No one prepared me for what it would be like to deal with someone affected by dementia. I never expected such a drastic decline to happen in the span of a year.
The fairly regular phone calls gave me a false sense of security. I knew that mornings were clearer for her, so I made sure to call first thing, before the stress of the day could get to her. She was clear, lucid, sometimes even joking. She was the mother that I remembered.
But then we got to their house. Dad had recently been hospitalized so we busted butt to get there earlier to help before the family reunion. They didn't want our help, so we tried to make it a pleasant visit.
I told Mom earlier that day that the upstairs shower had leaked into the downstairs bathroom and she blew it off like it was no big deal. Then Alex got a shower and the same thing happened. We were all sitting out on the porch enjoying the cool evening air when she exploded out of the kitchen door, pointing her finger at him, screaming that he was never to take a shower unsupervised again because he made such a horrible mess downstairs. Alex sat there, stunned and confused, trying to wrap his 9-year old brain around what just happened. She continued on for what seemed like hours, with me trying to tell her "Mom, it was an accident. He didn't know. Mom, he's 9." Finally she stopped and went back inside while Alex collapsed into my arms, crying. I told him again "honey, we've talked about this. Grandma's brain doesn't work right anymore, and as much as you don't understand what just happened, neither does she." We talked about it and he wiped the tears and said he was OK, but the damage was done.
A little while later, after the kids went to bed, she came back outside. She started in again about how terrible he was for making such a mess. I pointed out to her that I had told her that the same thing had happened earlier and she just got angry. She started lobbing insults at me, slowly at first. But then they came faster and faster, like she was a major league pitching machine fully loaded with baseballs aimed straight at me - and my only options were to get hit or run for cover. She ripped me for not watching the kids closely enough (I'm not a helicopter parent and she never was either), for stealing a nap on the porch swing (never mind the 20+ hour drive to get to their house the day before), for having such horrible children, for "poking at that thing all day" (her version of me texting with other family members in preparation for the family reunion), and on and on it went. We got into a full blown screaming match that resulted in me running inside to our room and sobbing uncontrollably for over an hour.
It wasn't just the insults. Trust me, they hurt like hell and cut me to my core. To see her inflict so much emotional pain on Alex ripped me to shreds even more. Having my girls come into our room to comfort me and hold me and reassure me that I'm NOT a terrible mother reinforced to me that she was wrong, but shouldn't have even had to happen.
She still has good moments - sometimes hours or days even. But the bad moments creep up, seemingly with no warning. Maybe it's because I'm not around enough to see it regularly, but living 1100 miles away makes regular visits difficult. Maybe I've been shielding myself from it, intentionally or not. Maybe their refusal to get (or admit to?) an official diagnosis has given me a false sense of hope that it isn't really happening.
I had been told that this was happening. Some of my brothers and sisters see her more often and they warned me. I know from my own research, from my past experiences as a case manager, and even from friends who have experienced this same journey that these things happen.
But I wasn't prepared.
That's not something that I say very often. I do my best to be ready for anything. I make my lists and check things off and review every possible scenario to make sure that I am prepared for anything. I knew that she might be overwhelmed with all 7 of us being in her space and disrupting her routine, so we planned various outings to give them a break from our chaos. But it wasn't enough.
I can't even begin to imagine what it must be like to live in her brain every day. The constant confusion must be overwhelming. But the confusion that those around her experience at the same time can seem almost catastrophic because we can only watch the decline, helpless to change it. All we can do is get hit or run for cover.