“Caregiver” Sometimes Means just Being There

As we live our lives we are apt to experience a multitude of “coming of age” moments. One of those moments is when we realize that an elder in our family circle, who was previously known as the “care giver”, now needs us to care for them in a way that we are unaccustomed. Some people seem to grow old and infirm inordinately quickly; perhaps from too many heartaches and disappointments. Life isn’t easy but I believe that we are here to help each other ease the path. There oftentimes is no “START” sign that alerts us to the fact that a family member or friend now needs our help navigating their health issues.

When I moved to California my mom would visit from the East coast with her oversized luggage in tow. Seriously, the airlines marked it with a “HEAVY” sticker every time because she would also pack her favorite snacks. On one occasion while I was picking her up at Oakland airport, I was unable to lift her big red bag into my Jeep Wrangler. I left her at the curb to get the car but I had to come back for her help. In retrospect she was having trouble walking due to leg pain but she never said a word about that. She told me to just go ahead and put the bag in the Jeep myself and I started laughing because it was HUGE. Normally, I can handle most physical tasks, but I was literally afraid of busting a gut or something. Eventually, we hoisted the bag into the car together and laughed all the way home. My mother never told me when she was hurting or that she needed help and I therefore assumed she was doing just fine. I had no reason to suspect that she wasn’t the same strong woman that I had known all my life. When she went to the hospital in Pittsburgh for unclear reasons, but related to abdominal pain, I assumed she would tolerate the event with minimal difficulty. Devastatingly, my mom died unexpectedly during that hospitalization. My biggest regret is that I wasn’t there to support her when she needed me.

Older patients may get better medical care when they have family with them at their doctor visits or when they are in the hospital. Understandably, this isn’t always possible due to social, economic and logistic reasons; however, the reason they do get better care when accompanied by someone who knows and cares for them is multifactorial.

The art of medicine and the medical practice model have changed vastly over the last 50 years. As a result, the amount of time that a doctor has to spend with her patients and conceptualize an idea of the problem and issues to focus on is reduced to a fraction of what it should be. If a patient comes to the office alone, we have only the information that they can give us to help formulate a diagnosis and treatment plan. Not infrequently, patients can’t remember specific facts or incidents surrounding the issues for which they are seeking help. They may be overwhelmed by the medical experience or may have impairments with memory or thought processes. Patients may even be too embarrassed to mention issues that are significant and crucial for the doctor to know. Also, due to time restrictions with each patient, we physicians are losing the ability to develop trusting relationships with the people for whom we are assuming responsibility. Patients are reticent to heed the advice of a doctor they don’t know well or if they don’t understand the information that is being given to them.

In my experience, If a close relative or friend accompanies a patient, I have an opportunity to see a more 3 dimensional view of that person’s medical issues and how they are affecting her life and to what degree. Even if that support person is only present for the initial office visit, it is helpful to have a familiar point person who can be contacted if I have future questions or concerns. Also, my treatment of a particular pain issue may involve medications or therapies that an older patient is unacquainted with. I do my best to teach and explain the rationale behind all of my decisions and treatment plans, but it is frequently much easier if I can simultaneously relay the information to the support person who may have a better understanding of my thoughts as well as the ability to reiterate the recommendations after the office visit to the patient.

All of the aspects of the complex medical system we have today along with the multitude of health issues that people are dealing with make it more important than ever that we take the time, whenever possible, to be there for our friends and family. Sometimes we might have to insist to just be an “extra ear” to accompany our family member but most likely the offer will come as a relief in knowing that they are not alone.