EDITOR’S NOTE: This site has been all but dormant for months now because I just haven’t taken the time to update anything. My dad was diagnosed with dementia last winter (although we’d suspected it for years) and the floodgates of trouble opened up. I won’t go into details, but the tentacles of delusion, deception, and deceit go way beyond the diagnosis, and my sister and I and the rest of our family are all trying to pick up the pieces. And my 90 year-old dad is right in the middle of the mess, but he doesn’t even understand that there is a mess. Anyway, I wrote this back in May, and am only getting to publish it now. This has been, and will continue to be, one of the greatest challenges I have ever faced as a son, but I am determined to love, honor, and serve my dad more than ever. More to come…
Each morning I awake and sit up and swing my feet over the side of the bed and stomp them onto the floor and rub the sleep from my eyes and stand up and stare into the horrible face of dementia. It was the last thing I was thinking about when I shut my eyes last night. It will haunt me throughout the day. It’s my new favorite thing to pray about. “God, please help us.”
Confusion. Short-term memory loss. Poor judgment. Losing things. Inappropriate relationships. Losing track of time. Losing thoughts in mid-sentence. Paranoia. Anger. Standing in a room and not sure why. Resentment. Denial. The same questions repeated. Over and over and over and…over again. Doctor’s appointments. Court hearings. Attorneys (at three-hundred dollars an hour). Difficult phone calls. Loss of control. Exploitation. Distrust of people that have always been trustworthy. Can’t do simple math. Can’t draw the correct time on a piece of paper with a blank clock on it. Can’t remember the five things that they said they would ask about twenty minutes ago.
“Do you remember meeting with me last week?” Of course not.
“What did you have for breakfast?” No clue.
Pain. Loneliness. Despair would be an appropriate emotion, but it’s impossible to remember to feel that. It sometimes takes a reminder to get appropriately mad again. And mad at what? Oh, right.
This has officially only been going on for months, but anyone looking in through the cracked window to the outside world would have seen the signs years ago. At first it was just written off as “eccentric,” as in “Oh, he’s always been a bit odd. He’s just clowning around.”
“What was your dog’s name when you were little?”
“There was a dog?”
“Hahahahaha.”
They call it atypical frontal lobe dementia and it is an equal-opportunity hideous thing. Anyone can get it. Doesn’t matter if you are rich, have advanced degrees, live in The Hamptons, and are adored by everyone. It may be caused by an interruption in blood flow, or maybe something else brings it on; it’s hard to keep everything straight. You might get it. You might not.
They say it can’t be fixed. Can’t really even be managed. There are drugs to take the anxiety edge off and keep the paranoia away; but that just blunts the tip of the nasty sword that is slicing away at the frontal lobe. Capillary by capillary shut off like so many valves. And that being done atypically. What does that even mean, atypical? What would be typical? I tell you what, typical sure ain’t normal, because normal is in some locked room and who knows where the key went.
Keys can just go places all on their own, you know.
“There was a dog?”
Each day worst than the last. The dimming spiral into grayness. If it weren’t for God, it would be hopeless. But He always brings hope. Yes, even in the swirling fog of atypical-I-hate-this-horrid-thing, God still brings hope.
Practically speaking, I know how this will end. There will be a day when most of the earthly efforts can stop. We can and will keep praying and hoping, but we will be able to stop doing without feeling bad about it. And it may well happen with a phone call and a few shouted words, because he’s so deaf.
“Hi Dad. It’s Peter…Peter Lewis…I’m your son…