January 2012

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It’s become a cliche, that title from Hilary Clinton’s book on how children are successfully raised. But, as it has turned out for me, the kernel of truth that’s at the heart of this (and most other) cliches has been proven to be just as applicable to the process of taking care of an aging parent. Because, while it may appear to an outsider that – as Dad’s only child within a couple thousand miles, give or take – I’m managing this situation all on my own, this evening has proven that assumption to be completely false.

You see, Dad turned 90 today, and as this date began looming while Dad was still in the hospital a couple weeks ago, I had absolutely no clue what to do to celebrate the occasion. I was too wrapped up in dealing with doctors and the rehab facility, making sure his bills were all current, and mustering what concentration I could to keeping myself on track with my own clients’ deadlines. As many caregivers might tell you, sometimes expressing “care” can be the hardest part of the caregiving job. It’s that whole forest/trees conundrum: one can get so wrapped up in dealing with the medical diagnoses, prescriptions and insurance bureaucracy that the person at the heart of it all – your parent or spouse or favorite uncle or very best friend – becomes an obstacle, instead of the point of all this sturm und drang.

As much as I hate to admit it, Dad’s birthday had become an obstacle. The voices in my head? They were all, “Crap, now I have to deal with a birthday? Like, the rehab authorization and whether or not there will be a male nursing-wing bed available when the insurance company cuts him off from rehab isn’t enough?” Those voices can build up, one on top of the other, until, before you know it, there’s a wall of internal sound separating you from that person whose care, supposedly, is at the heart of the entire experience.

This is where that village can come in, because a wall built up by any one person’s voices is pretty much toast in the face of a village-worth of voices determined to pay absolutely no attention to whatever structure that sole individual has built up in his/her head. This reality is how my father got a birthday party this evening, complete with homemade prime rib, mashed potatoes, green beans, pecan pie – and live musical entertainment.

Since moving to this little town sited smack-dab in the middle of the 70-mile-long spit of land called Cape Cod, I have found a village. When Dad moved in with me four years ago, he became an equal citizen with me among this group of people whom I now rank among my closest friends. When two of those friends discovered that Dad was within two weeks of marking the beginning of his tenth decade, all my wall-building internal voices didn’t stand a chance.

So, tonight, I wheeled Dad into a little activity room on the first floor of the rehab facility’s nursing wing that had been transformed into celebration central. O.k., it still looked like a rehab center activity room, but there were table cloths and real china, and a magnificent prime rib had a starring role, with all the fixings surrounding the 11 lb. roast. One of our best local singers was filling the room with “New York, New York,” backed up by a young keyboardist on his electric piano. When the main course was over, Dad blew out the candles on the pecan pie he’d requested and even sang along a bit to some of the old standards filling the room – he was quite a crooner in his day. “That was a wonderful evening,” he said, as I wheeled him back up to his bed.

Caregiving can be a very lonely job. But I know I, at least, can sometimes make the job even lonelier than it needs to be, by not recognizing the village-worth of kindness that often surrounds me. Because I do so much, I feel I should do it all, I think. But with that thought process, I only add bricks to an unnecessary wall. Thank you to those fellow villagers who refused to accept such a wall existed and gave to cheer to a father and son who sometimes have trouble giving cheer to each other these days.


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So, those of you in a similar situation to mine – or those that have been – what do/did you do when you feel/felt you’ve just reached maxed-out? And I mean seriously maxed out. Dad is about to be shifted, yet again, from hospital back to rehab. In the next day or so, I’ll be back to living life between weekly insurance company rehab authorizations and tracking down male obituaries to see where an open nursing home bed might exist once the current rehab stint runs out – on top of a respectably busy freelance work schedule filled with clients who might be sympathetic but still need me to meet their deadlines. And all I want to do is curl up on the sofa, with “The Borgias” OnDemand and a pitcher of vodka gimlets.

Dad went into the hospital a week ago because of fluid-buildup complications in his lungs related to his congestive heart failure. Now, mind you, I’d been nagging the rehab center nursing staff (and it’s a good facility, really), because he’d gained 20 lbs. in two weeks. In their mind, since he’d come to them so depleted following the colostomy – and because, as a result, they’d been plying him with appetite enhancing drugs and anti-depressants – this just was a sign that the drugs were doing their job. Well, in the last week, he’s peed that 20 lbs. right out his catheter. Keeping both his kidneys and heart happy means walking such a tightrope that I don’t see how it’s possible to keep everything balanced. So, all I see is a return to the wash/rinse/repeat cycle – and an eventual replay of last week’s 10-hour ER visit, followed by daily 1.5-hour return trips to the hospital to see how he’s doing, until the whole process starts all over again at some point in the near future.

The whole experience has me beginning to feel an understanding of the concept of hitting bottom – reaching that point where you don’t see a way out without some kind of intervention. I had a serious conversation with my own physician (also my father’s doctor, so he knows the story) about antidepressants last week. I’ve thought a lot about bringing this up in the blog, but I think it’s important to mention, because it has to be a spot many caregivers hit. The prescription he gave me is still sitting on the kitchen counter, though. My doc’s description of the side effects and my own research has me holding back. My doc suggests patients not start on antidepressants if they don’t think they’re going to be on them for at least 6 months – but all I want is a helping hand through this last stage of Dad’s life. Plus, as a creative type, I’m not sure I want something that sets up bumpers to keep my mood focused on the center line – really, would this blog have been anywhere near as interesting to read without a few over-the-top rants? Beyond that, there’s a fair amount of research out there suggesting that sugar pills work just as well, so long as the patients THINK they’re getting the real thing.

Underlying the pharmacological distrust, there’s a big part of me saying – well, dude, the reason you feel so suck-y is that, um, well – you’re in the middle of a situation that just all-around sucks. You’re just feeling it as it is. [And I want to assure all of you who know me (and those who’ve gotten to know me through this blog) – my feelings have absolutely nothing to do with self-hurt or destruction. Really and truly.] So, I try to get out and walk every morning and get to the gym 3-4 times a week to take the edge off. I’ve even taken up yoga, which can be surprisingly therapeutic. I also have my gimlet, paired with 15th Century papal sex-and-history fantasies (thank you Showtime). And I just try to take it all a day at a time.

It would be good, though, to hear how others get/have gotten through such times. How do you see someone through to death while maintaining your own life during the process?