What's it REALLY like?

A friend that I had not talked to for 4 years, called me yesterday. She knows Bob has Dementia and of course our topic of conversation eventually drifted in that direction. She told me her Mom had just been diagnosed with MCI ( Mild Cognitive Impairment) which is what the Physicians usually tell you before the diagnosis of Alzheimer's or Dementia comes later. As I sit here typing this my thoughts go back to that day when the Doctor said Bob had " Mild Cognitive Impairment" and that my first thought then was- MILD? There is nothing MILD about this. For God's Sake- He got lost  a block from our house. I left that office feeling like the Doctor just didn't understand what was going on.  I came home and searched the internet for more information and THAT was when I knew what we were facing, and what the Doctor was "mildly" preparing us for.
Anyway- My friend said-- "Please prepare me.. what is it really like." I was at a Loss for words--
So many things I wanted to say, but did not want to make things seem hopeless. So many things I wanted to warn her about, but then they may not happen for her Mom so they are better left unsaid. There is kind of a running joke among caregivers- Once you've met One case of Alzheimer's --You've met one case of Alzheimer's. No two cases are the same and one patients symptoms can be so much different then another's.
In the beginning Bob was very skilled at covering his "blips" of memory loss. I think a good year passed before people really started noticing. I noticed, but I was with him day in and day out. Later as it progressed he was just in denial and blamed the memory lapses on other things (and I also did.) He was just tired, or maybe something got wrote down wrong, or Something was stolen, not hidden or misplaced.
Now we are just at a stage of confusion most days. His memory is no longer measured by days or hours, but by minutes and sometimes seconds. He still has tons of memories of the old days and we talk about those times often.
Bob now needs help showering & dressing. He gets lost in the house now instead of on the roads. He knows he feels hungry but doesn't know to go to the kitchen to get something to eat. He does not have a sense of time and is often confused about if it is day or night. He still knows who most people are or recognizes the face but cant bring up the name or where he knows them from. He can't carry on a conversation and he most definitely can't start one on his own. He struggles to find the right words to say what he wants, and when he does decide to speak you have to be very patient and just wait- he will eventually get his point across.
There are many "advice-givers". The "Use it or Lose it" attitude. Make him do soduko, or crosswords, or jigsaws, or memory cards... Got news for them- The man can not tie his shoes so I seriously doubt doing a crossword is on his list of "do-able" things. He probably couldn't have or wouldn't have- before Dementia either. Its hard for people to understand that this cant be fixed. Using a brain that doesnt work right to solve a puzzle just frustrates and causes panic in Bobs case.
I told my friend I could go on for hours but her mom's MCI and her personal experience could be so much different then mine and Bobs..
She was very tearful and Whispered " What are you going to do when he no longer knows who you are" . I told her that is one of the things that upsets me the most- thinking about the day when Bob does not know who I am ... I told her I imagine I will carry on just as if he did-- because I will still know who he is. 
When your memory is a holey as swiss cheese you have to take it a day at a time- and sometimes minute by minute. Bob rarely remembers he has Dementia. So that panic and worry he was feeling for the last few years can now rest on my shoulders instead of his. This seems to free him from pretending and faking his way through the day. Oh I cant even imagine the energy it must have taken to try and cover his memory loss.
Day by Day -Maintain a sense of humor when you can, cry when you have to, be angry when you have to, but try to find a moment to enjoy and treasure each day. Take it day by day people!

Night Terrors - Part 2

So- If you read my previous post you know Bob has been having problems with night terrors. He has always  talked in his sleep but never has gotten up and walked around.
A few nights ago he scared me-- NO-- I was terrifed. He went to bed at 7:30 and I was in the living room watching TV. About 8:30 I saw him peeking around the corner. I waved at him. He jumped out into the hall entrance and I immediately noticed that he was dressed in his street clothes again. I also noticed that he had his folding knife open and in his right hand. He started yelling at me- " You should have knocked-" I was so startled I just shouted back- " What-- why would I have to knock?" As I was pulling myself off the ceiling he walked back into the bedroom. I went in after him and said " what are you doing?- What are you talking about, Are you awake?" He said "yes".
I said were you when you were in the hallway? He said- "I dont know"- He got back in the bed- rolled over and went to sleep.. I grabbed the knife put it in the safe with the guns and went back to the living room with my heart pounding out of my chest.
I had  made him put all of the guns away quite awhile back as I wanted no chance of an "accident". Now I have to tell him his knives are going in there too- For the last two days I have been thinking thou-- there are knives and sharp objects all over this house. Potential weapons.
Last year I had alarms installed on the house. The doors are "armed" so I know when he comes and goes. Today I ordered another sensor alarm-- I will install it above the bedroom door in the hall-- I will know when he gets out of bed and comes out of the bedroom.  It has a Receiver that I can keep with me so I wont be notifying him -it will just be for me.. My piece of mind-- What little of it I have left.
I tried to have a conversation with him about what happened. It was like talking to a wall. Although he did say. " I would never hurt you".
I know Old Bob wouldnt-- I'm still not to sure about this New Bob just yet.
Taking precautions seems like the most reasonable next step-

Afraid Of Being Afraid

Every few days Bob has a Panic or anxiety attack. I dont know what brings them on, but when they happen it's not just awful for him- It's awful for me. Its so hard to watch him struggle. He cries- but tries to hide it- He scribbles notes in his notebook like he is trying to remember or maybe remind himself of something later.  As soon as I know they are coming I will give him one of his meds the Neurologist prescribed. Most times If I give them soon enough the panic will only last an hour or so. If Not- well they last for hours. I'm learning to NOT wait just because I don't like to "dope" him. Its a necessary thing whether I like it or not. This note that he scribbled out -- just lets you in on a little of how "afraid" he really is at times.  As you can see-- he is really starting to struggle with writing and spelling.   So many little notes- scribbled in a Panicked  frenzy. My heart aches for him.