are ready now.
See what's readyFor the families you serve
Hospitals, clinics and community groups can ask us about printed books for their families.
For hospitals