One of the things that I learned early in caring for Boo was the importance of having a home health notebook. In an emergency, having everything written down and at your finger tips eliminates unnecessary panic. Besides, Boo's notebook helps me be more organized and accountable---very important since I am his sole caregiver.
Determining just what was really necessary in Boo's notebook I learned by trial and error. Several of his doctors' suggested things that I should include and one of his home health nurses made invaluable suggestions. The layout of this particular notebook seems to be most appropriate for relatives caring for their parents or spouse. Of course, it can be adapted to other situations.
Much personal information is contained in this notebook. Please use discretion when sharing this information. It is not meant to be on display to everyone who comes into your home.
Part One: Basic Personal Information
In this section, I list Boo's full name, address ,phone number, religion, primary care physician and allergies. I also include a notarized copy of his medical power of attorney and a pocket with copies of his Medicare and insurance cards. This is typically information needed when registering at a hospital.
Part Two: Medical History
I include two medical histories in this section. The first is one page and lists height, weight, allergies, primary care physician, current prescription medications including dosage and concise list of health problems and date diagnosed. This one page medical history is generally exactly what rescue personnel need. They seldom have time for a detailed history. This one provides the essentials and is easily read.
The second medical history that I include is far more detailed. I include all the information given on the one page history, although I elaborate on some of the items. With his prescription drugs, I include when they were begun and any changes in the past two years---whether it be dosage changes or discontinued drugs. In the listing of health problems, I include where the diagnosis was made and briefly how it has affected him. I also include all immunizations, types of questions he finds easiest to answer, types of behavior that are typical of him in hospital situations and ways to make it easier for him. This medical history is the one that I refer to when giving information to hospital doctors, new doctors and when filling out medical history forms.
Part Three: Contact Information for Medical Professionals
Here I include all physicians that Boo is currently seeing, his preferred pharmacy and a second choice, his preferred home health agency, his preferred hospital and a second choice, insurance agents and social workers. For each entry, I include the name of the practice, mailing address, email, website, phone number, fax number and driving directions. I usually include the name of a contact person at each office as well. When filling out new patient forms at doctor's offices and detailed information at the hospital, this information is typically needed.
Part Four: Prescription Drugs
I list all Boo's prescription drugs, dosages and times I usually give them. I also include the prescription number and the date the prescription expires. The prescription number is useful when calling prescriptions into the pharmacy. The expiration date is really useful when visiting the doctor. Just remind the doctor and get refills either called in or given to you to eliminate another call or visit. All nonprescription medication should be listed as well. This includes vitamins, herbal supplements, stool softeners, fever reducers, etc.
Remember all the drug information sheets you're given each time you have a prescription filled? This is the perfect place to store one copy of each of them. The ones Boo receives monthly are on 8 ½ x 11 inch pages. I just punch holes and insert one set of pages in this section.
Part Five: Daily Record Pages
This will likely be the largest section of your notebook and the one you refer to most often. Because each person's needs are different, this section will vary greatly from person to person. We asked for input from Boo's home health nurse and his primary care doctor in determining what was necessary to record for him.
On Boo's weekly page, I record his blood pressure and blood glucose levels. I only have room for one recording of each because that's all that usually needs to be recorded for him. With his blood pressure, I include the time taken, which arm I used, whether he was sitting or lying and his pulse. With his blood glucose, I include the time taken and when he last ate. If I need to record more than one of each reading, I place a star beside that day and highlight it. I record further information on his daily pages.
On Boo's daily pages, I record briefly the type and amount of exercise he does and anything unusual---confused episodes, lack of appetite, etc. I also include additional blood pressure and glucose readings if he is sick or if they are higher or lower than normal.
Other people may need to record more frequent blood pressure and glucose readings or other things altogether. This is one area that you will need to consult your doctor and use common sense.
Part Six: Home Protocol Pages
This section has really been useful when Boo has minor problems and in determining when to call about more serious problems. If your physician does not provide protocol pages, make your own based on his or her advice. When Boo has a fever, I can refer to this section to determine which over the counter medications to give him that won't interfere with his prescription medications. I also have information about when the doctor wants to be notified about his fever.
In Boo's notebook, I have protocol pages for fevers, colds, flu, high blood pressure, high and low blood glucose levels and possible stroke and heart attack. For each of these I include when to call the physician or take him to the hospital, what he should have to eat or drink, what over the counter medications he can have and other pertinent information.
Part Seven: Useful Websites and Books
I list topics and the websites I've found helpful. Of course this is useful at home. Surprisingly, I've also found this useful when Boo was hospitalized. It's hard to ask intelligent questions about a new medical issue if I don't understand the basics about it. Many hospitalists here can and will recommend websites when asked. I don't think there's such a thing as too much information.
Part Eight: Warranties and Information Booklets
I punched holes in large envelopes and put the warranty and information booklets that came with Boo's walker, blood pressure cuff, glucometer and other medical equipment. This section has been useful when others cared for Boo and needed further information on how to use the blood pressure cuff. It has also been useful when our thermometer died. I did get another immediately, but I contacted the company and was sent a coupon to get another free. Another time, Boo's cardiologist asked what brand blood pressure cuff we used. Because I had that information right there, he was able to find that the particular cuff we used had been recalled and he arranged for the company to send another one.
Part Nine: Caregiver Information
Even if you stay with your spouse or parent, there will be times that you can't be there. At times like that, this section will be invaluable. I list where medications and first aid supplies are located, types of behavior that normal for Boo, ways to communicate with him when he's stressed, how to set up his meals, where his clothes are located, etc. I also list my phone number, where I will be and the phone number there. In case of emergency, include directions to your home from the major intersections nearby and a neighbor's phone number.
Part Ten: QUESTIONS
This section and an ink pen will be invaluable when you visit the doctor. Day by day, list all the questions that come to mind about your parent or spouse's care. I realized after Boo's second stroke that I had to ask questions. That is a major part of my responsibility as his caregiver. He can't ask pertinent questions about his care, especially when he feels stressed. So, that's my job. I simply won't remember everything I need to ask if I depend solely on my mind. I have to write my questions down...and I have to write the answers down. No question is too trivial or silly to ask. Most doctors are thrilled that someone is interested enough to ask questions. If you find that your doctor shies away from answering questions or routinely doesn't have time to answer them, consider finding a different doctor. You are your spouse or parent's advocate. Speak up. Ask questions.
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