It is now 2017, I have not posted in a long time.
Days turn into weeks, weeks turn into months and months turn into years.
I have just read a few of my other posts and I guess not much has really changed for Terry.  He still does not ask any questions regarding his life expectancy, condition or anything.  He has been on Namenda since the beginning.  At first they said they would start him on half of the lowest dosage because it could affect his kidneys and lungs.  Since he already had Chronic Kidney Disease and COPD the lowest dose was all they would put him on.  After a few weeks this was doubled, and I noticed a big difference, he soon ran out of pills because the new prescription had not arrived, I really noticed the difference.
Last April I noticed that his apathy had returned at an alarming rate, his mood was more hostile and he couldn't remember things.  The Nuerologists at the VA had said in December that he should not be driving.  This led to testing by the VA, letters from his doctors to the Secretary of State and then testing from the Secretary of State.  The state decided he could drive on a restricted license only 15 miles from home and not in the dark.  During the testing he said just take his license, he wasn't even willing to fight to keep it - I insisted he at least try.  I really didn't think they would let him keep it but they did.  He has to go back after a year to be reevaluated.
Anyway, his dementia symptoms were becoming more and more obvious and this saddened me.  A man that I had gone to high school with had died from Lewey Body in January of 2016 and his wife had sent me some very interesting information and insight.  Because of other factors with my job and concern for Terry's health I decided that we could afford for me to retire.  He could no longer drive himself to the VA for his appointments and there seem to be a lot of them.  I retired the end of June.
Soon after my decision to retire I took Terry to the VA and we discovered that he had not been taking his Namenda for about a month.  halelujah!  As soon as he went back on it I noticed that his symptoms had diminished again.
After my retirement I began spending more time at our house in New York, sometimes Terry will go others he doesn't.  It seems we talk more when I am gone and he has to fend for himself.  When I am with him he gets up hours before I do, sleeps on the couch off and on all day and walks and walks.  He goes to bed at 8 p.m.  He has no outside interests except that he walks and he will talk to strangers.  He does do nice things for all the ladies on the street, this is a good thing.  He takes their garbage cans up to their houses and takes the newspaper to one lady.  He is all about routine - the dog gets fed and treats on a schedule, not a fact that she is happy with!  The poor little thing gets yelled at a lot to sit down and shut up.  It is not time for her to eat yet!  she already had two treats today!
Fast forward to now and I am seeing him decline yet again.  We had a birthday party for our grand daughter at a restaurant and we took some pictures of the family.  The ones with him in them make me very sad, you can see that he has that dementia "mask" almost like he is afraid or just doesn't understand.  I can't really put it into words but it really bothers me.
We were going out a couple of weeks ago and he was trying to put on his vest and twisted it, I had to help him out of it and he cried.  He gets slower and slower, his mood is cranky and the apathy is going to kill me. It is so very lonely, I know that no one knows what it is like every day.  Other people I know that live with people with dementia do get it but the general population doesn't.  My least favorite thing is when people that see him for maybe half an hour say "Terry is having a good day today. or Terry seems really good."  These people mean well but they have NO idea that what they see is NOT what I live with.  He puts on a show around other people, this is not at all uncommon for dementia patients.  They use all of their energy resources trying to be "normal" around the others and then they are exhausted and can't even try to act that way when they are alone with their loved one.  I get snapped at no matter what I say, he nods off all day, when I try to talk to him he either asks stupid questions that have no merit or he just shuts down.  I hear him talk to his sister or father on the phone and he is the same way and always makes an excuse to get off the phone.  I get it, he has nothing really to say.
Any way, I have noticed a decline so I wondered if maybe he was off the pills again or that maybe they would have to up the dosage again.  We were at a friends house in NY the other night when he told them that the doctor had increased his dosage again recently - I had no idea!!  Now I am more concerned.