"How are your parents?"
The question seems innocent enough. It's polite that someone knows you well enough to understand you are their caregiver, yet somehow the question makes you feel small inside. When your parents have one of those diseases that noone really likes to talk about... it doesn't have a catchy slogan like "race for the cure," a pretty pink ribbon or the widespread acceptance that it could happen to anyone like cancer, MS, Lupus, ALS, etc. Dementia can be summed up with a four letter word-DAMN! Because when you hear someone has it you think "damn what did they do wrong" you slink the opposite direction without even an inkling of understanding. Because it can't be seen and isn't on the cutting edge of research toward finding a cure, most people just don't get it...actually it's more like they're afraid they will get it!
This week I'm finding myself in a new situation. My youngest daughter is a competitive shooter, this long weekend kicks off a summer of competitions. Normally to save the expense of attending I volunteer. I received a phone call a couple of weeks ago telling me none of the volunteer positions I hoped for needed me but I could work shotgun. If you've ever been in Arkansas in the summer you understand why my reaction was, "no thank you, I'll pay my $185!" So here I am in an air conditioned room that's a cross between a dorm and a 70's style hotel. Most parents who don't have volunteer jobs follow their children through each discipline of the competition anxiously awaiting scores and sneaking their kids smiles and thumbs up signs. I'm not really a follower, Jessica knows what she's doing and she relies on her coaches for support at shooting, not me.
So what does that have to do with the DAMN in dementia? These few days are my escape from dementia; a normal day for me is a phone call to check on my folks, a trip to the post office with dad, more phone calls with mom, being tech support for Dad with his other or computer, trying to convince Mom she's done nothing wrong that Dad being angry is simply his disease, pleading with Dad to be more understanding of Mom's repetitious questions because that's her disease. Ideally, what not volunteering means I can stay in this room, transported to the 70's and relax, soothe my soul and forget about dementia for a while.
What it really means is I feel so uncomfortable in group settings, making small talk has become a lost art for me because dementia is my constant chaos. I'm relieved to not have to put on "face" and pretend to be able to enjoy conversation when following the discussion seems to be constantly just beyond my grasp. While I'm 250 miles from dementia I'm still only a phone call away, it never really stops. From the calls this morning insuring Grandma gets to her hair appointment, the plumber gets to their house, the donations from the church get to the thrift shop, Papaw gets to check the mail, mail his package and go to the bank. Oh and they've got friends coming to town tomorrow so someone has to help them decide on a lunch spot and get them there. While proximity isn't close the reality is there isn't an escape.
I did get to decompress this afternoon. I enjoyed a lengthy talk with my daughter, a leisurely nap, reading a book, a little more nap and working on my blog. So while damn dementia may never be far from my mind or my heart, I'm really excited to have this chance to recharge! Soon enough I'll be back to full time, live in person, damn dementia!
