In the past two weeks, I’ve made more connections to people within the dementia community than I have in 13 years. Thank you Twitter and the power of hashtags. I can't believe I'm saying this, but I'm so grateful.
13 years ago my dad was diagnosed with dementia. Frontaltemporal Lobe Dementia (FTP.)
Oddly it gave me some kind of relief. I knew something was up. I didn’t know enough to think that it was internal or medical, but I inherently knew something wasn’t right.
He had lost a lot of emotion and didn’t engage in a way that I expected him to. Or really how any “normal” person would, although we all know how relative thatword is. In moments when I'd share super exciting news with him, all I’d get in return was a blank stare. A comment, a look, a glance totally and completely devoid of emotion.
As an emotional, expressive person (understatement of the year) this was reallllly,incredibly hard for me. Like, really fucking hard.
It made me mad. It made me want to shake him and yell “didn’t you hear me? I just got a new job". Or "I was called for an interview.” Or "I'm going to Spain!"
Nothing. Nada. Zip. Zilch.
I just did not get why he wasn't excited or happy. No emotion.
Frontaltemporal Lobe Dementia affects the frontal temporal lobe (Ya think?) And this is where your personality and processing functions are housed.
So while my dad might have been excited on the inside (he is a proud papa after all) there was no way I'd know that.
Without that diagnosis, I was just mad. And annoyed. And inpatient. And pulling back from sharing anything with him. Because, why would I?
With that diagnosis, I slowly got it. It wasn't his fault. He wasn't not excited. It was just that there's a larger force at play.
I softened towards him. I tried to remember that just because he's not showing emotion doesn't mean he's not experiencing it. Chances are he can't put expressions, words or feelings towards it.
Now when I share news with him, I try and remember that.
Don't get me wrong. I'm not a saint. I still get annoyed and have to take frequent deep breaths when conversing with my dad, but there's so much more love and compassion there now than there was before.
When I'm nearby sharing news, I try and deliver it with a touch of my hand to his arm accompanied by a smile. That seems to register more with him.
Clearly, I wouldn't wish dementia of any sort on my worst enemy, but as someone who tends to be Ms. Positive Patty, this is my positive spin on the situation.
My dad's diagnosis has helped me heal my relationship with him. To get closer to him. To find even more love and compassion than I ever thought possible. And oddly to get to know him better as he begins to slip away.
Love you Pops. xx