Quantifying Change
The medical profession is very dedicated to measuring our demise. Once a person begins to show signs of memory loss, the process begins. There are standard tests given by one’s family doctor. Imperfect scores indicating the beginning of memory loss, may lead to visits with a psychologist, a psychiatrist and/or social worker. Ultimately all roads for the elderly will lead to a Gerontologist. The Gerontologist may recommend further tests be administered by a Neurologist in an attempt to discover the root causes of the memory loss. There are dozens of conditions which can affect the brain and cause dementia. Some of these have other specific physical manifestations and it is important to assess the situation in order to direct the physician’s decisions regarding anticipated care and medications. For younger patients with memory loss, the investigation will probably rest with a Neurologist who will assess why this unusual condition is occurring.
Gerontology is a truly honorable profession. Wanting to help us to ease into our golden years with as much assistance as possible is a far cry from the days of yore when people were hidden away in embarrassment.
Still, there are limitations as to what even a professional can assess in short appointment with someone like Hubby, once every six or eight months. Once a test is administered, statistics and graphs are moderately helpful to the professional, but what really matters is that the specialist knows what occurs on a day-to-day basis over the many months in between appointments. Standardized tests only reveal a small segment of the daily changes. To get the most out of these meetings, the caregiver needs to participate by sharing information. This applies, not only to the care of a person with memory loss. Anyone caring for the elderly really should consider the same course of action.
The necessity to advise your loved one’s doctor of the changing realities, may present itself as an awkward situation to navigate. This problem does not only apply with family of those with memory loss or dementia. The situation can be similar with a cancer patient or someone with another serious disease. How much does a spouse want to reveal in front of the patient being discussed? There are sometimes very embarrassing topics. Sometimes, the patient will deny the veracity of the spouse’s statements, or try to minimize them when they feel humiliated. There is sometimes a conflict that people feel when torn between trying to help their loved one and thinking that they are entitled to their “privacy.” When one is very ill or mentally compromised, they need you more than ever, to accompany them to doctor appointments. They will likely forget much of the information imparted, and without your assistance- much would be lost.
I recall when my mother had lung cancer. A good friend suggested that we tape record all meetings with doctors because frightened patients mishear what the doctor is saying, and become quite confused about the information imparted. My parents did this. They BOTH needed to be able to review the meetings.
There is a limited amount of time any doctor will assign to each appointment. With experience, I devised a solution for my need to communicate with the doctor both in confidence and while Hubby was still in the room with us. The night before an appointment, I would sit at my trusty computer and write a list of observed changes in behavior – those about which I felt the doctor needed to be appraised. A handwritten note would have been fine, but much harder on the doctor trying to decipher my penmanship. By taking time the evening before to think about the issues which needed his attention, I was able to write a cohesive letter delineating each issue. Handing the papers to the doctor upon entry to the appointment gave him/her a chance to focus on our immediate concerns. It essentially presented the doctor with the questions needed to be discussed with the patient. Without this introduction the expert would not have been able to focus on the degree of severity of a particular problem and /or its possible remedy. One cannot analyze what one is not aware is happening!
Upon entering any doctor’s office, they would always ask Hubby “How are you feeling?” “Great” was often his response. “Then why are you here?” inquired his doctors. Hubby looked at me for help as he had no clue why we were seeing this particular physician. Sensing that the doctor was indeed interested in his health, Hubby would go into a monologue about one physical issue or another, not realizing which specialist was asking the question. The cardiologist was not really interested in his ear ache, or weight loss (always exaggerated for affect!). Nor was the hematologist fascinated by his concern about a possible hernia or a skin condition. Inevitably, I had to remind Hubby to focus on the specialty of the doctor of that moment. These are all attendant problems with memory loss.
On occasion, I have written an email to the family doctor expressing a specific concern which needed consultation. This is a last resort, only to be used if one has a very close relationship with the doctor. They have so much paperwork and bureaucracy to deal with, that additional communications from us can be a bit of an irritant. A healthy respect for their overwhelming caseload is certainly appreciated by the doctors we deal with regularly. It is a bit of an imposition to expect the doctor to remember the details of the email when you finally are in his office.
There appears to be a widely accepted scale which certain doctors use to explain the seven stages of dementia. I was not familiar with it as we live in Israel where it is not used widely. However, it is prevalent in many countries and caregivers often refer to their loved one being in a stage 2,3,4 etc. The explanations for each stage are described in detail online. Google can help you with the specifics if you are interested. I am not personally fond of this form of categorizing, as patients vary enormously, but I do understand that it has its purpose.
On another occasion we were referred to Memory specialists at a local hospital. In my naivete, I had the audacity to think that they would want to help Hubby. After waiting months for the treasured private appointment, and paying a high fee for the honor, the esteemed doctor actually brought me to tears. When he was interviewing Hubby, it seemed that he was intentionally confusing him. The question went something like this “When you went for your CT scan last month, what did your brain scan reveal?” I knew Hubby would not know how to respond so I answered – that Hubby did not actually have a brain scan last month. The specialist was furious with me. It had been a trick question, intended to see if Hubby would catch the error. I was banned from the room with a lecture about how I needed to have respect for the patient and allow him to respond. After I was ejected, holding back the tears, I was furious that the doctor had been so insulting, especially in front of my husband. It was not acceptable that I was being denigrated for the way I was caring for Hubby. When he called me back into the room, I was still fuming. He made a weak apology/explanation which was totally insufficient. Medically, nothing of value was offered, and yet I was told that we should return in three months. Another private bill from this specialist – to pay to be insulted? Not my style. Later I discovered that we had unwittingly been roped into a study on dementia by that same doctor. Unbeknownst to me, I was paying to be studied so that he could write a paper to advance his career. I was livid. Needless to say, we did not return.
Families are often confused as to whether they should be going to a Neurologist or a Geriatrician to monitor the care of their loved one. It really depends on what is causing the dementia. I prefer the attention of a specialist who looks at the whole patient who presumably has age-related issues along with the memory loss. This is the specialty of a Geriatrician. My observation in general is that Neurologists are far more specialized in more complex issues relating to the brain, and are not the first port of call in the caregiving process. One visit to a Neurologist may be required to determine the cause of the dementia, but in most cases, I have found a geriatrician is best for day-to-day issues and dementia medications. The chapter that I have published called Beware of Ologists – Chapter 6, shares more of my thoughts on this subject – another chapter that I hope you will enjoy.
