If you have been following this series, you know that Peggy has shown symptoms of Alzheimer’s since her mid to late 60’s. She is now in her early 80’s. In 2001, she was diagnosed as most likely having Alzheimer’s.  At least at the time, the only conclusive diagnosis for Alzheimer’s was through autopsy.  So, when everything else has been pretty well ruled out, you are left with Alzheimer’s as the best guess.

I recall visits to the doctor in the 2005 time period where most of the time was spent with assistants and only a few minutes with the doctor.  These were generally frustrating visits.  We would arrive with a list of questions and basically have only a minimal chance of interacting with the doctor.  We were informed Medicare limits the amount of time that can be spent on each patient. Even worse, there were too many doctors involved, resulting in some challenges when it came to medications being prescribed. 

We were relying pretty heavily on support groups for information at that time. At least we could hear from other caregivers what they had experienced and use that information to help guide our thinking and approach to care.

Then, for various reasons, we took Peggy to a medical center under the auspices of a medical school.  One of the first things we noticed is that the doctors took the time to understand how things were going with Peggy and actually welcomed the fact we showed up with a list of questions to ask them.  We commented that we were thankful for the time they were taking and the patience they expressed toward Peggy. They believe that taking the time to discuss options with the caregivers and explaining what might occur will actually result in fewer trips to the doctor, more independence, less stress to the patient and caregivers, and possibly less overall cost for medical support.

For the past four years we have had one or two visits per year, greatly minimizing the stress placed on Peggy.  They typically last about an hour and at the end of the session we feel in control.  For Peggy, this means we understand issues regarding weaning her off of a particular medication or adjusting the dose she is receiving based on our observations of how she is responding.  In addition, the doctors we have interacted with have provided their email addresses and been very responsive to the occasional questions that have arisen.  I don’t know how the overall study is progressing from the doctor’s perspective. But, from our perspective, it is a success.

The doctors also have been more compassionate and less rigid in their examinations than we experienced several years ago.  Peggy gets scared and will scream when an automatic blood pressure cuff squeezes her arm.  She doesn’t understand what is happening to her. We have found that an experienced health care provider can get a successful reading using a manual cuff without going to the high pressures that occur in automatic systems. Some of the newer assistants apparently don’t even know how to take a blood pressure manually. In one case, an assistant’s failed attempts to get Peggy’s blood pressure (the assistant insisted it was not going to be a problem to use the automatic cuff) left Peggy in tears and clearly distressed.  The doctor was very consoling and told us that there were enough other clues to her condition that he would not force the issue of getting blood pressure that day unless there was some indication that he really needed to get it.  Fortunately, it was not necessary and she gradually calmed down.

During the extended visits, the doctors have discussed the pros and cons of continuing with various diagnostic procedures such as mammograms or colonoscopies.  Peggy would not understand what is happening and the trauma of forcing her to undergo some of these procedures would be significant.  In all of the decisions, my wife has decided on the course of action that she believes will cause the least harm and trauma. For example, we consider the probability of Peggy dying from an undetected colon cancer to be low enough at this stage that it is not worth forcing her to undergo the process.  The preparation would be incredibly difficult for her and having anesthesia would likely have a negative impact on her already diminished mental condition. The benefits do not outweigh the trauma and risks.

Could we be wrong? Yes.  But, you can’t predict the future.  You have to make the best decision that you can make with the information you have available.  I know that every decision my wife has made for her mother has been made after long consideration and that each decision was reached with her mother’s overall wellbeing as the primary factor.

The take-away for this article? If you can find a doctor who will have extended sessions with you, please consider it.  It will be less stressful on you and the patient. We now go to the doctor expecting to have a pretty good assessment of what is happening with Peggy and what may happen in the coming months.  We understand things that we can try to make life better for her and we have enough latitude in the guidance we are being given to make decisions for ourselves.  I hope this catches on.  Alzheimer’s is a slow, progressive slide back towards childhood.  I can’t think of anything that would be considered an acute Alzheimer’s event.  So, Alzheimer’s itself does not require constant contact with physicians.  Other conditions may, but not the Alzheimer’s.

Next time we’ll wrap up with some observations and comments regarding our experiences caring for Peggy and her current quality of life.