To Know or Not to Know

Well now I've done it.  After returning home from seeing my parents,  I wrote to my Mom's doctor about my observations of her memory loss.  I haven't talked with my Mom yet, but my brother gave me a head's up that the doctor called her and talked with her about testing.  My purpose in writing to the doctor was to try to get her the standard dementia medication.  I know it doesn't cure and it is effective in about 50% of patients, but I would still like her to have the possibility.

I have watched one of my residents decline cognitively over the past year and a half.  Her family has been adamant about no medication.  And now she is getting close to the point I will have to discharge her to a skilled nursing facility.  Physically she is in great shape, but her cognition has really declined over a year and a half.  She came to assisted living in pretty good shape.  I contrast that with the husband of one of my support group members.  They have been dealing with something for 5 years and got the dementia diagnosis about 4 years ago.  He had several trials of different medication, but they did find a combination that didn't have too many side effects.  He has been at a plateau for about a year now and they seem to be having a pretty positive quality of life for the last several years.  I know not everyone responds to the medication, but if there is a chance it could work for my Mom and slow the progression, I would like to try.

Of course now the dilemma I should have had but blew right past is, is it fair to put my Mom in a position where she has confirmation of her fears with the actual diagnosis?  Is the benefit of the possibility of slowing the progression of the disease more important than the negative of knowing you have a non-curable, progressive disease?  Not such easy answers where you are facing it yourself as it is to watch other families and think you know what they should do.

I gave an in-service to my staff not long ago about dementia.  We talked about the small percentage of people who have a genetic predisposition.  There was discussion about whether you would want to know or not.  I'm looking at 2 generations ahead of me with the symptoms, if not clinical diagnosis.  My answer that day with my staff was, I was not sure I would want to know.  Now I've put my mother in a position where she may have to face the confirmation of a diagnosis.  Now we wait for the testing and results.  I think at this point my only solution is to pray; for strength for all of us, for peace with my decision, and for forgiveness from my parents for bringing this to a head.