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.

I had to help my dad dress this weekend.

 I don't think my heart ever broke more. 

I took the boys to see him Friday evening and when we got there he was in his room in just boxers. I knocked on the door and he answered, and his face was so apprehensive and scared, like he didn't know what to expect. He saw it was me and I saw he had no pants so I said "Hey, we are going to go wait in the dining room, why don't you put on some pants and meet us there?" I corralled the boys to the table (a few feet away) and I heard him calling my name. I went into his room and he was sitting on the edge of the bed. He asked me "I don't know what I am supposed to do here. I need pants or something?"

So I grabbed his pants. They were on the floor, tangled up in his shoes like he had taken his pants off before he took his shoes off.  I untangled everything and helped him get them on. He tried to zip the zipper before he pulled them up and then tried to buckle the belt before he buttoned or zipped them. And he kept asking me what was happening and where were we going. When he stood up, he suddenly grabbed me and put his head on my shoulder and just hugged me. Then he kissed my cheek and said he loved me. And then he said "I was wondering. Will there ever be a time when I won't be in a place like this?"  

And a little part of me died inside.  

There are so many days I just feel like I can't handle this. At all.

Too many feelings

I am so fucking tired of Alzheimer's disease. I fucking hate it. HATE. I just had to sit through a healthy eating course at work, which is fine, but they kept mentioning Alz as something diet could prevent. And frankly, I have done a lot of research, and that's just not true a lot of the time, and it pissed me off in a "why are you blaming the victim here?" kind of way. Dad liked ice cream and so he earned it? Fuck you. (And yeah, I get that's not what they are saying rationally, but irrationally it pissed me off.) I am tired of worrying about whether or not I am going to get it, and put my kids through this bullshit. Or my sisters. I shit you not, I considered staying with Cliff because I was so afraid of that. I still am. Every time I get a word on the tip of my tongue but can't quite get it or forget a street name, I think about it. Every time.  

Looking at places for my dad is killing me. I keep imagining him, at bedtime, wondering why he is there and not at home, looking for my mother, wondering why we left him there.  

I am just so, so angry. And there's no one to be angry AT. That's the hard part.

Thankfulness

Drew

Drew………right now he is caught in this wonderful, poignant place between preschooler and Kid. Almost a kid — occasionally embarassed at hugs and kisses when I drop him at school, starting the eye rolling when I remind him to wash his hands or go to the potty, but still little enough that when I pick him up from school, as soon as I walk out the door to the playground, I hear “MOMMYYYYY!!!!!” and watch him tear across the playground at full speed to jump into my arms with enough force to almost knock me over. I have never been greeted with such joy and fervor in my life, and it is one of the very best moments of every school day. I am thankful for his cleverness (even when it works against me!), his friendliness and socialiability, the way he plays little jokes and then slyly says “Mommy, I was trick-sing you!”. We still lay down together for his bedtime, and my day is not complete until he tells me “I love you, mama, and I will see you in the morningtime”.

Zachary

Zachary……..Zak Attack! Bull in a china shop. No one who meets Zachary fails to be astounded at his sheer strength. He’s small for his age, but never was there a more solid, sturdy kid. He is happy 95% of the time, but lord help you the other 5%, for he will make his displeasure known to all within earshot. After I hear Drew’s goodnights, I eventually settle in for the night with Mr Zachary. He’s a world champion snuggler, and mostly refuses to sleep alone. He wakes up like his father — meaning cranky as hell — but after a drink and a snack he settles into his role as Mr. Happy. His recipe for joy includes snacks and crumbs of attention from Big Brother Drew. Nothing else is required.
I know it’s cliche to say how much you love your kids, and I was thinking last night as Drew and I played a game how much I just *liked* them. I like spending time with them, I like their occasionally silly little games, I like hard hugs and wet kisses and sharing the food off my dinner plate (most of the time). They humble me with their love, and I am beyond grateful to have the opportunity to return it.

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.

This morning, Drew kept asking me for toast and I kept putting him off. I was actually doing it, just slowly along with the 47 million other things I have to do to get us out of the house every morning, but I am sure he felt like I was ignoring him.

He walks up to me, puts his hands on his hips and says “Mommy! I want my toast, please. How many times I have to ask you? I ask you a MILLION times already, but you just not listen.” and he shook his head sadly, like there was no hope for me at all.

Which, lets face it, might be true.

Last Morning

One of the best things about having kids is that they are just funny. I love the way Drew talks. I love the words he mispronounces and the ones he just can’t figure out the meaning to.

He is convinced our neighbors are his “parents”. I do not have the slightest clue WHY he thinks this, but he will not be swayed. Cliff and I are Daddy and Mama, so our roles are obviously defined. But since other people are always telling him he needs to ask his Parents permission to do things, he had to assign that role to someone. I know he is confused about why he needs to ask our neighbors to cross the street or eat a sample of pizza roll at Costco, and I find it mildly disturbing that at 4 he already realizes that his father and I, while lovely, clearly lack the sort of authority and gravitas the label “parents” seems to require.

He either does not understand or cannot say the word “yesterday”. So instead, he says “last morning”. Which is awesome. I don’t know why, but it kills me and I hope he always does it, even when the other kids at Harvard make fun of him. “Hey, how did you do on that pop quiz we had last morning?”

Computer = compudder
Goldfish = goldfishies
raviolis = ollies

When he asks for milk, he has started asking for “a drink called milk”. I don’t know if he thinks I need the clarity or I will throw a Drink Called Battery Acid in the sippy or what, but he always needs a drink. Called milk. Just so you don’t screw it up, mom.