Saturday, February 8, 2014

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!

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