Each of us goes through a stage in which we are dependent upon our parents. In the circle of life, there may come a time during which our parents may need our help and advice. This transition can be difficult for both parent and child. Just as we felt that we were grown up to make our own decisions, parents feel that they have made decisions all of their lives, and don't desire to lose their autonomy. Just as they had problems as we spread our wings, allowing us to grow safely, we must also not encroach too much in their lives.
The transition is recognized well by doctors who find themselves in a quandary as to what information can or cannot be given to the family. As long as a patient is competent to make his or her own decisions, and desires to keep medical information private, the doctor must respect this instruction. This doesn't mean that the doctor cannot listen to what the family may say, or answer their phone calls, but the doctor may not be able to give medical information or advice to the family. Even though you may not feel that you are getting answers though, such information given to the doctor may be a great help to the patient. Every year I receive several family calls that aid me in defining a problem of which I was unaware. These calls may be about episodes of chest pain, shortness of breath, loss of consciousness, rage reactions, alcoholism or drug use that patients may have denied while in the office for whatever reason. These insights for the doctor on occasion can even save a life. *
Remember that the parent may have different life goals than the child, even if the child is an adult. To you, living an extra 10 or 20 years is quite important. To an 80 year old, living with frailty diminishing capacities and lost friends, things may look quite different. I cannot count the times that I have been told that a problem about which I was concerned, was not on the radar as far as the patient was concerned. Sometimes the patient has been right. Indeed, some of the things that we accept as "standard of care" may make no sense at a certain age.
An example: annual mammogram, or screening colonoscopy. One 85 year old patient got it right "how many extra days will I get in my 90's isn't worth going through that again". Her daughter wasn't pleased, but the patient made her own decision. We went over the data, and she was right. Since that time, the American College of Physicians has come to the same conclusion. Fortunately for all, the discussion involved the daughter as well with the patient's approval. This is the key important point. The doctor can discuss these issues with the family only if the patient approves. So, in order to facilitate care of a parent, I would make the following rules:
1. Obtain the permission from your parent to permit the doctor to give information to you.
2. If there are multiple concerned members of the family identify someone who will speak for the family to communicate with the doctor. Doctors may know something about the family, but they generally don't know everyone's name, especially those of daughters and grandchildren (they often have different last names).
3. Try to be brief and objective about what you report. The doctor answering your call wants to help. But there is little to do for angry argument over childcare, or who said what, if the problem is that Dad keeps passing out and it affects childcare.
4. State your concerns. Often the doctor can answer them quickly. The doctor cannot be expected to answer questions that you didn't ask. "Is this to be expected, or a sign of worsening? What is the prognosis? Is there something that we should or could be doing?" are questions that will draw a response. Sometimes it helps to write questions out before making the call.
5. Know the medicine names and doses. If you are asking a question about medicines, go over the medicines and the doses with your parents first. It is not easy to go over a list that includes "the one that Dr. Smith gave her and the eye drops that someone else gave her."
6. If there was an event, the date and time of the event is helpful, the duration of the event is also very important. "Dad keeps falling" is not the same as "Dad fell twice and wouldn't wake up for twenty minutes".
Connect with experts and other Caregivers on our partner site CareConnection.
Create a private CareCentral webpage to keep in touch with friends, family members and loved ones during important events in your life.
Learn more about Dementia and Alzheimer's Disease on our partner site OurAlzheimer's.com.