I finally decided to tell people about Bob's disease this week, and it has been an emotional week.  I could not do it before as he was very sensitive about it, and has never acknowledged that he has it, even in the early stages.  He is so good with covering it up, it is amazing.  If you watched the Glen Campbell story you will know what I am talking about.  When asked a question, he would just pass off the answer by saying, "Oh, I don't have to know that (and neither do you!) and I don't care about it.  One time in the neurologist's office when they were trying to get him to tell them where he was, he was evading the answer so cleverly that we all got to laughing so hard we were crying!  So when he was aware, I could not tell anyone.  Bob has always been excellent at names, much better than I am.  So when he didn't know people's names or introduced them wrong, I was really concerned.  And even after he was diagnosed, he was on the computer sending and receiving emails, he was active on Facebook, and he loved calling people on the phone.  He had a whole network of friends he kept up with.  So recently I opened his Facebook for him, and there were many messages there that hadn't been answered.  So when I put the message on my Facebook timeline, and also on his, I got an overwhelming response of love and support.  Then many on his Facebook sent private messages saying they wondered why they were not hearing from Bob.  It is surprising that so many people that responded had or has a relative or spouse with Alzheimer's.  And several others were dealing with other diseases that put them in a caregiver's role.
When I first decided to get a few people know, as it was becoming obvious that there was a problem, I was very unsure how to do it.  Bob had been a leader both in his hospital job and in the church a lot of hospital employees attended.  They would be used to him being in that role and would look for him to function like that.  Also, he was very good at seeking out the hospital employees that needed a little extra help or encouragement.  So I went to the Alzheimer's Association for help.  They suggested that I tell a few people that I trusted and tell them it was OK to tell people.  A lot of our friends knew, but in confidence.  But the first week we went to church after that, a member came running up to me and said "Bob says Roma is at the door handing out bulletins.  Is that true?"  I had to tell her he must have been mixed up as Roma moved away many years ago, and she wasn't there that week!  So that worked somewhat, but there were still others that didn't know.  Also, when he was talking to someone and got "off the track" I would slip them a little card, available at Alzheimer's Association offices that says "My companion has Alzheimer's disease.  Please understand."  Those have also been very  helpful at restaurants, etc.
The grandchildren have known for several years now, since they were picking up that things weren't right.  I read them a wonderful book by Maria Shriver titled "What's Happening to Grandpa?"  After I finished I asked if they knew why I read that to them and they piped up "Because our Grandpa has Alzheimer's".
So now I can relax more, since people will understand.  Until next time...Betty