Ron Burge | CaringBridge

Ron Burge

First post: 2/16/2017 Latest post: 3/6/2017


Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.


Ron was diagnosed with early-onset Alzheimer's in 2012.  We had noticed him asking the same questions repeatedly over and over in the space of about 3 minutes , and some unusual forgetfulness.  We made an appointment with his primary care doctor, who did some tests and referred him to a neurologist who confirmed the diagnosis.  He was put on Aricept and Namenda, which he has taken for years.


Over the past 5 years we have seen a slow but steady decline in Ron's cognitive functions.  He forgot to pay bills and wasn't able to manage his money; his doctor recommended that he stop driving his car; he began to forget people's names; he could no longer write his name; he locked himself out of the house on a freezing February day.  About a year and a half ago, I retired from my job as a teacher to stay home and care for him full time.  We traveled, took weekends away, especially to Hannibal which we love.  We spent last January (a year ago) in Florida and really enjoyed it. 


The past two months have seen a very sudden sharp decline.   He is not eating as much and has lost 19 pounds.  He has lost much of his language skills.  He has become very unsteady on his feet and has fallen several times.  He does not know most of his family.  He is sleeping more and more.   The neurologist says he now sees symptoms of Lewy Bodies dementia as well as Parkinson's.  As of three days ago, he suddenly became unable to walk or stand, and is now in a wheelchair.  At the recommendation of his physician, we have called in hospice help, and they have been wonderful support.   Family, friends, and church have all rallied in support of us, and we are very grateful for all the help.   We have moved in with daughter Amy, her husband Art, and their kids;  sons JJ and Todd visit often to help out.


People have been asking for updates, but hesitating to call, so a friend suggested we open a site here at Caring Bridge where we could update information.  At this point, every day is a little different.  Currently he cannot stand or walk, so is in a wheelchair.  He sleeps a lot, but seems a little more alert and aware during the day, and is trying to vocalize, though he does not communicate in a way that makes sense.  He does not always remember who we are.  He still enjoys listening to his music especially church songs, his dog Belle, and chocolate.  


We are taking one day at a time.  We would covet your prayers on our behalf during this very difficult time.  We hope to keep this website updated every few days.


Thanks for visiting,
Susie

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