I recently self-published a book called "Tough Care." It's the story of how my wife Celia and I struggled through a four-year period during which she was stricken by serious illnesses. Celia was a young-at-heart and vivacious woman, former soldier, wife and mother. We were married 39 years. Celia now rests proudly and peacefully in Arlington National Cemetery where our sons and I have interred her with full military honors. During this period, to maintain my own sanity, I kept a journal. I decided to turn the observations, experiences and lessons into a book because I believe it may help others facing similar situations.
In my first post I discussed the necessity of getting help when you are the primary caregiver for a loved one. Today's piece looks at communicating with medical professionals.
Clearly communicating with doctors is enormously important when you are a caregiver. I really blew this one. Celia and I were both from the generation raised to see medical doctors as all-knowing and always correct. To question a doctor on any medical matter would have been anathema to Celia or me. I never have (until recently) questioned anything any doctor said to me. I sat with doctors and with Celia on what may well have been a hundred occasions. They all said things that neither she nor I fully understood.
Doctors are carrying huge patient loads and they are forced to practice medicine these days in a very litigious environment. Every word they say and action they take exposes them to legal attack. Consequently, they tend to communicate in a rather guarded way. Internists have a tendency to narrowly focus on statistics. They get blood panels done on a patient and then prescribe medications and/or remedial actions on the part of the patient. I saw this cycle repeated countless times for Celia over those years. All the while she was losing mental, physical and emotional abilities at a rapid pace. At the end, her blood panels were looking spiffy though.
Specialists limit themselves to their specialties. You should question anything that any doctor says that you do not fully understand. As an example, dementia has more than one form. Which form are you dealing with? How does one best deal with it? Ischemic disease described on a radiologist's interpretive report does not really inform the casual reader very fully about the prognosis or time frame associated with it.
On the other hand, I learned that nurses are the backbone of medical care and came to hold them in great esteem. In the military services, the first thing a young officer learns is that the non-commissioned officers (NCO's) are the backbone of military leadership. This has been proven over millennia. Commissioned officers may be the more educated and cultured leaders, but the NCO's actually get things done.
The same is true of nurses in relation to physicians. It was a nurse who first informed me that Celia was approaching death. It was nurses who then cared for her every day until the day she died. Nurses visited us every day, sometimes several times per day. A nurse judged what medications would best provide the palliative care Celia so desperately needed. The nurses occasionally consulted with a physician via phone to keep the dispensing of powerful narcotics in compliance with the law.
In the case of home care (as distinct from a hospital in-patient stay) one nurse is assigned to you. She comes to your home and introduces herself. She establishes a clear "chain of command" with her at the top. She is called Case Manager/Nurse. She is always a specially trained RN. Under her supervision, others come at various times. These are Certified Nursing Assistants (CNA's). They provide day-to-day assistance such as bathing, grooming, rolling the patient into prescribed positions for maximum comfort, etc. Therapists also augment the nursing care as appropriate.
Not once did I see a physician question or override any nurse's judgment. Whether it was intentional or not, all of Celia's nurses and nurse's aides were female. They told me what to do to alleviate her pain and I did exactly as they said. I sought from them advice based on their experiences to help me stay in control of any major decisions.
They all used better bed-side manner than I ever saw from any physician of any gender. A person's end needs to be a gentle, respectful time. The nurses who cared for her from the first day of home nursing through to the morning of her death were gentle, kind and caring. They could see her silent pain much better than I could.
In short, when dealing with doctors, be prepared to ask questions. When dealing with nurses, be prepared to listen, and find a way to express your gratitude. The first three copies I received of my book went to the three nursing teams who supported us, with a "thank you" written inside.
My advice to everyone is to ask questions (as many questions as it takes to get the right answers), request copies of all of your tests for your own records, and verify every diagnosis code (available in a Google search) on your reports. Sometimes, it doesn't hurt to remind your doctors and nurses that YOU are paying the bill -- they aren't doing you a favor!