July 15th, 2010: The Tour de France

Dad's doctor told him today that he'd need to have a walker. Not a cane as he'd hoped, but a walker, a full-on walker. This immediately makes him a visual target. This immediately says to those who see him, "Here is a man who cannot stand on his own. Here is an old man. Here is a man who is dying."


And so, at the age of 67, Dad will now appear more like he's 87.


If I'm honest, I feel this way about him already: we have to dress and undress him, we have to bathe him, we have to help him stand up and sit down, we have to wipe his ass sometimes and we often have to repeat ourselves and explain to him what's going on around him. These are the hallmarks of much older people, not someone in his 60's, not someone who used to be so vital, not... my Dad.


In truth, Dad probably does need a walker. He's just not stable on his legs anymore: in the short period that I was home, he fell four times. Twice he hit the floor and hurt himself, once we caught him before he fell and the fourth time, somehow, he managed to catch himself. A cane - held on one side of the body with only one hand - won't really provide the support that he needs.


So Dad will get measured for a walker and will receive training on how to use it. When I spoke with him this week he said simply, "It wasn't what I wanted. I wanted a cane. But I guess I need it. So I'll try it." And that's why I so deeply respect my father: because he usually doesn't try to hide or dumb down his his disease. Maybe he came to that mentality because he practiced medicine for thirty years and, for him, dying is as natural as living. I don't know. What I can say is that the man who used to walk around the house naked still does without shame for what his body truly is: a machine. And as Dad's machine slowly fails, he's no more ashamed about his body now than he was thirty years ago.


But maybe I am.


And maybe others will be when they see him struggling. And I'm sure that Mom will be more embarrassed to be with him in public, even more than she already is. What person wants to spend time fighting cancer by spending her days and nights watching her spouse slowly disintegrate before her eyes, both physically and cognitively?


There's no winner. We just keep plodding along. It's like the Tour de France, only worse: the race doesn't end after a month...

July 7th, 2010: A Small & Frail Goodbye

I don’t know how some people cope with pain. Or with separation. Or with sickness. Or with suffering. Or with saying goodbye. Or - God forbid - with all of those things simultaneously. I just don’t know. I mostly just weep when I need to, sometimes out loud. And I did a lot of that today.

I got up and wept. I packed up my clothes up and wept. I watched my Dad eat breakfast and not talk to me because he was too fucking occupied with Good Morning America and wept. I watched Mom make her kreplach and explain the recipe to me and I wept as I scanned the original, written in her handwriting, an unbroken chain of Jewish food being passed down from one generation to another. 

On the one hand, I don't know what the big deal is. I've been home to visit many times before. All I’m doing is going back to my own life, the same as I've done countless times before. All I’m doing is returning to the life I’ve built for myself during the past eighteen years in Los Angeles. All I’m doing is simply going back to what I left six weeks ago. That was part of the deal, so my return is totally expected.

On the other hand, I just don’t WANT to. After eighteen years of living 2500 miles away so that I could form some sense of self without being cramped, micro-managed or judged, I suddenly find myself wanting to stay closer to my parents so that I can help them, be there for them and care for them… and maybe fix a few more things.

But as the day wore on, despite my weeping, I understood that there would be no fixing an unfixable situation: I cannot cure Mom’s cancer, I cannot cure Dad’s Lewy Body Dementia, I can’t even cure the ways in which their relationship is still dysfunctional. All I can do — all any of us can ever do — is to simply help where and when we can: to fix things that can be mended, to be useful, to volunteer, to lead by example, to promote patience and to try to demonstrate a better way. And these are things that I’ve done many times over on this trip. And I'm proud of that in a very deep way because I did so in the face of people who deeply hurt me previously.

This means that the only real metric I have for determining how I feel about this trip is... how I feel about this trip. And how I feel is accomplished.  I helped re-arrange the living room furniture for both Mom and Dad in the likely event that they’ll need more room for navigating; I cleaned out the basement and created a very nice room for any aide that would need to live with Mom and Dad on a more full-time basis; I secured aides for them for the weekends when they go down the shore this summer; I began difficult conversations with Mom and Dad about nursing homes, physical abilities and future needs; I suggested that Mom use her pot brownies when her more toxic medications weren’t working. Then, once she got use to the idea, we both got high together and saw Toy Story 3; I cooked and cleaned for them most evenings; I chauffeured them back and forth to New Jersey no less than four times; I took them out for the occasional fabulous meal; I ran errands for them; I bathed Dad, I wiped his ass, I picked him up when he fell, I dressed and undressed him, and I tucked him into bed most nights; I sat with Mom at the hospital for all of her appointments and exams and infusions; and I tried - whenever possible - to help them talk to one another and act as a kind of facilitator or counselor. Anything I could do to keep a dialogue going between the two of them.

With Mom blaming her cancer on Dad and with Dad unwilling or unable to tell Mom how he feels for fear of reprisal, it was difficult to get them to talk to one another. Mom would want to walk away (and sometimes did) and Dad would shut down and fall asleep, half out of manipulation, half out of sheer emotional fatigue. And yet...

There’s the lingering feeling - however wrong it may be - that I could’ve done more. I wish I could have somehow fixed their bad relationship just by being there and being me which, of course, is absurd. I can’t judge this trip by whether or not Mom’s cancer is any better today than it was six weeks ago. Or by whether or not Dad's physical and cognitive abilities have changed. Or by how much better Mom and Dad are treating one another. Because those were never things in my control to begin with. Because after my efforts, after I try to make a difference in the ways which I can… in the end, I must let go and simply allow the universe to work its course.

So I ended as I’d begun — by just doing more of what I’d come to do: I glued foam bumpers on the stairway leading down to the basement so no one would bump their head; I took Dad over to his occupational therapy and spoke with his therapist there about private, at-home lessons to focus on his daily essentials or ADL’s: specifically dressing and undressing himself; and I spoke with Mom about the past six weeks. She was, she said, very grateful for all I’d done. When I’d tried to explain to her the absurdity of wanting to make her cancer go away, she just cried with me and told me how absurd that was. We cried together, but she emphasized how much I got done.

When Dad got home, we sat for a few minutes and talked. I know he knew that today was my last day but his emotions didn’t seem to register that today was any different than any other day. Perhaps, for him, it wasn’t. After all, his life is so structured and managed and manipulated because of his constant need for assistance that today probably wasn’t all that different. But for me it was. And when I tucked him in for his nap, I told him that I loved him and that I’d see him soon, probably in a few months, when I come back home for the Jewish holidays. Even as I said the words “in two months” it just seemed like an eternity to me. But Dad was out within seconds, body twitching and eyes moving beneath his closed lids and so what might have been a teary goodbye was more like any other moment with him while I was at home: simple, brief and somewhat detached. Perhaps it’s better that way, given the fact that I’d just cried hysterically on his chest only a few evenings previously.

But when it was time to leave, I couldn’t really hold it together. I began crying even just to say “thank you” to Frederick, the man from Ghana who is my father’s aide and who clearly likes him a lot and treats him with patience and gentleness. Even to say goodbye to him, I cried. Because I know that - to a large extent - Dad’s day-to-day care is in his hands. Such is modern life: a man I barely know from another country is my Dad’s protector and keeper. And now, he'll be working even more hours so that Mom can really focus on healing the best that she can.

And by the time I got to say goodbye to Mom in the foyer, I leaned over to give her a hug and tell her that I love her and that it was hard for me to go. She was incredibly frail and small in my arms. I felt like a giant stooping down to hug a child. Only it was my Mother. And we cried together, me more than her. She cried too but put on a brave face as she always does. Frederick helped me outside with my bags and I walked to the car with Mom and Tanya. After the car was loaded, I gave Mom one last goodbye.

“Take care of Dad,” I said. I meant it as a favor. I meant it as a deep and personal favor: to please stop bickering and to love him no matter what. And to give him that consideration and care that any devoted husband would want and need from his wife after forty-three years of marriage. She laughed out loud, almost choking on her gum.

“I can’t help but laugh,” she said, “Because I have no choice.” She’d misunderstood me so vastly that I didn’t bother to explain myself. So instead I simply said:

“Take care of yourself too, Mom: that’s the other part of the equation. Take care of Dad but you have to take care of yourself, ok?”

She nodded her head, gave me a hug and walked inside. I got in the car and closed the door. Tanya drove me to the airport and provided me with a packed lunch and some much needed conversation to help me center myself and prepare to fly home.

And now here I am, at 36,000 feet. Outside the window to my left, the sun has gone down and a brilliant stripe of deep red and orange is layered onto the blackness of the earth below me. Lights from the cities we fly over appear like stars on the ground as we over cross them, and above, the sky is an impossible and deep blue. 

In about an hour, we’ll land in Los Angeles and my friend Julie will pick me up and take me to my car in the Palisades where my other friend Chris has kept it for me. One network of friends sees me off; another greets me.

Tonight, I will sleep in my own bed for the first time in six weeks along with my cats. And tomorrow... well, I don’t want to think about tomorrow just now. Or unpacking. Or resuming my life, my responsibilities or my job. Right now, I just want to enjoy these last few minutes of my trip and remind myself not just of what I’ve done, but how I’ve done it: not perfectly, not without losing my patience or temper at points, but with as much honor, humility, kindness and patience as I could give the two people who raised me, fed me and educated me.

I went home to honor my Mother and Father and, by and large, I succeeded.

June 15th, 2010 - The One Time of Day

Regardless of what’s happened during the course of the day, no matter how much good or bad there’s been, there is one, tender moment I have come to look forward to more than others: the time when I help Dad get ready for bed. And I know he looks forward to it as well. That’s because he shuffles around in his slippers until he finds me and then... just stands there smiling.


“You ready for bed, Dad?”


“You wanna help me...?” It’s more of a statement than a question, but still: who says no when their Dad asks to be tucked in? Answer: not me.


So I get up, accompany him to the bathroom and we go down the checklist: make sure he’s taken his medicine, brushed his teeth, taken a piss, removed his rings, eased off his slippers, socks and - finally - his undershirt. When that’s all done, I pull back the covers, Dad sits down and then - with what seems an unreasonably large effort - roles back and swings his legs up over the edge of the bed. He usually winds up in a half-fetal, half-diagonal position with his head in the middle of the pillows but his legs hanging off the side of the bed. So I lift his legs and pull them into the center of the bed to straighten him. He’s a big man, so his legs are heavy. Sometimes, he’s too far down on the bed and his feet are hanging off after I straighten him, so I have to go up on the bed with him and lift him up and back onto the pillows. That’s difficult to do, I won’t lie.


But all of this makes him smile. He likes the attention. He likes ending the day with his loved ones around him, present during the transition into his other world, his dream world: the world where his body and mind work flawlessly and his deceased friends and family are still present and - from what he tells us - quite active.


Then, I swing the comforter back over him in one wave motion which I know he likes. I don’t know why he likes it, but, for some odd reason, he giggles every time I swing the comforter over him like that, so I’ve just kept doing it that way. Sometimes, I’ll swing the comforter over his face too so that he can’t see. And the I’ll innocently ask: “Is that OK? Is that perfect? Is that the way you wanted it...?” And he’ll laugh, say, “Stop it...” and I pull the comforter back down to a more workable position.


Finally, I sit down next to him on the edge of the bed. Sometimes, I put my hand up on his chest, over his heart and rub the skin there. Sometimes I make a joke out of it and push lightly up and down on his chest until he bounces like a basketball on the bed. That either makes him laugh or annoys the shit out of him. Either way, if I’m lucky, I get about sixty seconds with him before he falls asleep. And, during that precious window, unfiltered thoughts flow from him:


"That was the strangest day of my entire marriage," he said one night, and it was true. Mom had ignored us both that day due to her anger and pain.


"I don't know why we have to yell and scream so much when we talk to one another," he said another night, reflecting on the arguments we'd had at the dinner table.


Mostly, I just listen. Because if I take the time to respond, he's asleep before he can answer. Not just lightly asleep either, but deeply entrenched into another consciousness, limbs twitching and shaking as dreamtime takes over him. I wish I could fall asleep that quickly and that deeply.


And then, it is over. And the one time of day I have with Dad that is most precious and tender has passed. In a moment, I'll walk down the hall to say good night to Mom in a similar fashion. But, for now, I look down at the old man in the bed and try to remember who this man is. And, more importantly, who he was.


My father is still very much alive, his chest rising and falling as he breathes. But my Dad - the man I used to rely on - died a while ago. I give him a kiss and shut off the light on his end table before leaving the room.

July 2nd, 2010: Overheard in the Car

So we're driving down the Jersey shore today and Mom asks me to put on some music. This request is a trap: it's no different than when a woman asks if she looks fat in a particular pair of pants. So I put on Sting. Because Sting is the musical equivalent of "not-being-offensive". And then Dad says:


"Hey... It's Styx!"


"Who?"


"Styx... The singer: Styx. We saw him on Broadway..."


"You did see him on Broadway, Dad. But his name's not 'Styx'..."


"No? But we saw him in 'Three Penny Opera'."


"That's true, but his name's not—"


"It's Sting!" Mom interrupted, yelling. "It's Sting, not Styx!!"


"That's right," I said more calmly. "His name is 'Sting'."


"Of course," Dad said, nodding his head. It was Sting and not Styx. Of course! Those two bands are hardly alike at all! Duh.