Caregiver To Doctor: Come Live My Life For A Day

There has been a theme in many conversations I am having with caregivers these days.  There is great frustration that medical professionals don’t understand the impact of any new care or medication on the patient and life in the home.  Changes in  routine are complicated whether the outcome will be positive or negative.  The amount of energy to implement and the ramifications of change  is a major stressor.  It certainly is the unknown.

Medical professionals seem to disconnect in understanding that the real work starts after the patient and caregiver leaves the office.  They understand the medical side and expect because it is medically necessary, it will be done.  There is a chasm between the giving of information and  the reality of action.  Caregivers say to me, my doctor doesn’t understand what it means to make those changes. They will ask me, is there an option or can I do it slowly?  Will my provider get angry if I can’t do a certain way?  What if I have a question?

Here are some real stories as told to me, of medical professional and patient/caregiver disconnect.

One of my clients is a 25 year old with Irritable Bowel Syndrome.  There has been multiple surgeries and problems for the last three years.   A new round of unrelenting symptoms with pain and weight loss had started up.   The caregiver is a great advocate and support and after the last diagnostic test, the doctor came out to talk.  He said “Good News, we found the source and can schedule surgery in a few months.”  The caregiver told me it was such a relief to even see the doctor that the no extra questions were asked.

My client went home and the symptoms began to rage.  The caregiver called me in tears and kept saying we need the surgery NOW.  I said I would get in touch with the doctor the next day.  A few minutes later I got a text from the caregiver that summed it all up:              “caregiver tip 101…don’t freeze when your doctor actually is doing his job and thank him for pretending like he really cares or understands….ask him what the next steps are and how he is going to make sure the patient gets what he needs done.”

Consequently, it has been a two week drama working on getting surgery scheduled.  The point here is, my client continues to deteriorate which occurred in the past and ended up in the ER with need for surgery.  Life is hard right now with weight loss, decreased sleep, constant pain and nausea.  Plus my client continues to work from home!

Another caregiver told me two stories.

Years ago, her son was on an asthma medication that was making him very hyperactive and hard to control.  She went to the doctor and asked for a different medication.  He laughed at her and said he needs to stay on it.  She said to him, OK then, you take him home for the weekend because this is too much.  The doctor changed the medication and her son calmed down.

We originally got started on the topic because she had taken her husband to the PCP.  The PCP had done some lab work and wanted to recheck it in the office in three days.  The caregiver said can’t do it (she had other things scheduled)  PCP replied , you must it is medically necessary.  She said, sorry, it will have to be the following day.  He kept badgering her until she said stop and NO.  She started to give him an explanation and then stopped herself because she realized, it was none of his business.  (Bottom line, the test was not medically necessary that day).  He didn’t understand her life.

This isn’t about compassion but rather taking a brief moment to visualize the impact of what you are asking the patient and caregiver to do.  It also entails taking the time to understand the home situation and assisting the caregiver in creating a workable balance.  Having been a provider, I know how busy I would get.  It didn’t always register what life was like for some of my patients and caregivers.  I don’t have answers to the gap except if medical providers  need to ask the right questions and listen carefully to the answers to gain further insight into patients lives.