This journey with dad has opened my eyes to many things.  I admit that I lumped elderly or “old” people as a group with certain attributes that were to be expected, forgetful, sometimes frail, walkers, hard of hearing, etc.   As I have spent more time with mom and dad over the last several years and particularly with dad, I have learned that  the public’s understanding of dementia and Alzheimer’s is definitely lacking.

A short journey to a doctor’s appointment is an ordeal.  Dad’s doctor is wonderful and understands dementia and gets to know his individual patients.  He knows that dad has a very short attention span and waiting makes him anxious and therefore possibly aggressive.  The doctor makes the exam as quick as possible to diminish dad’s anxiety and knows not to ask dad a lot of questions.  After the doctor is satisfied that he has laid his eyes on dad and checked him out in person, we take dad out into the waiting room where my husband keeps him entertained while I discuss any issues with the doctor.  This routine works well for us.

Unfortunately most offices are not set up to accommodate these issues.  A lot of it is total misunderstanding of the disease and its symptoms.  The last time that I took dad to the eye doctor it took us 3 hours to get in and out and I thought he would go ballistic by the time I got him out.  No amount of pleading or explaining on my part made any difference to anyone in that office and I will never take him back there again.  (And the office was not that crowded that day).  He has lost his glasses numerous times and finally sat on them and broke them.  Fortunately his eyesight is not that bad and he can read and see without his glasses, so I do not see any point in replacing them.  If I take him to the eye doctor, can he answer all of the questions that are required?  Can you read these letter?  Which screen looks better the first one or the second one?  Can you open your eyes wide and hold them open?  Don’t worry, I am only going to put a little drop in your eye.  These questions sound simple enough, but completely overwhelming to someone who is slowing losing parts of their brain’s function.

We also had a couple of unfortunate issues last year where dad fell.  I am notified immediately and I always rush to meet him at the emergency room.  I have him routed to a smaller hospital and I am able to actually call the emergency room and tell them that he has Alzheimer’s and I am on my way.    That has worked really well, but there are no processes in place at hospitals in Cumberland or Hoke County in NC that identify Alzheimer or Dementia patients.  I or my siblings stay with dad during hospital stays normally.  I was with dad when he was taken for a MRI during one stay.  The technician, although very nice, was totally oblivious to any special care that dad needed.  The bed that he was on was wheeled up to the official scanning bed and she immediately told him to move over and slide up and turn on his side and continued repeating multiple directions until I told her to move aside and let me do it.  I had told her that he had Alzheimer’s and couldn’t follow multiple directions, but she had no understanding of what I meant, even though “her grandmother had that also”.

During another stay at the hospital, the nurses were very understanding, but dad can not be given directions and left alone.  His emergency doctor was very understanding and ordered 24 hour sitters to stay with him to ensure that he had help getting out of bed, to the bathroom, etc.

So many aspects of this horrible disease are not readily understood by the masses.  Finding treatment and a cure are very important, but increasing awareness and getting procedures and training in place are important also.  How would dad be treated if he was placed in an anxious situation and responded aggressively?  Would he be restrained?  Do police understand the disease and how to talk someone down and comfort them?  So many possible scenarios, situations and pitfalls when dealing with Alzheimer’s.  So many potential education and training situations.  How do we get the word out and how do we educate emergency personnel? So much still to do in this field.