Marion’s Dementia Story from Early Stages


Marion is now 82 years old and I first started noticing her memory problems after we lost my dad.  She had all the classic signs of the early stages of dementia.  Couldn't manage her finances any more, forgetful about recent events dealing with time and dates, loss of independence, loss of balance and her hearing got worse.

It's been about 4 years since my mother finally had to go in for surgery due to Trigeminal Neuralgia (facial nerve pain).  This surgery was in the area of the brain just behind her right ear.  The surgery was to place a spacer between a nerve causing the TN and a constricted blood vessel that was putting pressure on the nerve causing her severe face pain.  The surgery happened a few months after my father passed away which I think the face pain was brought on from the stress of my dad dying.  She had two previous operations with gamaknife several years before to try and correct this problem.   This is when I first noticed the dementia in my mother soon after the surgery and my father's death.

At first, I was just to let it pass but then I seeked a doctor's help which lead finally to going to a memory clinic.  They believed it was an early stage of Alzheimer's which they recommended her to begin Aricept after many tests.  They said she could return in one year and perticipate in a clinical trial if we choose.  

So one year later we returned but now my brother who was diagnois with bone cancer of three years was beginning to have difficulty.  The new tests for my mother showed her slipping slightly but then she was becoming very depressed about my brother.  At the clinic they began additional tests to qualify for trials; MRI, blood tests, etc.  This went on for a several months as my brother got worse and died.  My mother was so depressed we had to put off the trial and started her on anti depressants.  Within a few months she improved and by the forth month I took her off the anti depressants and returned to the clinic.

Again they tested her and found her slightly better than the last test.  We finally finished the requiring MRI but they found the area of surgery behind her ear and an area that appeared to be a tumor.  We checked this out with her surgeon from the TN and he said it was only a small cist from the surgery that would not change.  Now about two years after the surgery she did not qualify for that trial so we waited awhile and then redid the MRI and other tests to get into a different trial.  Finally about 6 months later she was able to get into a trial.  During all our visits to the clinic the nurse needed blood samples.  Each time my mothers blood veins would collapse.  This too has been an on going problem of my mother along with low blood pressure.  The clinic continued to say it was Alzheimer's but I was starting to question them as my mother was not really getting much worse and even a little improvement after the anti deprassant.  

So now about one year after the trial she is still about the same and I really did not notice anything different from the clinic drug. Her Dementia is classic early stages but for four years is that possible to still be in the early stages?  Of course I am hoping and that it will not progress and more than it has.   The Clinic now is closing as the doctor they were using has retired.  I am looking for new answers.  I don't feel she has Alzheimer's maybe Vascular dementia but not sure.  I don't want to loose my mother to this!