Take Action

Today September 21^st is Alzheimers Action Day. My dad died June 5^th of Alzheimers disease.
I think of him every damn day, and I remember the pain of watching him slip away from us and from himself. I still find myself turning the fact that he is gone over and over in my head, just trying to make sense of how he was here, but now he’s not. All that intelligence and kindness and humor and all those hugs, just gone. I occasionally wake up in the middle of the night and realize, all at once like it is the very first time, that I will never hug my dad again. I am unable to sleep the rest of the night, the magnitude of that thought is just too large and looming to live with.
This is what I wrote for his memorial. It’s so weak a representation of who he was, but I can’t imagine anything I could write that would capture him.

First of all, I want to thank you all for coming. I know this is all a bit unconventional, but you all know my father so that can hardly be surprising. This is the sort of gathering he relished – people he loved in a place he loved, sitting back and enjoying each other, listening to some music, and having a laugh.
I see people here from every phase of my fathers life, and it really defines who he was as a person. That there are people here that he has known since grade school tells me that he was a good and loyal friend, his coworkers show me that he was a hard worker and well respected, and the special people who supported my mother and cared for him at the end of his life show me that even as the facets of his personality rounded and faded, there was something special about my father, some spark of humor and wit and honor and character that no one could fail to recognize or be drawn to. Alzheimers had a particularly specific kind of cruelty for my father, one of the most cerebral people I know, but even that juggernaut could not blunt his charm entirely.
I am here to celebrate my father, but I have to say that my heart is good and truly broken. I wanted to tell you a few stories about dad, but the reality is that I could never narrow it down to just a few. We took stained glass classes together and went on road trips. We learned to make arrowheads and he came to my kids pediatrician appointments. We went to Graceland and he took me to his office so I could see his work. We went to concerts and ball games and sewage treatment plants and Laguna Gloria. Quite simply, my father was always there, always a presence in my life.
When my first son was born I called my dad from the hospital, suddenly terrified of the responsibility looming over me, confident I was going to screw it all up and my dad told me “Julie, the only thing you need to give that baby is peanut butter, some dirt, and love.” Growing up, we all had ample supplies of each, and even when I was furious at my dad for whatever the perceived parental injustice of the day was, I never, ever doubted his love for me. Like most kids, I thoughtlessly took my dad for granted as a child, but as an adult I realize how lucky I am to not only have had a father that I loved and who loved me in return, but a father that I truly liked and who liked me right back.
When I was very young, I was a really horrible sleeper. Late in the night one winter, my dad came to my room and without a word bundled me into my jacket and put me in the car. He drove and drove to the outskirts of Austin, put me on the hood of the car, and told me to look up. There was an amazing meteor shower that night, and we watched the shooting stars together for a good long while, and then he took me home and tucked me back into bed. That was the sort of thing my dad did well – the unexpected, special moments, the random postcard or short story that showed up in the mail, handing you the most perfect gift you never knew you had always wanted.
I will long for my father when I read a great book I want to talk about, hear a Van Morrison song, get frustrated by a math problem of any kind, eat a Theta burger at Huts, or see any of the million places we went to together in Austin. So pretty much always. But especially when I see a shooting star.

Fathers & Mothers

It’s Christmas Eve and I am missing my dad.

Really, the only notable fact there is the Christmas Eve part. I miss my dad every day. Sometimes it’s a fleeting thought that I wish I could talk about a work problem with him, sometimes it’s a pain in my chest, an actual physical pressure that weighs me down and I feel like I can’t breathe through the gravity of it all.

I visited Dad yesterday. The visits are always difficult, of course. Usually because I leave still missing my dad as much as I ever did. One of the hardest things about his Alzheimers for me has been how impossible it seems at times to really connect with him. Mostly he knows who I am, mostly he knows I am Julie, his daughter. But it feels like a shallow kind of knowledge, with all the gravity and history of our relationship somehow untethered from how he defines me. I am Julie, his daughter, but I am not sure he always knows what that means.

Yesterday we walked outside a little, chatted about the usual — the weather, how the boys are doing, how is my mother. It got cold and we went inside and sat on the couch. I made a comment about my grandmother, his mother. And my dad began to cry. To cry. My father. He didn’t understand, he said. He knew he was losing some memory, but he didn’t know why, and it was weird, he said, to hear me talk about his mother. I tried to be calm, to maintain my composure as I thought “Oh my god, oh my god, I upset him, he is upset and it is my fault and I need to figure out a way to fix this right now.” But I couldn’t think of anything that might comfort someone who was, like I was, just missing their parent. So I talked about her some more, and eventually he started talking about his daughters. How much he loved them, how much fun they were. He turned to me and looked at me and took my hand and said “I really love you, Julie.” And I felt like he was really all THERE, for that moment, and I began to cry, too. For everything that Alzheimers is slowly taking away. Not from me so much, but from my father. He misses us, too. He is losing us just as surely as we are losing him. There is nothing any of us can do, I thought, there is no stopping this horrible descent, but for now, we are here and that is all there is.

I put my head on his shoulder, and we clasped hands, and we cried together.

On the tip of my tongue........

The other day on the elevator, I was telling my sister a story and I could NOT remember the name of a person I was talking about. It was elusive— just right there, but I couldn’t get to that name.
Stuff like that scares the bejesus out of me.

Mom and dad had kids young. When dad was diagnosed, I was in my mid thirties. If I were to end up in the same boat, Zak and Drew would be in their young twenties. That’s just too young to have to deal with an ailing parent. Too, too young.

Shortly after Dad was diagnosed, he told my mother that she’d be relieved to know he had decided against suicide. I don’t know how serious he was, but I do know he wouldn’t have mentioned it unless he had — however briefly — considered it. It made me really, really angry. How dare he even think of making a decision like that? But every time I forget to do something or space out on a name, I think about that conversation, and I understand just a little. I am established in my life, and this sucks. I cannot imagine if the boys were in college and they got that news about me.

There are some types of early onset Alzheimers that are genetically influenced in a way that you can get tested to see if you can get it. They have not said that Dad has that kind, and given that no one in his family before him had AD, I doubt it is. But I do wonder what I would do if it was. Would I want to know? Probably not really. Would I find out? Yeah, I think I would. Not so much for myself, but so that I could be sure to wring every single bit of pleasure out of my boys now, so that I could set things up for them so they didn’t have to worry about the mundane details of taking care of me.

Even now, I sometimes hug Drew or kiss Zachary, overcome by the desire to hug him just a little harder or kiss just one more time, and think “I want to REMEMBER this.” I want to remember it always. Forever. The smell of their hair, their sturdy arms snuggling me. It reminds me that this damn disease doesn’t only steal loved ones away from us, but we leave them as well. One day my dad might not know who I am. I think about how painful that will be. For both of us.

I wish my dad had cancer.

I know, right?? What a horrible, horrible thing to say.

The whole time Cliff was fighting cancer, all the doctors visits and worrying and surgeries and medications, I thought over and over and over again that I would never, not in a million years, wish that on anyone. Even my worst enemies. It’s not a statement I make lightly.

But I really wish my dad had cancer. Instead, he has Alzheimers.

Cancer is a fightable disease. Doctors will pat you on the back, give you odds, tell you with confidence (even if it’s feigned) “We are going to throw everything we have at this and you can beat it!” With Alzheimers, it’s all about “slowing things down” and discussion about “the progression”, but there’s no fighting spirit or positive attitude called for. Because it doesn’t matter. You can’t beat it. It wins the battle before you even have a chance to marshall the troops.

Cancer comes with a two part diagnoses: The Bummer : “The test results are back, and it’s cancer.” and The Hope: “…….here’s our plan of attack“. Alzheimers diagnoses are different. They are more of the “It sucks and I know it sucks and unfortunately you’d probably better become accustomed to it sucking, because soon it will suck even worse.” variety.

Cancer is long periods of nothing punctuated by shorter periods of intense need. People respond pretty well to that. People can organize meal delivery, they can drop off a casserole, they can mow your lawn while someone recovers from surgery. Alzheimers never stops. It never takes a break. It just gets worse.

Of all the things to befall my father in particular, Alzheimers has a specific sort of cruelty. I have never known a man more cerebral than my father, a man who lived inside his head more. Of all the words anyone ever used to describe my dad, I imagine “capable” probably took top prize. But he’s not capable anymore.

He was diagnosed right after my son was born. At the time, his symptoms were mostly of the Party Foul variety. The same story, told over and over, forgetting to meet his daughters at the movies, losing things. It stayed that way for a long time. I actually began to doubt the timelines we’d been given. Yeah, dad was forgetful. Sure, you had to check the stove burners before he left the house, make sure he had his phone, call him both the night before you met him for lunch and again a half hour before you were going to pick him up. He’d get irrationally and disproportionately angry all of a sudden, but not often. But it was manageable. In the past year, though, the disease has picked up some speed, and it’s hard to keep up, like dribbling a soccer ball down a hill. You have control for a second, and then you lose it, careening down the hill far too fast, unable to steer, hoping you catch up.

I miss my dad. My kids won’t know him like I do, or even like my nieces do, or even like they do. Drew and Zachary have totally different grandfathers in many ways.

We took my dad to see Van Morrison in concert last week. Van is one of his favorites, and I felt particularly lucky that he was in town and playing now, while we could go and enjoy it. I asked my parents if I could take their picture. Dad was goofing off, making faces, and I chided him a little bit, and he laughed just as I snapped the picture. I love this picture. It’s my ‘real’ dad.