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.

June 18th, 2010: It All Went to Pot

Today, Mom and I both ate a centimeter-wide cube of some pot brownies and then - Dad in tow - watched Toy Story 3 in a theatre full of kids at 4:20pm. I fucking love Pixar. Seriously. Those folks are an American treasure and flat out masters of their craft. So it is with absolute honesty that I can tell you: nothing says, "I'm a grown man" like crying at a kids' movie in front of your folks. Enough that your Mom has to hand you tissues as the credits roll. Honestly, if you've seen that movie and sat through the ending without crying... you're not human; you're an alien from Dagoba.

When we left the theatre and drove home, it was the magic hour — there was golden sunlight bathing everything we drove past in the most perfect way imaginable. Almost as moving as the film we'd just seen, we drove past a delightful series of classic, East-coast Summer evening vignettes: folks out mowing the front lawn, moms out with baby strollers for a walk, joggers out exercising by the park, horses on the nearby farm all out by the main intersection so you could see them playing with each other, jostling, kicking up dust into the sunlight as they bucked and jumped around one another. The dust rained down on them in the evening light like gold particles.

It's was kind of night when you roll down the windows, breathe deeply of the fresh cut grass and you can almost hear the sound of the ice-cream truck around every corner. 

And when we got home a surprise: Mom had saved some of her kreplachs from Rosh Hashannah and whipped up an awesome batch of soup for dinner with fresh veggies for the dumplings. Mom's soup is one of the things I'm going to miss when she's gone and I told her that. I wasn't trying to be morbid and she didn't take it that way. I just wanted to let her know that I love her soup that much. And that I hope I find a wife and have kids while she's still alive so that they, too, can taste her soup. And I told her that as well. And I told her because I wanted her to know. And she liked that. And she played with my hair affectionately to let me know. And it was a wonderful moment for a woman who's not normally affectionate... and for her son who usually is. I give my Mom credit for stepping outside of the box today. It's hard for anyone to do that, but I think it's harder when there's so much disease in your body and in your home...

So yes: today it all went to pot. But in the very best way possible. Tomorrow my sister arrives for a visit from NYC so we'll all have some time together. Next weekend: we're off to the Jersey Shore and my brother's family will join us. And we'll have a ridiculous, wild and hysterical circus for a few days and nights. 

May 28th, 2010: The Newest Arrival

The reason we've come to god-forsaken New Jersey in the first place is because my brother and his wife were due to deliver their second child via c-section this morning. To be honest, given the challenging reasons I've traveled home for six weeks, knowing that I'd start off my journey by witnessing this newest arrival was incredibly inspiring. And the little guy didn't disappoint, he just jumped the gun a bit early is all. Although we'd planned to get to the hospital this morning at around 8am for the surgery, my sister-in-law's water broke last night at about 11:30pm.

...about fifteen minutes after Mom and I had each taken a sleeping pill.

So while my brother went off to the hospital with his wife and in-laws, Mom, Dad and myself stayed in the hotel, got some sleep and shuttled off to the delivery unit this morning around 10am. Ny nephew arrived early this morning at 1:59am, tipping the scales at 7lbs, 7oz and has more hair on his head than some of my friends (sorry, Stuart and Wyatt, but it's true). My brother and his wife are very tired but doing fine and just thrilled that their newest baby is healthy.


Holding a newly born infant is an incredible experience. They are soooo tiny and have perfectly formed lips and fingernails and ears and toes and they smell like vanilla cake with yummy frosting and they taste just like rainbows and honey. Or maybe I'm just really excited to meet my first nephew. I spent most of that first visit snapping photos of him along with the other members of the family.

New life: it ushers in a breath of fresh air, a ray of hope, another reason to live, and a cause for celebration at a time when celebration is needed most.


So, to my nephew, the newest arrival: thank you for arriving when you did. Like all good comedians, you've already started to master that most important concept of delivery: timing.


Love,
Uncle David

June 10th, 2010: It All Comes Up Eventually

I was awoken this morning after only five hours of sleep. I'd forgotten that Mom's infusion is today. Infusions of medicine happen intraveneously (via IV) and happen about once every three weeks for Mom. Today's the day. And I went to bed too late and forgot about it. So it goes. My brain's been overwhelmed since I've been home. I can forgive that. Of course, I got up, did my morning meditation and went upstairs to have a quick breakfast.


That's when Mom told me that the vomiting had begun. What else could I do? I gave her a hug and off we went to Fox Chase Cancer Center for her infusion. After a cup of coffee and reading the god-awful news on today's sports page, I was actually starting to feel half-human. We were in the lobby of the center for not even 15 minutes before Mom had to vomit again.


Off she ran to the bathroom. I got up and got her a cup of tea so she'd have something comforting when she got back. But the tea didn't stay down too long. There, in her seat in the lobby, Mom began vomiting again. She'd brought a plastic bag to her chair — I have no idea how she'd thought of that — and pressed her face into it. I got her a trash can and, when she'd finished, went back into the infusion room to ask them to please expedite her. The cancer center prides itself in all of its commercials for excellent care and service, but having to wait an hour each time we've gone there speaks another story entirely.

But - miracle of miracles - they moved mom back into the infusion room and started to set her up.  So, here I sit, next to Mom, in a room full of cancer patients as saline, then Benedryl, then Zometa and then Avastin are all pumped into a vein in her right arm.


And I wish there were something I could do to stop this awful nonsense. But I cannot. All I can do is be here, let her know that I am here no matter what and then, where and when I can, take good care of myself to keep myself as healthy as possible for her and Dad.


I continue to fall down in that regard, but I continue to get back up. I feel like a boxer who's committed to going the distance: I know I'm gonna get punched. In the face. Repeatedly. But I also know that I'll be fine and will pull myself back up, bloody or not.


Now's not the time to give up. Not on her and not on me.

May 27th, 2010: The Set Up

We've been in suburban New Jersey with it's bountiful strip malls and for either one day or one week now. I can't really tell, but that's precisely the magic of New Jersey, isn't it?


Leaving my life, my job, my city, my structure, my schedule, my cats and my friends all behind has stunned my system. I guess that's natural. The real challenge is that there wasn't a gradual shift: the other day, I was at home in Los Angeles and, the very next day, I'm suddenly caring for two parents all day long, sometimes in awkwardly intimate ways. It's shocking: I'm not sleeping well, I'm agitated and I'm struggling to balance helping Mom and Dad when they need it and still take care of myself. There's a learning curve here... I don't know the specifics of what they need or when they need it.


As it turns out, Mom can handle her basic needs just fine. She's just in a lot of discomfort and fatigue as a result of the radiation treatment on her upper spine that just ended. That radiation was performed for ten minutes every day for three weeks and was focused on her spine, to prevent the cancer from entering her spinal column. In other words, the core column of mom's central nervous system was radiated daily for three weeks.


Tired, you say? You have no idea.


Dad, however, requires constant attention. He needs help getting dressed and undressed, sitting down and getting up, getting into and out of the car, cutting his food, getting onto and off the toilet, being bathed and, on occasion, having his ass wiped. It is a humbling and emotional experience to have to wipe your father's ass and it forces you to realize that time and life are not forever.


Dad is like a three-year-old child: he doesn't make much sense when he talks, he loves eating dessert whenever he can get away with it, and he walks around burping and farting without thinking twice about it. His two favorite topics of discussion are what he'd like to be eating at the next meal and what just happened in the bathroom.


Because Mom is ill and in pain, her patience is thin. I understand. I don't judge her for that. When you're going through cancer treatments like radiation and chemotherapy, having to also monitor your husband of 43 years as if he's a small child grows tiring really, really fast. Not surprisingly, Mom and Dad bicker a lot and even more so when they travel and share such close quarters.


And so, today, I'd just like to start my gratitude list with the fact that while we're here in New Jersey, they actually got me my own hotel room in the hotel where we're holed up so I can have a smidgeon of privacy and downtime.


Thank you, Jesus. And that's coming from a Jew...

May 26th, 2010: And So It Begins

After about five weeks of preparation to make this journey possible, I have left Los Angeles today and arrived in Philadelphia. I have come here to help take care of my two ailing parents.

Dad is slowly dying from Lewy Body Disease, something most people have never heard of when I mention it. But that's ok. In short, it's like having Alzheimer's and Parkinson's disease, so I'm fond of calling it "the peanut butter and jelly of senility". But I only say that to make me laugh. The joke doesn't change how fucking awful it is to watch your own father deteriorate before your eyes, but at least it helps me chuckle darkly. Every little bit helps.

Mom is battling breast cancer. It started about three or so years ago when, a series of small lumps were found in one of mom's boobs. Rather than pull out each lump, she elected to have a mastectomy. Then radiation. Then chemotherapy. That was topped off by having an implant surgically inserted where her real breast had been so she would - at the very least - look symmetrical. And, gosh darnit: all of it worked. Mom was doing great and getting a clean bill of health.


For a while.


Then, about six weeks ago, during a check-up to which I was invited, Mom was given the news: her cancer has metastasized, or spread. And it had done so dramatically, spreading to her liver, both lungs, and all of the bones in her upper body from her skull to her spine to her hips. This is known as Stage IV cancer and although it's not a death sentence, it's awful close. The average survival rate with cancer like this is somewhere between 18-24 months. More recent data says mom has a 27% chance of lasting five years.


But her doctor's didn't tell Mom this. Instead, when they broke the news to her, Mom asked them a simple and direct question: "Should I be making long-term plans...?". Her doctor told her, "Oh yes: absolutely!" Dr. Goldstein spoke of how the radiation and chemotherapy Mom now required would help in this way and that and tra-la-la, isn't everything so nice and bright and chipper?!

I understand not wishing to convince a patient into believing that death is certain. I get it. And I understand the desire to help keep a patient optimistic and positive. But I don't understand lying or omitting the truth when a patient with a potentially terminal disease asks you a direct question about their long term survival. If I were Mom's doctor, I'd have gotten quiet, told the truth, been humble and then help her to be as positive as she could in order to fight the disease and become a survivor.

So fuck you, Doctor: you're a woman, you're an oncologist, and you know better. If it makes you uncomfortable to tell the truth to someone who might have a terminal disease, then maybe you should have thought about that shit before you decided to become a fucking cancer doctor, you know?

I flew home to Los Angeles a few days later, decided that I needed to be at home to be with both of my parents and assist in any way I could during this process. I didn't hesitate for a moment. That was the weird part. I just knew this is what I needed to do. So I put in the paperwork to take advantage of the Family Medical Leave Act, got a cat sitter, parked my car in a friend's driveway, arranged for mail and... five weeks later, here I am.

I am scared. I am nervous. I am hopeful. And I am here to help. I am willing to take care of myself while I'm here and I hope that remember to do so. There is a lot to be done. Tonight, I sleep on the pull out sofa and tomorrow I drive us all up to New Jersey. The following morning, my brother and his wife will welcome their newest child into the world via c-section. It will be good to start off this journey with some new life, new blood and new excitement.