My Mother used to be a teacher. When she graduated from college she taught elementary school for years. She gave up that career when I came along so she could be a full-time mom for me and later for my sister. But that by no means ended her role as an educator.
After my sister and I had been in school for while, Mom embarked on another career, founding a crafts and arts business. It was successful and it wasn’t long before she was teaching employees how to paint, construct, and sew her various items so that she could concentrate on selling. I mean to use employees in the loosest meaning possible, as these women were friends and neighbors who worked from home. The business model was as much an excuse to socialize as to make money and I think it is fair to say they all had fun. In particular, Mom enjoyed going to the craft shows to sell. Her skill at doing so bordered on being a calling. This also became a great excuse to travel around the country going to craft shows as far away as Arizona or New York.
As the years marched by, the hectic pace and long hours of craft shows got to be more difficult. There also started to be some shifts in Mom’s personality as she developed a growing concern with her health. We all change as we get older and with so many of her friends undergoing various treatments we didn’t think it too unusual for Mom to worry a little about her own health.
That worry slowly turned into a growing obsession. Soon she was seeing doctors of one specialty or another nearly every week and amassing a collection of medical books of her own. These things so concerned her that it was nearly all she would talk about with us. I suppose in a way she was trying to teach us what she considered to be valuable information that would save our lives. Creeping in around the edges was a worsening memory loss. Dad would tell stories of how Mom would forget the names of people she had known her whole life. This didn’t happen often at first, but it did contribute to a sense of unease in our family.
Mom too knew there was something wrong. She worked hard to mask her problems and exercise her memory. She had read somewhere that playing checkers is good for the brain. So playing checkers with Dad became a daily ritual. Actually the word ritual can be applied to a lot of the things she did. She had very specific ways of getting through daily life such as: alarm clocks that were scattered around the house and her car to remind her to take medications at very specific times or to remember to eat; or tables that would be set for events, weeks in advance to be a daily reminder to prepare for that upcoming meal.
Her methods of coping with her memory loss were clever and effective. Looking back on it now, I am so proud of her.
Eventually though these changes she underwent came to crisis moment. This past March she ran a red light and was pulled over. This event wasn’t part of her plan and she was unable to adapt to it appropriately. The officer knew there was something wrong and called for an ambulance and backup. She was uncooperative to say the least and the police called me to try to help calm her. So I went to the scene and tried to reassure her while she was in the ambulance before they took her to the emergency room to be certain she wasn’t having a stroke.
Those hours in the ER will haunt me. The stresses of that day’s events were too much for her to continue to maintain her masks and her self control eroded away in fits. No words from her family or doctors could reach any part of her mind that could be reasoned with. She had to be restrained for everyone’s protection and sedated before they could diagnose her altered state. Mom was just not herself.
Over the next few days she was seen by a parade of neural specialists of one kind or another and each in turn decided that she hadn’t had a stroke or similar sudden catastrophe. Instead this seemed to be some form of dementia. When she finally got a psych consult, he explained to us that she definitely had dementia and needed to be moved to another hospital where there was a mental health floor, so that he could try to treat the symptoms with medications and diagnose her condition more accurately.
The next three weeks were hard for Mom. She was so afraid for her health. All of her rituals and routines were disrupted. She felt she needed to get home and back to her good diet to save her life. Physically she was in excellent condition for a 68-year-old woman and daily tests confirmed that, except for her. Medications did help her think a little more clearly and calmly. But not as well as her psychiatrist expected and he continued to look for an answer while we made arrangements to get her out of the hospital and into a nice assisted living home.
Then Mom’s psychiatrist had a eureka moment and pieced all of her symptoms over the last few years with her brain images and slow response to medication. I got a call from him a few nights ago in which he explained that Mom has a rare, specific form of dementia called Frontotemporal Lobe Dementia. In his whole career he has seen it less than five times, but in reviewing the literature, Mom’s case is a textbook example.
This is a particularly aggressive dementia with an average survival of eight years after the onset of symptoms. Mom had first shown signs of this nearly ten years ago. It was good to finally have a firm diagnosis, but heart rending to discover that Mom’s prognosis was so bad. I suppose we all hoped that the medication would help her enough to come home for a few years. That isn’t to be. So we’ll move her soon to the nice place we’d arranged as a transition from the hospital that will now be her home until the end.
It has been arranged with her psychiatrist to do some MRI scans of her brain to chart the progress of her decline. So rare is her condition that little is known about the stages and how that relates to the physiology of the brain. We’ve all decided to help so long as Mom isn‘t upset. Mom knows that once we get her moved into her new place that she’ll have appointments with her doctor once in a while to have a new MRI so they can see how she is doing. She thought that sounded nice.
This one last time Mom gets to be a teacher.
[edit: Mom will not be part of a study or have any more MRI scans that aren't needed for further diagnostic purposes. Her psychiatrist has neither the students nor the funding to assemble such a study at this time.]
[edit 2: Mom passed away today, December 2, 2013. Her long fight with dementia is over.]