Today I found myself in a familiar place, walking the same path I've walked for what feels like a million times, though I know it's much less. The tiled floor with it's soothing blue and tan marbled pattern leads me 167 steps towards the ancient elevators that will lower me down to his floor. This isn't his home; I refuse to call it that. The nursing home, while fantastic, will never be his home. It's not filled with precious memories of Christmas stockings and antiquing finds. It holds a few photos and some other decor but we all know the truth; the sterile room could never be much of a home. I wish there were a different way to give him the best care, but as a big guy, this is the safest place for him. But it's not home.
Tonight was not a good night. He was so groggy when I arrived and sat down on that ugly couch in the main room next to him, sitting in the wheelchair that's now become a necessity. "Hi Allie," he mumbles, hardly understandable, without even looking. His eyes are pointed in another direction and he tries to shift towards me, though he cannot seem to refocus his eyes in my direction. Yet he knows it is me simply by the sound of my voice. I can't help but smile because some days, he's not able to remember me much.
Some days, he's not the Dad I remember. Dementia robs people of who they really are. When he gets agitated and angry at times, I pray that somehow, the people around him know that it isn't the real him; it isn't the man I grew up with. Sure, he was a pain in the butt sometimes, but we all are. We all have qualities that are less than enjoyable. But like all of us, he has always had a really good side. I hope that that side is the one people can eventually see.
I try talking a little bit but he has so much trouble responding - the words are barely a whisper on his lips, and even then, only one or two at a time. He does manage to say "I love you," and blow me a kiss. That's the Dad I remember from before this dementia.
I help him get a bib on for dinner and it strikes me again just how demeaning this disease is. This man once stood six feet four inches tall while waiting for my dates; now, on his best days, he's a little bit smaller as his back and knees force him to lean over. He was a policeman, a salesman, Charming Charlie. He was the best fishing buddy to my kiddos, who dearly miss their time at the creek with Grandpa. Each time they ask if he'll be able to go soon, it breaks my heart. That vibrancy has been replaced by this disease, and now I'm putting a bib on him so we can minimize the spills at dinner.
Tonight he wasn't hungry, and chewing was a chore. We carried on, both his hands holding one of mine as I scooped each bite so he could eat. Each bite fed to him by the hand of another is yet one more blow to his ego; another reminder that he is no longer the man he was one year ago, five years ago, a lifetime ago.
He let me rub his arm tonight, which he normally never does. Usually once we get the lotion on, he's good, but tonight, he would look until I'd rub his arm again, and then smile. And as he got into bed and drifted off to sleep I listened as he took some deep breaths, then quiet until the deep breaths started again. Sitting next to him, his hand in mine, I couldn't stop from thinking back to how the nights were just like this during Mom's last months. And I'd be lying if I said I didn't feel the same: torn between wanting him to fight and keep truckin' as long as he can, and wishing for him to find peace, even if that means leaving us.
This disease sucks, plain and simple. I wish there were more thoughtful words to express it, but that's the truth. Tonight, my heart is just broken and I wish there was more I could do for him.