When I began this blog more than two years ago I was posting four times a week. For those of you who follow me (thank you, thank you) I have been struggling for some time to post at least once a month. I’ve apologized time and again for leaving you for so long, as the time between my disappearances grew. I promised to fill you in over the coming months as to why my conversations with you have been so few and far between. Please know I do not see this explanation as an obligation. I want you to understand why I’ve been away and how hard I am working to come back, because I cannot possibly express to all of you how much it means to me that you’ve hung in there with me – you are a huge part of what keeps me writing this blog. With that, this is one of the harder pieces I’ve written, and it touches on a very difficult subject that I’ve come to realize I know nothing about. I hope I am able to write it with as much respect as is deserved for the people living it and the families and friends that love them.
You Can’t Go Home Again, Or Maybe You Can And Just Don’t Want To?
you chose this, you chose this, you chose this…
I say this to myself again and again as I try to rationalize why I am where I am. “Renee’s here,” my sister says a bit too loudly I think, as I wait just outside the door of a room I could have never imagined visiting. Ugly rooms like this one don’t exist in real life, just in sad books and depressing movies.
breathe, breathe, breathe…
I remind myself but it’s hard, my heart is pounding and my chest is tight. I try to calm myself to stave off a sensory overload-induced meltdown but the incessant blinking and audible hum of the fluorescent lights mixed with harsh chemical smells are making it practically impossible. I stand unmoving in the middle of a theoretically soothing, beige hallway. The striped wallpaper and cheery framed prints I’ve always called “hotel art”, manufactured and sold in bulk I’m sure, are supposed to make me forget where I am. Highly unlikely – I’m in the terminal wing of a convalescent center.
I want to melt down, I want to cry, and I want to hit something.
I don’t want to be a grown up! Or responsible for anything! And I don’t want to face any music! I’ve never done regret, a useless damaging emotion, and I’m not about to start now. I think I’ve abused myself enough over the last three plus decades. I’m done with that. However, I just traveled six hours to see a man I haven’t spoken to or seen in twelve years, is it possible after all this time that regret urged me to make the journey?
At one time I likened him to a distant uncle. As time passed he became more like a friend of the family. When things got really bad he became more of a long-distance dictator that I avoided whenever possible. And when it was finally over, he became a distant memory I tried to forget, visiting me in my thoughts now and again with a pungent bouquet, overripe with guilt and sadness. But he isn’t any of those things now, and he never was.
He’s my Father.
There is no fair way to share our history or why our final falling out twelve years ago stuck, because my telling of it would be one-sided. There are two sides to this and because I don’t know what he thought or how he felt about everything, it would be only my account. How about this: We were both at fault and neither one of us made a true effort to work things out.
So why am I here? Why did I come to see him after all this time? Rhetorical questions I could answer a hundred ways I suppose: Because my stepmom thought it was a good idea; so I could support my sister; to apologize; to say goodbye; because I didn’t want to regret not coming? All of these things? None of them?? I don’t know exactly why I came, but I’m here now.
“It’s better to feel pain, than nothing at all.
The opposite of love’s indifference…”
- Stubborn Love by The Lumineers
One Thing Is For Certain… Everything Ends
My father, after having several strokes, a couple bad falls and finally brain surgery, is in the final stages of dementia. I’ve heard some people live for several years, a decade even, after being diagnosed. It’s been hard on him and his wife, and on my sister and brother. They’ve watched his health decline and memory fade at the devastatingly rapid pace of just a few short months. I’ve been absent. We talked about it through email and over the phone but it’s not the same.
They are the ones living the reality of watching someone they love lose the fight for life right before their very eyes.
It’s a waiting room, that’s what I call it anyway. My father is in a room where “the staff” waits for him to die. Like I said, it’s an ugly room. After I pulled myself together and went in, I sat next to my sister and we listened while he lay in his bed and talked on for close to three hours. Sometimes he spoke to her and sometimes to me, not as if he knew who we were, but because we happened to be sitting there. Most of the time, however, he spoke to no one in particular and mainly to people who were not present. I didn’t know what to expect, or whether to expect anything at all. It had been so long, so many years since I’d seen him. The ex-football player and weight lifter now lay in a railed bed too weak to sit up. He cannot walk nor can he use a wheelchair, and he cannot leave his bed.
Once quick-witted and sharp as a tack, I saw no indication that he recognized his own children.
He yelled at someone named “Jack”, then told “Chico” to get a move on, all the while playing with some sort of mechanical blue box with a cord the nurses must have deactivated so he could toy with it, keeping his fidgety hands busy. I sat at his bedside with my sister, and we listened. We talked to him for a bit and I looked at old photo albums left in his room in a heart-breaking attempt to connect, or to spark a memory, I guess. My Father didn’t seem to recognize me, and maybe it was better that way. I don’t know, I was just hoping that he was happy to have visitors.
He was caught up in his delusions and appeared content in his hallucinations.
Most of the time I felt he didn’t realize we were there. I say felt because I don’t know exactly what occurs in the final stage of dementia, and honestly I wouldn’t trust any reports that came from anyone other than the person experiencing it. In my advocacy work, I’ve seen way too many incorrect assumptions from non-autistic “experts” about how we Autistic people think, feel and experience the world to believe someone when they report how someone else experiences something. It’s guessing. What if in dementia there is the body/mind disconnect that some Autistic people experience? What if people with dementia are not completely unaware of who we are and why we’re there? What if their body just won’t allow them to communicate how aware they truly are?
I don’t have those answers and I don’t expect them anytime soon. But assuming someone is incompetent or that their mind has failed them is not a mistake I’m willing to make.
All I know is that I didn’t want to leave his room, not yet. I don’t know what I was waiting for. I knew there would be no apologies, no forgiveness for the years we lost and I didn’t want or need either. I know I would have apologized all day long if it would have in any way comforted him, and I would have meant every word of it, too. After mere minutes, I knew we weren’t going to go there. It was too late for that. So why stay all those hours? I don’t know, I think I couldn’t stand the thought of him being alone in that awful room, estranged or not, no one should have to be in that room alone.
I don’t know. I don’t know. I don’t know. How many times can I say, “I don’t know” in one post?
I thought I knew a decent amount about dementia from my neuroscience studies and different accounts from friends who had parents and grandparents in various stages. When I sat across from my father I had one of those “a-ha” moments. You know the ones where you think to yourself: Ah ha! I don’t know shit. Please excuse the bitterness, but the feeling that came over me sitting in that chair is that no one knows what dementia feels like unless they’re experiencing it themselves. Some of the articles I read and the very personal stories from family members that I am very thankful for, were all very helpful in understanding the symptoms and stages of the disorder and what dementia does to loved ones, but…
looking at my father I realized after everything I’d read and heard, I had no earthly idea what he was going through, and neither did anyone else.
A Friend Once Told Me You Can Love Someone Even If You Don’t Like Them
As I sat thinking to myself on the matter, my father in the middle of yet another monologue, suddenly stopped talking and looked right at me. He stared for a moment then winked, something he used to do when I was a child. It had always been his way of saying, “I see you, baby duck.” That’s what he used to call me when I was little: baby duck.
When I was his baby duck he wasn’t my Father… he was my Dad.
A shadow of a smile touched his lips. Practically impossible for him I’m told because of his many strokes and the brain surgery from which he never fully recovered. My heart stopped, “You look just like your sister,” he said. And just as soon as my Dad appeared, he was gone and I was undone. I was little again and it was one of those tiny bits of heaven I remembered from childhood. I pushed aside the hurt and anger and looked at my father for the first time, not as someone I couldn’t get along with, not as someone who blamed me for things that I blamed him right back for, but as a parent, something I could relate to. When I looked at him in that light,
I had to believe he loved me in his way, just as I had always loved him in mine.
I don’t know what it was, delusions of my own perhaps, but for the first time in decades I felt he really saw me and for the first time in my life I truly saw him: A human being, a Dad, a parent that made mistakes - now that’s something I can relate to. I can’t say for certain what it was but something changed. In that brief moment of recognition I felt supported in the decision I’d made years ago to just let go. The hurt, the anger and the blame, there had never been any reason to hold onto those things and I had been right to let them go. Remaining silent on the subject until now might not have been the best decision, although I can’t say I’m sorry for my silence so maybe for the two of us it was exactly the right decision. Stubborn Love.
Maybe he’d forgotten our falling out or maybe it was his way of saying he forgave me? That in the grand scheme of things life is way too short or too important, especially in the end, to waste even a second. I feel pretty sure that those are actually my thoughts and feelings because I have no way of knowing what he was thinking and he had no way to tell me. I’m willing to believe that it was my brain’s way of telling my heart what it wanted to hear. In essence, it was me projecting my hopes onto his actions and thinking to myself that maybe, just maybe, he fought for a moment of clarity to give me a sign when words failed him, to let me know that everything was ok and it always had been. Because that’s what parents do for kids, they let them know that everything is going to be alright. That’s what I like to think, anyway.
“Oh, nothing lasts forever
But the sound of love astounds me every time that it calls…”
- Wonderful Unknown by Ingrid Michaelson
So do I feel that regret played a part in my going? That I regretted what happened between us? No. I’m sorry that it happened, but I don’t regret it. It is a part of our history and a part of who we are as people. We had time to make amends, but for our own personal reasons, we chose not to. Stubborn Love. I think we were to each other all we could be, and that’s ok. It has to be.
In the end, I’m glad I went. I hope that in the moment(s) he recognized me that it made him happy to see me after all these years. I can honestly say I was happy to see him. I don’t know that my visit did anything for him, but it did something for me. It helped me discover yet another facet of life and more about what it means to live it…
Another experience to help me see life for the brilliantly beautiful and deeply flawed gem that it is.
To help me understand that the flaws aren’t always bad, and they’re a part of what makes each life unique. The flaws help us remember that we’re imperfect and we make mistakes, just like my father and I had. When things like this come upon us, when a life comes to an end, the reality that there are no “do-overs” becomes concrete. Some flaws we’re born with and others, like the relationship between my father and I, are like scars we earn in battle that we must learn from so we (hopefully) won’t repeat them. What happened between us is part of the past and because it is too late for us, it cannot be undone.
But like a scar it serves as a reminder to me that I need to be more willing to ask for forgiveness and just as willing to forgive.