Monday, January 4, 2010


We are now at a stage where Mom is never going to wake up. Her dependence on her ventilator remains the same as when she was first admitted into the ER at New York Presbyterian Medical Center. Since that night, she has shown no obvious signs that she is interacting with the world anymore. Her body still lives, but as my buddy Mike phrased it, "much of what makes Mom herself has already passed."

We are, therefore, no longer concerned about whether the unexpected presence of visitors might stress Mom. I had, for many months, done my best to defend Mom from all manner of well-intended but clumsy gestures, chief of which was the tendency of some people to try to visit her unannounced. Not only was this disrespectful of our repeatedly stated wishes, it was also very stressful for Mom who, at the beginning of this ordeal, often wanted to disappear instead of being seen. It was primarily Mom's stress that motivated me to set boundaries. Now, however, those boundaries no longer matter.

So the new visitation policy for Mom is simple: if you want to see her and pay your respects before she passes away, if you want to touch her or kiss her or hold her hand one last time, NOW IS THE TIME TO VISIT HER.

Some people have trouble visiting with the dying and/or the loved ones of the dying. Such people feel they won't know what to say, or they're afraid they might burst into uncontrollable tears. Believe me, I've been there, and I'm here to tell you that such worries are rooted in one's own ego. Don't worry about how you'll look and act in front of Mom or us. Those are mere externals-- superficial by nature. If you pass up the opportunity to see Mom merely because you're worried about yourself, then you'll kick yourself later, after she's gone, for not having had the courage to see her one last time. "Goodbye," done face to face, brings a kind of closure that avoidance never can.

Other people may feel that my often-prickly defense of Mom's dignity and tranquility-- especially when it came to my resentment at unannounced visits and my rejection of bogus "cures" proffered by some-- was a sign that I simply didn't want such people around. Not true. All I was doing was enforcing the clear boundaries I had set up. On this blog, during Mom's long period of suffering, I have repeatedly preached the gospel of realism: hope, but not false hope; mindfulness, but not fantasy. Some people, still in denial, tried to offer us superstitious or pseudo-scientific remedies that had nothing to do with Mom's cancer. I, like Mom, am not disposed to suffering fools gladly, so I tended to reject such "kindnesses" rather brusquely and directly. Hogwash by any other name is still hogwash, and even when the potions and spells were offered with kind intentions, I didn't look kindly upon them.

But the rejection of hogwash isn't the rejection of the whole person. We're all capable of saying and doing nonsensical things, and we'll often do such things at exactly the wrong time. For me, if you make a single mistake, you're not persona non grata. If I held everyone to such a strict standard, I'd be a hypocrite, since I myself say and do ridiculous things (more often than I care to admit).

That said, I don't regret the stance I've taken in defending Mom from the slings and arrows of well-intended silliness. Not one bit. I'd do it again. But if you're one of the people who feel stung by my defense of Mom, then-- as is true of the person who's worried about how he'll feel or act when he sees Mom-- I'd suggest putting ego aside. Forget about me; go be with her.

So that's where we are now. Mom is getting ready to leave us, and now is the time for everyone to say their final goodbyes. If you're unable to make the trip to be by her side, I understand. But if you're holding back from visiting Mom for reasons of pride or ego, then you should let those childish notions go and just see her. She doesn't have much time, which means you don't have much time.

Mom's current location (check this blog for updates if/when she's moved either to an institutional hospice or back to our house for homebound hospice):

Walter Reed Medical Center
Building 2, Ward 40, Bed 7

According to the ICU staff we met, Mom is accessible 24 hours a day. There's some debate as to whether there's a limit to the number of people who can be inside her berth at any given time, but we had three visitors at Bed 7 on Sunday: David, Dad, and me.

Depending on when you show up, you might see some or all of our family there. Mom needs your love, but we guys could probably use a few hugs, too. I hope that's not too forward of a request, especially after the above stern, finger-wagging lecture.


1 comment:

Julie said...

I wish I could be there to hug you, and to wish your mom a peaceful journey. Your parents did a remarkable job with a brilliant, unconventional son. You are pretty awesome, you know.

Peace, my friend, for all of you.