October 2010


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It’s pushing 1 a.m., and I have to be on the road in a little more than six hours, to make the hour drive to a dermatologist’s office to have stitches removed, the result of a small skin-cancer surgery last week. But I can’t sleep. I learned late this afternoon that a man I worked with more than a dozen years ago died today. I knew him kind of well for a couple years. He was the lead ad sales guy on a magazine for which I was a senior editor. Advertising and editorial departments on a magazine often get along together about as well as, say, congressional party leadership when TV cameras are rolling. But magazines can be boozy places (at least they once were), and even Nancy Pelosi and John Boehner probably share a mike during congressional karaoke nights. In the same way, Mark and I got to know each other as human beings during the course of our working relationship. Among our bonding experiences was the fact that our birthdays were only a month or so apart. This news of his death has taken me aback.

I learned the reality of death’s suddeness at an early age. My mother became very ill in the summer before my eighth birthday. About the time I was blowing out birthday-cake candles, in late September, I began wondering just how sick she was. My parents had divorced before I turned five, so I already knew that bad things really could happen, and I’d already developed the coping strategy of imagining the worst outcome any scenario might present, to force myself to live the experience emotionally before it was laid in front of me as a present to unwrap. I remember lying in my bed, at least one night, forcing myself to live through the possibility of my mother actually dying. However, I think even my imagination, active as it was, couldn’t wrap itself around all the implications of such a catastrophic event. This shortcoming on my part, however, could not prevent that catastrophe from occurring a month later.

More recently, in middle age, I’ve seen death strike two others down in a similarly premature fashion. Paul, a dear friend and the chief editor on the magazine for which Mark and I both worked, died four years ago, at age (I think) 46. The cause was mesothelioma – and how this man who had no known exposure to asbestos, who’d never smoked a cigarette in his life, came down with this dreadful form of lung cancer is still a mystery. He left behind his college sweetheart of a wife and two young children, and a raft of friends – like me – unprepared for the loss, though he’d been fighting the terminal disease for two years.

The second, random death I’ve seen recently was that of my dear friend Greg, two years ago, at the age of 52. His partner of 32 years came home from work one evening to find him dead of a massive heart attack on their living room sofa. Though heart disease ran in his family, Greg seemed the picture of health, carting his grilled chicken and mixed greens to work every day, choosing the egg beater omelets and Skinny Cow deserts. And, yet, there I was getting the tearful phone call, making flight arrangements, sitting in a church bursting with former students, co-teachers, friends and family.

And now, Mark. We weren’t terribly close, though we enjoyed each other’s company. We’d shared our respective hard-life tales of growing up, clinked any number of post-trade-show martini glasses and bitched about management shortcomings. But since I left, first, the magazine and then the company, we’d fallen out of touch. Yes, even 10 years ago, one might have looked at him and said, enough with the cigarettes, get yourself a treadmill, you’ve got to start taking care of yourself. But one could’ve said exactly the same thing about my father at that age (except for the cigarettes – he gave those up cold turkey at age 45). And, yet, my father, with his kidney, heart and circulatory disease, still makes it to poker twice a week, and will be flying to St. Louis for a small family gathering later this week.

So I guess this lesson of randomness and the possibility of unimaginable outcomes, which I started learning at the age of 8, is one we must become accustomed to repeating more frequently as the years accumulate. I’ve heard the complaints of my father, and my grandparents before him, that this is the hardest tax aging asks of us, as yet another among the troupe of acquaintances is marked off the holiday-card list. I now sometimes find myself running that same imagination exercise I forced myself through at 8, when Dad is out and the driveway is back down to a single car, wondering when I’ll be observing that lesson of randomness, once again.

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This caregiving thing can be a slog. You spend so much of your life behind the closed front door, doing the day-to-day sheet and urinal changing, drug managing and aide scheduling, that you can lose track of the fact that there is a universe – or, at least, small galaxy – of folks who recognize the struggle, have been there and want to help. Every once in a while, though, you catch a glimmer of grace in an unexpected act of kindness that can make a world of difference, if even for just a short time. I had two of those moments this weekend, and to all those in that galaxy who may be reading, I say “thank you.” In a very frustrating weekend, you brought humanity into our lives.

Yesterday was a little fraught. Thanks to the Columbus Day weekend – I still don’t understand how this has become a national holiday – the visiting nurse aide schedule was thrown completely up in the air, a fact the agency didn’t think they needed to inform me about until early Thursday afternoon. All three of the aides who usually help Dad with his twice-a-week showers were going to be on vacation. Do retail establishments allow this to happen? We are on private-pay for this service, so I find it especially aggravating when our lives are thrown into limbo at 2 days’ notice. At first, there wasn’t going to be anyone available for Saturday’s shower, which would mean Dad would go without a shower for a full week. I managed to harangue them into sending someone over at 2:30 on Saturday – instead of the usual 9:45 or 10:15 appointment, and it was to be someone Dad had never met.

Initially, Dad went with the flow. But on the way back from a dinner out Friday night, he had the fit I’d been anticipating for at least 24 hours. The neighborhood’s annual block party was to be from 1 to 3:30 or so on Saturday afternoon. Obviously, a 2:30 shower appointment would put a damper on the festivities for Dad. Plus, he’d have to get undressed in front of yet another complete stranger in the middle of the day. Why did he need these people in the first place? Why couldn’t I just help him, instead?

Maybe this is a question you’re asking. Why, indeed, couldn’t I just help him, instead?

When I first decided 2-1/2 years ago that I would take Dad into my home, I told my sisters that I would be drawing the line at anything that had to do with personal care. In the last year, that line has been crossed multiple times. I’ve spent one 10-hour period in the ER trying to pin down his kicking legs and keep a urinal in place as he became convinced that the overhead fluorescent fixture was actually a skylight and that days – rather than hours – had passed as we waited for a hospital bed. And I’ve cleaned up numerous bodily excretions from bedclothes and flooring in situations in which bodily-function control went the way of dial telephones and cheap gasoline. But I’ve still resisted helping with showers. For one thing, I just don’t want to do it – I just don’t want to be dealing with my father that helpless and naked. For another, helping him back on his feet in any kind of fall situation requires at least 2 people. As much as he argues that none of his falls has involved getting in and out of the tub, I argue back that a) having the aide there might be part of why he’s more careful; and b) it only takes once.

All to say that we both went into Saturday morning without a terribly sincere “sleep well” to each other Friday night.

I went on to work at the big annual church bazaar Saturday morning, my head still steaming at Dad for the argument we’d had Friday night. (“Well, then, I just won’t have a shower next time, and I’ll stink for a week.” “O.k., well, that’s your decision. You’re just not getting into that bathtub without some help while you’re living here, and it’s going to be an aide helping you, not me.” … is this how you want to go into one of the fall’s possibly last really pretty weekends?) I left my shift a half-hour early, so I’d be back 15 minutes before the aide was to arrive – I didn’t want Dad to have to deal with the complete-stranger issue, without me being there.

I got home to find… no father. I was livid, thinking he’d skipped out on the appointment and was down at the block party, instead. I called his mobile. Turns out, the aide had showed up 2 hours early, unannounced. Dad had been a good sport and gone along with the change in plans, and then driven his freshly washed self over to the party. I walked over to join him and found him to be a center of much good will.

Here’s the thing: 99.95% of the people for whom my father isn’t family – which is to say, all but, say 10-20 people in the universe – think he’s the most charming man on the planet. Walking into the block party, with everyone in the neighborhood telling me how wonderfully engaging and with-it my father seemed to be, initially made me want to explode like one of those amazing Chrysanthemum fireworks you see going off over the Charles River every Fourth of July. Where were they in the middle of the doctors’ appointments and shower-aide arguments? But then I saw him sitting in his chair of honor, beaming, and my explosiveness dissipated into gratefulness. This group of people who didn’t know who I was 4-1/2 years ago had accepted, first, me, and then my father into their community. And, in an odd reversal of that parent-child, cause-effect relationship, they were seeing his charm as a reflection of my care.

Then tonight, completely out of the blue, my wonderful across-the-street neighbors called to say they happened to have a spare dozen oysters, would Dad like them? (And, yes, I do realize how amazing it is to live in a place where someone might actually have a spare dozen oysters.) They had taken advantage of their town shell-fishing license to pull a bucket of those briny delights out of the bay just that morning. Now, to Dad, fresh oysters are like a 12-year-old Scotch and a medium-rare London broil all wrapped up in a single, shelled, suckable delicacy, and you don’t get any fresher than these. “Um, we don’t really have anything to shuck them,” I said hesitantly. “We’ll bring our knife over and shuck ‘em for him,” they replied.

And so, an impromptu cocktail party ensued. I mixed up a batch of gimlets, and for 45 minutes Kenny shucked Dad’s oysters and Cherie and I chatted. Dad & Kenny talked baseball playoffs and football forecasts and Cherie and I talked about aging pets and my church’s restoration efforts. The time passed quickly, and the neighbors were soon gone, but Dad and I were happy with each other, again. It’s likely short-lived, because the two of us seem to be getting on each other’s nerves so much lately. But we gained a few hours of grace with each other, and, at this stage, when time seems more like a dearly hoarded currency and less like a commodity, those hours have been a blessing, indeed.

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I haven’t been writing as much lately because the drama that was my life as a caregiver over last winter and spring has, for the time being, calmed down. We haven’t seen an emergency room in months, and Dad’s big red taxi (aka, the EMT’s ambulance) has only had to make one courtesy call since July. Lately, though, a new concern focused on mental, rather than physical, health has begun nagging at me. Is what I’m beginning to perceive as a personality change really something, or is it nothing at all?

Dad’s memory has been selective, to say the least, for as long as I can remember. He’s always had an amazing ability to block out the bad from his personal history, which, given his life, was quite possibly an emotional survival strategy. So, since he moved in with me a couple years ago, I’ve been much more focused on his heart, lungs, kidneys and circulation issues than on an occasional inability to remember family stories from the past.

But, more recently, his short-term memory has been going on the fritz periodically. For example, for several weeks I had to repeat to him every few days that the lab slips I keep with his pills on the kitchen table were related to doctors’ appointments not occurring for several months. Invariably, within a couple days he’d hold up one of the slips and say he was heading to the lab that day for a blood draw, and I’d have to have the conversation with him all over again. He hasn’t brought the slips up in the last few weeks, and I’m not sure if my point finally got through, or he’s just decided the lab slips are too much for him to figure out, so he’ll just delegate all responsibility for them to me.

More distressingly, he can become very emotionally reactive. Any comment other than complete agreement or a totally neutral “uh huh” can cause a mini flare-up, generally punctuated by a raised-voice complaint that I’m accusing him of being stupid or a similarly vocal statement suggesting that, perhaps, he should just keep his mouth shut and not say anything at all. (And, yes – because I know you’re wondering – I have managed in these interactions to keep myself from responding in the affirmative.) This situation is becoming stressful on two counts: first, it has turned just about any conversation into a minefield; and, second, it has me wondering if there’s a serious cognitive issue I now need to be tracking.

This is one of my biggest fears. I’ve been attending a small caregivers support group for more than a year, and I’m one of the only group members who isn’t caring for someone with some form of dementia. As bad as things have gotten with Dad’s physical health, I’ve always been incredibly thankful that his mental health hasn’t been an issue. Hearing my fellow caregivers’ stories of their loved ones’ slow and sometimes dangerous forgettings has had me doing a silent knock on wood at almost every meeting. Now I’m wondering if all that wood-knocking should have been more forceful.

Of course, there could be a physical reason for Dad’s symptoms, if that’s what these behaviors are. Maybe he has an infection. Maybe his kidneys are acting up. There could be a drug interaction or, possibly, depression is setting in. I now have an appointment request in with Dad’s doctor, because it seems like it’s time for a second – and professional – opinion. But these questions all point to one of the biggest stress points I have as a caregiver, and to a theme running through many of these posts – when do I decide something is something, or simply declare it to be nothing at all.

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I’m taking a break from the regularly scheduled, son-of-the-old-guy message to talk a little about Tyler Clementi. Those who don’t know the name probably know the story from the news. Tyler is the Rutgers University freshman who jumped off the George Washington Bridge in New York City after his roommate broadcast a live webcam feed of Tyler making out with another (male) student.

I recently turned 51. I’m taking care of an 88-year-old father (who will turn 89 in just a few months). But this story still has the power to pull me into the pit of emotion I felt as an 18-year-old college freshman. We like to think that we’ve moved forward in the years since, say, 1977, but have we? If that web feed had been of a heterosexual couple, would either involved partner felt suicide – rather than assault and battery against the perpetrators – to be the appropriate response?

I’ve been trying to think this through over the last 24 hours. How does one go from humiliation, through anger, to suicide – and not revenge? This effort has required me to put my own gay self into the state in which my denying brain was residing, back during my own freshman year. I had had a devastating few years in jr. high and high school, followed by a year and a half of almost-acceptance. At the point of college, I thought I would be able to start over again. And I was. Smartness, and a certain hyper-observant (can we say “snarky”?) sensibility, were appreciated. I got on with life. I was competent and intelligent, and those two factors, combined, helped me into my professional life. Today, though, I imagined myself as Tyler, who hadn’t yet had the chance to see broader horizons. Most importantly, he hadn’t yet proved to himself that he had worth. I think he might have begun to believe that the torment he faced in high school might be chronic, not acute. That understanding has almost led me to despair.

I feel some relief from that despair in an effort called the “It Gets Better” project, started on YouTube (http://www.youtube.com/user/itgetsbetterproject). It was begun to provide a forum for us older folks to help mentor the younger folks. It was started as a gay effort, but I think it’s important in such a venture to not think parochially. Tyler became a victim of shortened horizons. But I think it’s important to ask why would the two teens who set up this situation do what they did? What shortened horizons did they see?

I’ve been a victim of bullying. In 7th grade, I was pushed down enough times, deliberately, by a classmate in gym that my wrist broke. My life was made hellish by a small group of folks in the three years that followed. Since then, though, I’ve come to understand that the lives of those responsible were also very difficult. It was a small community in which I stood out as individual. Even today, even in the liberal Northeast – Tyler grew up and went to college in New Jersey – that can still be a dangerous situation.

All of us need help understanding that life can – even, will – get better. Bullies do their bullying for a reason. In my mind, it’s all about a need for control – if we can’t feel it about our own lives, we will try to enforce control over the lives of others. Helping all young people understand that they can own their own selves will give our future the room it needs to thrive. I’m thinking about what I might say in my “It Gets Better” video. What will you say in yours? This isn’t a a gay thing or a straight thing, or a Black or White or Asian or Hispanic thing. It’s a human thing. If our kids, who are our future, don’t believe that it can get better… well, it won’t. Our words about our own experiences can help provide the objective evidence that what some like to dismiss as that “hope-y, change-y thing” isn’t just a hypothetical concept. Indeed, hope, and the faith that it will, in fact, get better – are the two most powerful lessons that we can teach the next Tyler – and his potential tormentors.

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