July 21st, 2010 - The Talk

I called Mom and Dad as I was driving home earlier this week. Now that I'm back in Los Angeles and across the country from them, I try to call at least once a day for my own peace of mind as well as theirs: I want them to know that I'm still here for them, but I also choose to be invested in their lives, despite the distance.

And that evening, as I drove home, something wonderful happened: Dad picked up the phone and was crystal clear, absolutely clear in a way I'd not heard him in a many months — he was speaking loudly enough so that I could hear him, he was speaking in full sentences, and... he was making sense. To suddenly and unexpectedly have my Dad back, to be able to clearly hold a conversation with him… Well, it was profoundly moving to the point of tears since that rarely happens any more.

That's the good news.

The bad news is that what he discussed with me was heart-breaking. He told me that he and Mom had fought the previous night, after eating dinner with friends. "She yelled and screamed at me for about fifteen minutes; then, she said the thing I've been waiting for her to say, afraid that she would say..."

"What was that, Dad?" I asked.

"She told me that I was the reason that she has cancer. She said I caused it, that she's sick because of me." I felt pain, a deep pain in my gut. The pulse in my neck seemed like a rock concert. My depth perception did that weird thing you see in the movies where the camera is pulled away from the subject while it simultaneously zooms in. The traffic around me morphed into something more like a video game than real life. I took a breath and spoke what was in my heart:

"I'm so sorry, Dad."

"It's not your fault, babe."

"I know it’s not, Dad, but…  Mom sometimes takes out her anger on you and me and others, but: that wasn't nice, it wasn't appropriate and it wasn't true, Dad. You're not to blame for Mom having cancer. And she's not to blame for you having Lewy Body Disease. I’m very upset with her for what she said. I want to say something to her.”

“I would appreciate it if you didn’t,” Dad said. I was rendered speechless for ten seconds. My Dad actually asked if I was still on the line. After all of the things he’d asked me to say to Mom during my six-week visit home — that she should consider therapy, that she needed to have some support group, that she needed to face her fears about Dad’s dying and her own mortality — to have him now request that I not say anything was surprising. And upsetting.

“Well… to be honest, I don’t know if I should have asked for your approval, Dad. Something needs to be said to Mom. That’s not OK what she said to you...” But Dad again requested otherwise and, as he was of clear mind, I told him that I would honor his request. I didn’t want to, but I gave my word, told him that I loved him and we ended the call. When I hung up, I remember thinking that all I wanted was to dishonor Dad's request and find some excuse to talk about what had happened with my Mom. I got my excuse the next morning.

On the way out the door to bike to work (and, yes: some of us do bike to work in Los Angeles), I called Mom to say a quick hello. She was at the doctor’s receiving one of her infusions. I hadn’t remembered that she’d had an appointment. And, since Mom is constitutionally incapable of not picking up her phone when it rings, she answered, sounding tired and weak. This caught me off-guard. But not as much as her almost immediately asking me, “So what did you and Dad talk about last night?”

Here was my excuse. If Dad was upset, I could just tell him that Mom had asked me a direct question and that I’d given her a direct answer. Only… I stalled. I told Mom that I'd just called to say "hi" and that we’d have to talk later since I was heading into work. Which was only partially true. The full truth is that I stalled because I was angry. Really angry. Beyond angry, actually. I was incredulous and fuming and I wanted to read Mom the riot act and say, "Are you fucking KIDDING me? You're blaming your husband because you have cancer? You're screaming at someone who is physically and emotionally defenseless? Fuck you. I don't CARE if you have cancer. Go fuck yourself for saying shit like that to my Dad."

Only saying shit like that to my Mom wasn't going to help. Not at that moment. I wasn’t prepared to have a difficult and emotional conversation while she was in such a weakened state and in a hospital, receiving an infusion of drugs. I needed to cool off, to take some time to think and strategize. Which I did. For about four days. And during that time I thought: would Mom really have told Dad that he was to blame for her cancer? Possibly. Would there be another side to the story that Dad hadn’t mentioned to me? Possibly. Would Mom be upset if I asked her about the incident? Probably.

And so it came to pass that later that week — when we both found the time to chat — that I told Mom how Dad had related their having a fight earlier in the week.

“We absolutely did,” she said.

“Do you want to tell me what happened?” I asked. 

“Well, Dad was being very difficult after dinner. He wouldn’t do what I politely asked him to do and I got very angry with him. And resentful.” I waited for her to continue. She didn’t.

“What was it that you were asking him to do?”

“Basic things. Not sitting in a chair and falling asleep all day, not putting his hands in his food when eating… But he was just being disagreeable and I can’t take it anymore. I got angry and let him know that I couldn’t take it anymore.”

“Did you say anything to Dad that you regret,” I asked, giving her the opportunity to say more.

“No.” I waited for her to continue speaking, but she didn't.

Now lookit: Mom's stubborn, impatient and often navigates life by fear and anxiety, but she's no idiot. She probably already knew the rest of the story that Dad had told me. So, I took a deep breath and asked the $64,000 question. Actually, it was a statement, not a question, although - to my credit - I made it into a question at the very last moment in my own retarded awkwardness by raising my voice at the end of the statement like when a two-year-old asks for a cookie:

“Well...Dad told me that you blamed your having cancer on him?” Mom didn't hesitate for a moment.

“That’s absolutely correct. He’s the reason that I have cancer. All of the years that I’ve been taking care of him and dealing with his illness have made me ill. That’s how I feel. That’s just how I feel. That’s the truth.”

I began stumbling out a response as waves of anger rolled over me.

“Mom, I know that - deep down - you probably don’t feel that...” I stopped myself and re-calculated. “Here’s what I think, Mom: I don’t think that Dad caused your cancer anymore than you caused his Lewy Body Disease. And I think you know that. And I think that maybe... you let your very understandable feelings and frustrations get the best of you in this case."

I waited for a response. There was none. So I continued.

"Mom, Dad's disease makes him sleep almost instantly, he falls over, he needs constant supervision and can't even get himself dressed, undressed or bathed without help. Do you think that maybe you're expecting too much from him right now?"

"I don't think so…"

"Mom…?"

"I don't know." And now the part I'd prepared before hand.

"I don't blame you for getting upset at Dad, Mom, I got upset at Dad while I was home. You saw it yourself. It's incredibly challenging and upsetting to be around him. All of us know that, Mom. All of us. You're allowed to be upset and angry and sad and bitter and feel like you want to punch someone. It makes perfect sense."

"Thank you…" I heard some sniffles on the other end of the line. A chink in the armor had appeared. I made a plea.

"But Mom, you can't say things like that to Dad. It's not fair to him and it's not true. And you know that. And I know that you know that. So, please: if you get upset, maybe… maybe just walk away for a minute until you can cool off? Call me and vent to me, instead. I'm here for you. We all are."

And then the tears came. Someone had understood. Maybe not entirely, maybe not from her unique perspective, but someone had understood and had told her so. And with that understanding, promises. Promises that she'd try, that she'd work on venting to me instead of at Dad, that she'd attempt to see him for what he was, not for what she desperately wanted him to be. And, even though I knew the effort wouldn't last, I told Mom thank you and that I loved her.

And in that moment… I did. I'd said what I'd needed and even managed to connect deeply with Mom in the process. A huge victory. For both of us.

I pulled up to my apartment as we finished talking. I parked and remained in the car, absent-mindedly watching the traffic stream past my window, metallic blood cells winding their way to another part of the city's growing body. In another minute I'd make my way upstairs, be greeted by two hungry and affectionate cats and settle in for the warm July evening. But, for now, I allowed the rhythm of the city to lull me into a sense of peace before leaving the peace of my car.

September 15th, 2010: Dear Mom...

This is the letter I should send to my mother. I won't. Because while it might make me feel better about saying some of things I want to say, it will only cause her - if my mentioning it on the phone is any indication - more anger and rage, something none of us need right now.

----------------------------

dear mom,

i hope that you'll enjoy the marijuana cookies i sent you and use them every day. that medicine - as all of your children will tell you - seems to be very helpful in keeping you in a good mood and out of pain. and i'm glad you got them in time. finding a way to safely send them to you was important.

as the new year begins and the call to be introspective is strongest, i believe it's time that we face a few difficult facts as a family:

first on dad: dad is dying more quickly now. both physically and cognitively. he requires round-the-clock care and assistance which means hiring someone to be awake and available for the overnight shift at home. this will allow you to get more sleep... which you need. getting up throughout the night in order to supervise dad's frequent urination and wandering is having a negative effect on you. i'll talk to pam about the options. but that's only an intermediate step. when dad's physical condition deteriorates to the point of not being able to move without assistance, we'll need to consider putting him into a nursing home. there, hopefully, he can receive more appropriate care in an environment that's already suitable for wheelchairs and handicapped functionality. but that means we really should start doing research on which potential places would be a suitable fit for the family. ignoring these facts now will simply cause more pain later. the time to start exploring options is now.

lastly on you: now is the time for you to engage in some form of therapy. it's not appropriate for you to continue yelling and screaming at your husband and children, mom. it doesn't help dad, it doesn't help you and it makes your kids feel awkward and sad. so please stop stalling, making excuses and blaming me for bringing up the obvious: you deserve the luxury of having a professional to help you cope with your emotions of grief, pain, sadness and anger. your children love you, we want the best for you but we don't like you constantly yelling at us. 

while you've been very successful at handling some of your cancer recovery on your own, you need some help in dealing with your emotions. and there's nothing wrong with that, so don't blame yourself or feel like you've failed: and as we discussed while i was back east this summer, there's nothing wrong with needing help. everyone needs help. everyone including you. and no amount of yelling at me is ever going to change that.

as i promised on the phone today, i will continue to recommend what i feel is right for you and dad at this time. you don't have to agree with me, but i'll still share it with you and hope that you take some of my recommendations.

love,

david

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.

June 24th, 2010: Love Ladies

So here we are in Love Ladies. Yes, Love Ladies. Love Ladies, New Jersey. It’s a small city on Long Beach Island, the island north of Absecon island, where Atlantic City is located. Long Beach Island is The Hamptons for the Jews in Philadelphia who need a summer vacation destination. So that’s where we are. And we're here because Mom and Dad insisted that they continue to be here every weekend this summer as they have for about twenty-five years. And they'd made this decision despite their diseases, despite their unpredictable daily abilities and despite the fact that when I asked Mom who would help to care for her and Dad during the weekends, Mom had said:

“The kids will. They come down every weekend.” I cringed.

My brother and his wife just gave birth to their second child not even a month ago, and their oldest - a three year old girl - was already a handful because of her brains, curiosity and stubbornness. They simply wouldn’t be able to care for their two children and help Mom and Dad. My sister had just started her own corporation and had just begun landing clients and making money which was an incredible goal of hers. Who knew if she’d even be down the shore every weekend with her business at such a crucial juncture...?

So never mind that we’d have eight people sharing a small ranch house; never mind that Mom and Dad haven’t shared a bed for years; never mind that both of them are battling debilitating diseases; never mind that the kids would also like to have an actual getaway themselves and not be forced to spend every weekend caring for their sick parents. Never mind the god-damned, fucking obvious: if the family’s gone down to the Jersey shore during the weekends for the past twenty-five years, then fuckit: this summer wouldn't be any different. Period. No need to think about it more than that. 

Which is why I interceded.

With the help of my dear and amazingly knowledgable friend, Pam, I arranged for a company called Home Instead to provide a home care worker at the shore house every morning, just as we do at Mom and Dad’s house in Philadelphia. Thank God. Thank God for my friend who made the recommendation. Thank God I had the presence of mind to do the research on the company and ask them questions to see if they could handle our situation. Thank God, the company had really capable providers to offer us. It literally made the difference between having a somewhat workable family weekend and a complete and utter disaster of the highest magnitude.

We moved into the shore house: I unpacked the car; we picked up the repaired sails for the old sailboat; I moved both of my parents into the house; we met and interviewed the Home Instead representative who came out to the house to meet with us and assess our situation; I provided them with Mom and Dad’s insurance information; I even took Mom and Dad out for an incredible dinner to celebrate that we made it, despite all of the obstacles... and even got a little drunk drinking some Chimay.

So... here we are in Love Ladies. And I can certainly use some love myself: Mom’s back on her chemotherapy pills after getting a week off and she’s in as foul a mood as I can remember since I’ve been home. Rage seems to be her default coping skill right now. Maybe that will change tomorrow but probably not. 

What I do know is that, tomorrow my sister will arrive in the late afternoon, followed by my brother, his wife and their two children just before bedtime. And then, for seventy-two hours, we’ll have a full house and absolutely no privacy but plenty of baby crying.

What I do know is that the day after that, I’ll help rig up the sailboat with my brother and that, later that night, there’s going to be a full moon. And it will rise like a giant cantaloupe over the Atlantic. And I plan on being outside to watch her rise, the lovely lady that she is.

Love Ladies, indeed. 

June 20th 2010: Tomorrow Is Another Day

I am a good son. I am a devoted son. I am a caring son. I am a thoughtful, forward-thinking, emotionally developed, peaceful, and sensitive son. I am willing to watch illness and decay unfold in front of me. I knowingly came home for an extended period of time to witness my father’s daily decay and my mother’s second round of chemotherapy rip into every aspect of her life. I willingly put my job, my two cats, my theatre company, my artistic pursuits, setting up my new apartment and my friendships in Los Angeles on hold so that I could live in my parents’ home for six weeks to care for them in any way I could.

Nobody can ever take this away from me. But sometimes I forget them myself so I need to remind myself of what I’ve sacrificed and what I’ve accomplished here. And why I came in the first place. I came without hesitation because I knew it was the right thing to do. I came because I knew my parents would need my help and might not have the ability to ask for me to make such a sacrifice. I came because I knew that I’d never regret serving them in this way but that I might regret NOT making this trip to visit with them when I had the opportunity. 

And I made this trip knowing that it would be a defining journey for me, one of the hardest, most challenging, gut-wrenching and potentially rewarding chapters of my own life. I didn’t make this journey because I wanted or needed my parents approval or permission: I made it because I knew how rewarding it might be for them and for me if I trusted myself and made the sacrifice.

What I didn’t understand - and what I couldn’t have predicted - was the grueling, day-to-day hardship that both of my parents face: the constantly changing restrictions on their physical abilities; the anger they have about having to face untimely and unfair diseases; the anger and impatience that they direct at each other as they try to cope with one another’s restrictions and inabilities; and the surprising amounts of anger, impatience and stubbornness they direct at me because I’m the closest care-giver they have. It's because I’m their child that they know it’s safe to yell and scream and bitch and complain to me in ways that they cannot to the insurance-provided home care workers that come into and out of the house every day or to some of their friends. 

My closeness means that I’m a safe target. And I’ve certainly spent some time on the firing line, I’ll be honest.

This is why, no matter who you are, no matter how close or distant you may be emotionally from those for whom you care, no matter how trained you are to handle disease and pain and suffering, you must still take such incredibly good care of yourself. You must take time for yourself each day to unwind and decompress. You must eat healthy foods and exercise and get enough sleep every night and treat yourself well.

And some days I’ve accomplished this long list of self-care items. But some days not. Some days I just don’t have the energy or time to give myself everything I need. I know that. And it’s OK. I just do the best I can and then... tomorrow is another day. 

June 23rd, 2010: Dear God...

Dear God,


Fuck you. Fuck you for what you've done. Especially after what we do for you...


We get on our knees, we pray, we try to do right in this world and by your name and we praise and revere you. We start wars in your name. We bless our children in your name in your houses of worship. We inaugurate our Presidents by putting their hand on one of your Holy Books. We invoke your name at the start of sessions of congress. We make the time in our lives to acknowledge the Blessed Perfection and Peaceful Goodness that are the hallmarks of the All-Knowing and Supreme Father.


And, in return, you denegrate my father. You insult his legacy. You spit in the face of a man who has served your children well, a man who dedicated his life to treating the ill and helping them to regain health. And you're not just taking his body and physical abilities, like his ability to dress himself or his ability to wipe his own ass, or his ability to just get up from a mother-fucking chair.

No, that's not enough for you, God. Because you're a sick fuck. You're taking his mind as well, his ability to know what's going on around him, his ability to cognitively navigate the world. And today, you took his ability to remember that we have steps in the back of our house. And so, when it was time to say goodbye to the cousins who'd come over to visit, he walked out the back door, forgot that there were steps there and then... just tumbled wildly through space.

There were four of us nearby too, so you really planned it out well, you evil fuck. We were close enough to watch everything unfold in that blink of an eye but not close enough to reach out and grab his arm and help him. He fell to the ground on his right hand, hip and knee and as head tumbled forward. Our two tomato plants stopped his head from cracking open on the cement porch. Disgraced. Shamed. Embarrassed. Face literally covered in dirt.


And there he sat, stunned on the ground, in front of his wife, his son, his cousins, and the at-home aide who comes here every day to try and make his life and Mom's more easy. So we all rushed to help him, us puny humans, us limited and imperfect creatures of habit because you didn't, God.


You're a pathetic sham of an illusion. You're a douche bag magician who can't pull off the simplest of card tricks. My father doesn't deserve this undignified, disgusting, degrading decay. Not at all. So fuck you, God. Fuck you for your contempt of a man that served. Fuck you for your ignoring a man who provided for his wife and three children. Fuck you for the disgrace you permit despite our best efforts.


And if this is how you've seen fit to treat a man who's served others for his entire life, it makes me wonder about what your plans are for a selfish prick like me. Because I haven't spent my adult life tending to the sick and trying to heal them. 


A mentor and spiritual advisor suggested that I get on my knees this afternoon and pray after what happened. To open up to you and humble myself and just give it all over to you. I replied, "Why should I pray to the God who's taking my Father's life?"


"Tell him you're angry," my friend responded. "He can handle it." And so I have.


As for your houses of worship, they mean nothing when my own house is in mourning and decay. As for your Righteousness, I don't see it. As for your Grace and Perfection... Fuck you.


Later, this afternoon, when I was cleaning up my Father's urine from the bathroom floor, and from his shoes, and from his pants because he can no longer urinate while standing, I pretended that what I was cleaning up was you, you twisted fuck. Cleaning up the remnants of my faith that you actually matter, that you actually listen and that you actually care.


And then... I tossed you into the toilet with what was left of Dad's piss and flushed.

May 29th, 2010: It All Comes Tumbling Down

There are, in my experience, only a few times in life when something so powerful happens that it immediately snaps you out of your reality and brings you instantly into the present. This evening, one of those singular events happened. Then, a few hours later, another one occurred. That's right Life fans: it was a double-header of mind-jarring reality shifts.


Let's get ready bummmmmmmmmmmmble......!


Part one occurred while we were out for dinner at some incredibly mediocre restaurant chain. I've got my niece on my lap playing with my iPad. And while I'm showing her some awesome Pixar app, I hear a "thump", followed by a bunch of patrons in the restaurant gasping and then Mom starting to yell.


Dad has fallen down.


He's on the floor - limbs sprawled out - and seems absolutely confused as to how he's gotten there. Patrons get up to offer assistance. My brother rushes over. So does his wife's family. Others start calling 911. Dad's knee is bleeding. I've got my niece on my lap and, because she's so engrossed with the Pixar app, I figure: it's better to just keep her occupied and allow the others can attend to Dad. Which they do. And so, helpless, I just watch. A few people help lift him up and get him in a chair. The "restaurant" staff bring over some ice and a band-aid. They look concerned... the fear-of-possible-lawsuit concern.


And Mom - embarrassed, exasperated, concerned, alarmed - begins yelling at Dad. It's not intentional. It's not like she doesn't love Dad. She does. Without question. Hell, she's given up her life to care for him. But in that moment... In that moment, every fear she's ever had about Dad's progressive illness and abilities, every secret prayer she uttered - that, please, God: let no one really notice just how bad Dad's condition really is - all of that rises to the surface and blurts out of her mouth. And, instead of soothing him, she shames and humiliates him.


It's not her finest moment. But I understand. I've been caring for both of them for four days now and I understand.


Mom cleans up Dad's wound. Someone offers to call an ambulance. People are staring at the old, disoriented man now seated in the chair in the middle of the restaurant who just fell down. They have no idea that he's only sixty-seven years old. How could they? How could they know what this man was like in his prime? How could they see how he would carry us on his back, sometimes two at a time? How could they know that he would dig up an entire garden, tilling the soil before planting carrots, beans, tomatoes and more? How would they have any idea that - for years - he would rise at 5:15am in order to get to the hospital by 6am to see his patients for his first rounds and not return home until 6pm to have dinner with his family. They couldn't know that. They couldn't see that. Instead, they just see a frail, old man who needs help.


We calmly leave the restaurant as people escort us out with their stares and concern. Mom alternates between fuming silently and shaming Dad. It's not a pleasant situation as I drive them both to my brother's house. But later, while Mom's upstairs helping to put her grand daughter to sleep, I sit with Dad downstairs. It is one of the only moments so far when just the two of us have had some time together. I ask him how he's feeling. And that's when part two of the double-header happens.


"Embarrassed," he says. "Mom yelled at me."


"I know, Dad. I'm sorry. Mom probably didn't mean it like that."


"I don't want to be a burden," Dad says and starts to cry. "I don't want to be a burden on the family..."


How do you respond to your father when he admits, defeated, that he doesn't want to burden the family he helped to create, raise and educate? I went to my Dad and put my arm around him. I gave him a kiss on his head and I cried with him. And then I lied to his face. "You're not a burden, Dad," I said and I meant it. I really did. Because, to me, falling down one time in a restaurant isn't being a burden. It's an accident.


But I knew better. And so did Dad. And at this stage of his disease, he requires help sitting down and help getting up; he requires help getting into and out of his clothes; he sometimes requires help wiping his ass, cutting his food and frequently understanding what's going on around him. So, yes: that makes him a burden right now.


And it made me a liar. Kind of. But not really. But kind of.


After we'd cried, after I'd re-dressed his wound, I went upstairs and found Mom. I pulled her aside and told her, "Dad's crying. He's very upset about falling down in public and that you raised your voice at him." She begin to protest but I cut her off.


"What you did wasn't nice. At the exact moment when Dad needed your love and support, you shamed and humiliated him in public. Now go downstairs, tell Dad that you love him and wrap your arms around him, Mom. Give him the love he deserves. He'd made a mistake. He didn't fall down intentionally to hurt your feelings. Right now, he needs your support."


She looked at me, looked away for a moment and then walked downstairs to do exactly as I'd requested. And so it goes. We all fall down. Most of us just get back up again. But for those around us who cannot, we try to extend a hand. But sometimes, we forget. And in those moments, it's nice to know that we have others around us to help remember that we're not alone, that we depend on others all day, every day, to help us navigate and survive.


In the end, despite our best efforts, it all comes tumbling down anyway. It's a simple and beautiful truth that unites us all... even if we actively try to forget it.