It’s been more than 18 months since I posted this article. Caregiving is a fluid enterprise with folks coming into it and going out. The information remains valid for those of you who are new to caregiving, so I’ve decided to post it again.
This morning I got a call from a dear friend who told me her 44-year-old daughter has just been diagnosed with colon cancer. In all her anguish, the question that kept coming through was “What do I need to know, right now?”
No matter what the disease or injury, I think there are a few immediate steps that all caregivers need to take, the “first five steps” of your caregiving journey.
1) Always have a second person at every medical appointment. There is so much information given out at a time when the patient’s brain is numb from hearing the shocking diagnosis. A second person is needed to help track the information, ask questions and prompt questions from the patient.
2) This one is the most difficult, but in some ways it’s the most important: always get a second opinion. Medicine is art as well as science. There are always multiple approaches to solving a particular problem. The first doctor may be the best in his or her field, but it’s worth the extra time and effort to have that opinion and treatment plan confirmed by a second doctor. This step is difficult because once the shock of the dignosis or injury-causing accident has worn off, there’s a rush to get starated in treamtnet. Please, please, please take the extra time for that second opinion.
3) Talk about it. The diagnosis of a life-threatening disease has an enormous emotional impact on a family, especially the children. My friend’s grandkids range in age from 10 to 17. It’s necessary for patients to have a positive outlook. However, that focus on only the positive sometimes prevents everyone around them from sharing their true feelings, especially the fear and anxiety.
4) Now is the time to start a medical journal for your patient. Whether you use mine (http://www.blueprintforcaregiving.com) or create one of your own, have a single notebook or file where all the information is organized and kept. Having all the medical information in one place is a great stress-reducer.
5) Now is the time to actively engage in your own self-care. Caregiving is a dual focus enterprise—focus on the patient, and on the caregiver’s own well-being, too. Make space and time to care for yourself as well—exercise, get the sleep you need, eat well, find the support you need. And don’t neglect your funny bone, or your patient’s. Play, sing, dance, laugh. That lightness of spirit actually is physically good for both of you.
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