It Takes a Village

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.

 

Whaddya do?

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?

 

!–rant

So, in the land of html coding, where I’ve spent a small part of my professional life, there’s a great mechanism for adding comments to a web page’s code that only another code reader can see – they show up in the page’s source code, but not the visual page display most web surfers see. This post is just such a comment – a bit off topic from this blog’s general ramblings of an individual caregiver, but potentially of interest to those who follow the broader (and often political) issues of caregiving, in general. To use yet another Internet-popularized term, it’s a bit of a rant.

My jumping-off point is a recent post in one of my favorite blogs The New Old Age, by Jane Gross, the founding editor of that blog (now admirably managed by Paula Span) and author of the book A Bittersweet Season. In general, I’ve found Jane’s writings to be informative, entertaining and very truthful to the caregiving experience. This post lays out an argument for caregivers to gather up the cudgels of their varied experiences to batter down the doors of anyone playing a role in Medicare and Medicaid reform decisions. “O.k.,” I’m thinking, while reading Jane’s urgings, “this is a conversation in which I can play a part.”

Even more, she also spoke of the scariness many of us who care for parents feel – and run away from – in seeing our own possible fates in the lives of our fathers and mothers:

“No matter how awful their protracted deaths, we don’t look around the next corner and worry about what’s going to happen to us. “I’ll be playing tennis one day and dead the next,” we say. “Or I’ll shoot myself.” The first is unlikely, and the second glib.

I’ve even written about this one, myself, this past summer.

Then Jane completely lost me. Lost me, and any other man who happens also to be a caregiver.

Most mysterious is that this is a women’s issue. Boomer women changed the world for themselves and those who followed at each stage of life — and now they have fallen silent.

….Why did we fight so hard for sexual liberation, birth control and abortion rights, new models of childbirth, respect in the workplace and child care — only to become demure good girls in middle and old age? We’re caring for our parents, yes — but secretly, whispering behind our corporate cubicles to their doctors or pharmacists, cooing appreciation or hissing excoriation at people we’re paying to help take care of them.

So, apart from the demure little girl part, Jane is describing my current life. I work out of a home office instead of a corporate cubicle, but those conversations with doctors and pharmacists and home health aides and elder-law attorneys are eating up just as much of my daily work life as anyone else’s. And, as a self-employed writer, I don’t have any vacation or sick time to fall-back on for the days lost to ER visits and specialists’ appointments. But, apparently, this isn’t my issue to address.

Now, I’m not negating the overwhelming presence of women caregivers. In a 2009 National Alliance for Caregiving survey, 66% of caregivers were found to be women. But that remaining 34% – we’re men. And we need help just as much as the women whose cause Jane champions in her post. And to call this a “woman’s issue,” is to shut the door on any insights men might be able to add to discussions of ways to address the challenges ALL caregivers face.

Of course, I had to add my opinion to the comment section of Jane’s post, and I received a respectful response from Jane, in kind. However, one of the other commenter’s remarks were a truer reflection of what I see as the problems that come up when we try to turn this from a social/health policy issue into a strictly feminist issue (all punctuation and capitalization is quoted as it appears):

oh please! i am so sick of people citing EXCEPTIONS to the rule to “prove” the rule is meaningless…OBVIOUSLY most caregivers as well as most of those needing care are WOMEN…the fact that some (a minority, perhaps 15-30%) of the caregivers are men does not change the FACT that yes, this is a women’s issue, just as the fact that a small minority (less than 10%) of single-parent households are headed by men does not change the fact that single parenting is also overwhelmingly a women’s issue…your personal experience is interesting but irrelevant statistically…the numbers tell the tale…

Did you read that? My personal experience – and the experience of a third of all caregivers – is “irrelevant statistically.” In what other sociopolitical conversation in this country would it be acceptable to write off the experience of a third of the population as “irrelevant statistically”? Take, for example, this data point pulled from the 2010 census by the National Poverty Center: 35% of children living in poverty in the U.S. in 2010 were Hispanic. Would anyone, for one instant, suggest leaving Hispanics out of conversations discussing solutions to childhood poverty in this country?

I take up this issue not as a point of political correctness, but to emphasize that the experience of being male and a caregiver can be very different than it is for women in this country. How, for example, do you design outreach support for a population segment socialized toward self-reliance and emotional privacy? And how do you help those men learn the emotional translation skills they’re going to need to read past a parent’s surface assurances to understand the underlying cries for help? Proclaiming caregiving to be a “woman’s issue” shuts the door on these and other very real hindrances men can face when attempting to do the best they can for their own parents – about half of whom, by the way, are women.

 

Simply Dread-Full

I haven’t written since Dad’s hospitalization in late October because, honestly, I haven’t been able to focus on a single issue long enough to write a post. I’ve been living in a bit of a fog for more than 6 weeks now, as Dad made it through 3-1/2 weeks in the hospital and, now, another 3 in rehab. We’ll be coming to a decision point soon, though, regarding Dad’s eventual living situation, and that fog is shifting in nature, from confusion to dread.

As a catch-up, it turned out that Dad did, in fact, have a tumor in his colon. This isn’t a complete surprise – back in February, he had a stool sample test positive for blood, but he refused to have a colonoscopy (read about it here). The tumor was discovered during surgery, a procedure necessitated by the fact that his colon was completely obstructed, causing pain that not even morphine could ease. On the plus side, the surgeon was able to get the entire tumor, and it appears the cancer hadn’t had a chance to spread. On the negative side, though, Dad woke up with a colostomy bag, which is likely to be permanent, since reversing the colostomy would require him to have similar surgery all over again. Because this surgery nearly did him in, it’s doubtful the surgeon would want to repeat the experience.

A number of complications arose post-surgery – he developed thrush in his mouth and throat, which made eating almost impossible for a couple weeks, so he lost more than 20 lbs., and he also developed a case of c. difficile, which is a kind of bacterial diarrhea that can crop up when you’re taking major antibiotics. He was transferred to rehab while still dealing with those issues. His first week or so there were pretty un-productive, but in the last two weeks, he’s gotten on-board with physical and occupational therapy and has actually walked 20 feet or so with a walker.

So, you might ask, with all that progress, why the dread?

At some point in the not-so-distant future – possibly as soon as five days from now, or a week after that – Dad’s going to hit a plateau, at which point his insurance will require him to be discharged… but, to where? I have serious questions about him coming home, but I’m tearing myself up inside knowing that the only alternative is a nursing home – possibly, the nursing wing of his current rehab center.

One big reason for my concern can be boiled down to a simple two-word phrase: the bag. Dad will be 90 next month and has never been what one might consider fastidious. His hands shake picking up a glass of water these days, so, obviously, motor skills are an issue. Even if he’s able to get up out of bed by himself at discharge, his balance will still be compromised. And he’s demonstrated, over and over again, his inability/refusal to stick to health professionals’ instructions for more than a week or so. To me, this all paints a picture of a guy who may be able to pass a nurse’s scrutiny on any given day, but will fall apart after a week or so at home. And I, then, will be the only back-up guy for dealing with leakage issues – or, even, bag explosions (both have happened, even under 24/7 care, in the rehab center), whether they occur in the middle of the night or when I’m in the middle of a conference call.

In addition, beyond the bag, there’s also the simple fact that, despite physical/occupational therapy progress, his health is very fragile. Since his hospitalization, the diabetes that had been merely borderline has become an issue. The nurses check his blood sugar several times a day, and he’s getting insulin shots multiple times a week. Yes, many people are able to deal with blood-sugar testing and insulin shots on their own, but they aren’t learning how to do it all at age 90, with questionable motor skills and even more questionable motivation to stick with the testing routine in the first place. So, again I become the back-up nag/finger-sticker/shot-giver. Of course, his chronic kidney disease, peripheral artery disease and general heart issues also still remain.

Having been through the rehab-center discharge process with Dad multiple times before, I know how the routine works. Once the participants in his weekly case-management meetings come to the conclusion that he’s hit a plateau, we’ll have 48 hours to figure things out. Because of everything I’ve mentioned above, I’ve started the difficult conversation with Dad that home might not be an option when we hit that decision point. And I’ve started the application for the rehab center’s long-term care wing, and started doing all the work to get his finances in order for a possible Medicaid spend-down. Even without all my background anxiety, this would be an almost overwhelming process.

I’ve been keeping Dad aware of what I’m doing, but he seems to think that, if he just works hard enough in his therapy and with the nurse who’s dealing with his colostomy bag, he’ll be just fine at home. While I don’t say anything to discourage him, inside I’m wondering how on earth I’d be able to keep my business – much less a personal life – afloat, with him back in my house. For readers who don’t know this, I work out of my home – the key verb in this sentence being “work.” Running up and down the stairs multiple times a day to deal with blood-sugar testing, toxic-waste clean-ups and general checking-in would destroy whatever concentration I’m able to maintain, given the TV hum that’s become a constant presence in the nearly 4 years he’s been living with me.

So, this is what is keeping me up at night and wrapped up in knots during the day: At some point in the next couple of weeks, in a basement conference room, I’m going to have to sit facing a panel of rehab-center professionals and tell them that – despite whatever conclusions they may have come to, and assured Dad of – that I just can’t bring the elderly father sitting beside me back home again.

 

Thank God it’s not cancer

So, we’ve had a bit of a scare the last few days. Friday night, Dad started complaining of constipation – despite having had a bowel movement just the previous morning. By 5 a.m. Saturday, he was completely miserable, not sure which he wanted to do more: poop or vomit. We went to his primary-care doc’s Saturday walk-in clinic – they prodded, he yelped, and off to Cape Cod Hospital’s ER we went.

The first thought was that Dad had gallstones. Then the tests started coming back. The good news: the gallbladder was fine. The bad news: he had a “mass” or an “obstruction” in his colon. Faster than you can spell “admission” he was checked into a room with one of the best views of Hyaniss’s Lewis Bay you’ve ever seen. The news from yesterday’s colonoscopy is that the problem is diverticulitis, not a tumor.

Obviously, there is a relief that colon cancer appears to be ruled out (at least until the next series of tests). But diverticulitis raises its own series of issues, and a question: is this less-than-drastic diagnosis really better than one that simply adds to the slow, chipping-away that’s been happening to Dad’s quality of life over the last several years?

This situation isn’t really a surprise. Dad had some digestive problems back in March, and a stool test came back positive for blood. Both his primary-care doctor and gastroenterologist urged a colonoscopy, but Dad refused, and, honestly, I was quietly relieved. There were some health risks for him with the test – the prep solution works by pulling all the fluid out of your organs to flush out your bowels, and that can be very hard on compromised kidneys. Plus, Medicare won’t pay for hospitalization, or even an aide, to help with the prep. The guy has trouble now just getting from the sofa to the bathroom without tipping over, so I had horrible visions of some extremely messy falls after having to make that trip multiple times over a period of hours, getting weaker all the while.

Of course, if he’d had that colonoscopy, the doctors might have caught the diverticulosis that is the root cause of the diverticulitis infection that now has him laid up in the hospital. But treating diverticulosis means becoming especially careful with your diet, which is asking a lot of an 89-year-old whose steak, bacon and Scotch are among the very few pleasures his life has conspired to allow him at this point. He simply wouldn’t have done it – in his almost 90 years, he’s probably eaten 23 green beans and three or four peas, so becoming a fiber-rich herbivore would mean a complete life change. And I’m not about to turn into the diet police; since I forced the process that led to him losing his license, I’ve made the decision not to push back on what others might think to be ill-considered choices if they don’t carry a risk of hurting someone else.

At this point, the doctors are still trying to figure out why the infection is persisting. Yet another National Geographic-like exploration of his colon may be in store tomorrow. There may be yet-to-be-found causes that could be much worse. But already, I’m beginning to wonder about how he recovers from this. His oxygen levels are dropping precipitously when the nurses try to get him walking, so his leg muscles could well be losing what little strength they have from lack of use. I’m sure there will be a rehab stay once the infection is controlled, but what will his life be after that? My house just won’t accommodate a wheelchair, so there may be a real question regarding his ability to return home.

Which brings me back to the diagnosis. Is the current guesstimate of diverticulitis really better news than a fast-moving cancer that might have taken him quickly, but with still enough time to say his good-byes? Instead, rehab could just be a transition to a nursing home, where, yes, he might live longer than with cancer, but to what end. So, as I recount this information to others, and they respond, “Well, thank God it’s not cancer,” I smile and nod, but inside, I’m beginning to wonder, “Really?”.

 

You Are Not Alone

Dad and I went out to dinner last night to celebrate my 52nd birthday. While it might seem like going out to dinner would be a nice break from the regular meal planning/fixing/washing-up routine that makes up most of my evenings, it’s often more of a chore. First, it means I miss my beloved evening vodka gimlet. If I’m driving (and I always am, these days), then I hold myself to a single glass of wine with dinner – Dad and I went round and round over his drinking and driving too much for me to allow him the satisfaction of an “I told you so” now that I’m behind the wheel. Second, it means eating even earlier than we usually do – for some reason, though we never eat before 7 pm when dining at home, Dad starts getting really antsy by 6 pm if we’re going out for dinner. And then, finally, there’s Dad, himself, at the restaurant.

Because Dad traveled so much for his work, he became very particular about food and service over the years. That fussiness has only gotten worse as he’s gotten older. I now cringe when he orders steak, especially here on Cape Cod (even I will tell you that, to a Midwesterner, if you want good beef here… well, maybe you’d prefer the fish). There’s a 50/50 chance any beef dish he orders will be either sent back or bitched over when the server comes by for that perfunctory “And how is everything?” check-in. And if his Manhattan comes to him in a glass that hasn’t been chilled to the point of frost build-up, it will be returned to the bartender faster than you can say “straight bourbon.”

I tell these stories to my friends, and, to them, these actions are just another example of what they see as his cranky-old-guy charm. The thing is, he’s been acting this way since he was at least my age – and it’s only been in the last year or so that I’ve perfected the breathing exercise required to keep my blood pressure below 163/95 when he does it. A part of the relaxation process is just gazing around the restaurant as Dad explains to the server just why his drink/steak/whatever isn’t to his liking, to separate myself from the entire experience.

So, last night, as Dad was instructing the waitress (aka, “young lady”) on proper cocktail-glass-chilling technique, I let my eyes float over the crowd, which prompted several observations. First, at 6:30 pm, it was pretty darned crowded. Then I started noticing a pattern – a whole lot of folks my age were sitting at table with a whole lot of folks Dad’s age, and many of them were dealing with their own little embarrassments. For example, there was the aging father having trouble negotiating the crowded restaurant and bar area, and another several tables over whose eyes were glazing over as his son repeated everything the server said at high volume to an equally aged mother. And seated right next to me, a woman a couple years older than me was buttering her 80-something mother’s bread because her mom was obviously having trouble with the sight and manual dexterity needed to complete this task on her own.

These observations got me thinking through the course of the rest of the meal at the irony of how isolating the caregiving experience can feel when there are obviously so many of us going through it at the same time. You must have noticed this – mention to someone who’s pushing 50 or older that you take care of an older parent, and the odds are pretty good they’ll have a story or two of their own. When you consider the demographics involved, this omnipresence becomes even more obvious.

The over-80 age group is one of the fastest growing demographic groups around the globe, these days. And those of us now taking care of them? We’re members of the largest population bubble this country’s ever experienced: the Baby Boom. So there are both a lot of old folks to take care of, and a lot of middle-age kids being called on to do that caring. This is why restaurants that 40 years ago faced an early-evening rush of kid-crammed station wagons now see their dining rooms filled with middle-age patrons buttering their elderly parents’ bread.

If you look around a bit, you’ll see this phenomenon everywhere – in the supermarket where a late-50s woman is walking a shopping cart next to a scooter-driving mom, and in the dentist’s office where that guy in his early 60s is answering the clipboard full of insurance questions for the father whose hearing and vision are both shot. As a society – myself included – we have a habit of skipping past older folks as we visually scan a space, so we also miss the presence of those a generation younger standing by their sides.

Maybe this is something to remember the next time I’m feeling like no one else could possibly understand how beaten down I feel by yet one more urinal spill to clean up or workday-interrupting specialist’s appointment to attend. And I bet a knowing smile shared with that cart-pushing daughter or clipboard-bearing son will make this connection even more real for both me and that other dutiful, aging child. There are a lot of us out there now and we’re all doing the best we can. And, while others might not recognize our presence, in recognizing each other we can help make all of our work just a little easier for a time.

 

Rewind

I’m taking a step back from the dad-documenting to revisit something I wrote 5 years ago. If you’ve slogged through this blog all the way to the beginning, you might have discovered this effort began as a way to document my move to Cape Cod as what is (somewhat) fondly referred to here as a “washashore.” In it’s own way, the attacks of Sept. 11, 2001, became a motivation for this move. Those events were a jolt to my system and made me rethink priorities – I know I’m not alone in having that reaction. As a result, I know live in this house, in this special place, that has become home to first me and then my father.

I originally wrote this post on Sept. 11, 2006, while watching an amazing 4 hours or so of CNN’s original 9/11 broadcast, which the network was rerunning online.

Here’s the link to that post: Five Years and One Week Ago

 

So, Where Do I Fit In?

I generally bristle when people compare caregiving for an aging parent to parenting a child. The analogy creates a pretty circle, but it misses a major mark, in my opinion – in the vast majority of cases, except where severe disability is involved, a parent can trust their young one will become more capable and independent over time, so their own job will become easier (physically, at least). The exact opposite is true when taking care of a parent. In just the last few months, I’ve observed Dad becoming just a little bit more frail – if the infection he had last month knocked him down three notches, he’s only gained back two of them.

There definitely are common aspects, though, to the parenting and caregiving experiences, and one I’ve been feeling especially for the last month or so is the effort it can take to wedge myself back into my own life. My daily and weekly schedules are so entwined with my father’s needs that even a dinner out takes advance planning to make sure I’ve got something in the house that Dad can manage on the Foreman grill or with the touch of a single microwave button. And spontaneous travel is pretty much impossible. A recent two-night trip was planned so that I left after dinner on the first night, and I made special arrangements with his new paid driver/companion to take Dad to breakfast the next morning, and then on to his senior center poker game at noon. Neighbors came over the second night and brought dinner for him with them. The next morning, his shower aide came, and I was home just after noon. Setting this up took time to plan logistics, as well as phone calls and an extra day’s pay for the companion. And forcing myself to not think about him alone overnight took an almost physical effort.

Dating – and, yes, almost-52-year-olds do still have an interest in dating – gets even more complicated (as though dating at almost-52 isn’t complicated enough). Dating was the reason for that two-night trip. While it was wonderful to get away to spend time with someone new, it was hard to keep my mind where I was at the moment, and not wandering back across the Sagamore Bridge, to my 89-year-old father sitting alone in the living room, or sleeping alone in the house. In other words, I was having a very tough time making me, not my father, my priority, even in the middle of a romantic 2-night respite. I’m guessing there are some single parents who’d understand this difficulty.

And, like many parents of young ones, I’ve put any redecorating decisions on indefinite hold, and my home’s appearance shows it. I tried to get the place looking as good as I could before my date came to visit a couple days after our really nice 2-day retreat. I dusted and oiled furniture and vacuumed like crazy in the living room to help address cat-allergy concerns. I scrubbed the chipped-Formica kitchen counters and mopped the 45-year-old vinyl-tile floors. To me, the place was looking pretty good. Then the date arrived.

What was my guest really seeing? I’m not a mind reader, so I can’t presume to know the thoughts or life experiences that traveled through the back door. There even may have been an “aha” of recognition, an “I know what this is.” But all I could do after turning from the face at the door back to the kitchen we were standing in was channel Bette Davis: “What a dump.”

So, yet again, I found myself missing from my own life. This house is not how I live when my life is my own to decide. I can find comfort in certain elements – the morning light through the four kitchen windows, say, or the contrast between the bathrooms’ white beadboard wainscoting and pale blue walls. But I now close my eyes to the whole of it, because the saggy, stained sofa, and cracked bathroom grout are beyond my dealing with, when the daily needs and destructions an 89-year-old can raise force my own things-(mostly)-in-their-place desires to the back burner.

Sure, I could face those destructions head on, take a “damn the torpedoes” approach and follow after Dad with a vacuum and ShamWow cloth, and enforce a sitting-while-peeing rule to limit bathroom-floor damage. I could get that new sofa and cover it in plastic, refinish the floors and make Dad wear booties over his shoes. But I think that would force another part of my identity, the guy who’s working his hardest to just remain kind, out of the picture.

Instead, this time of year, which includes so many of the reasons why I moved to this beautiful place, Cape Cod, I do less cleaning and mowing and weeding and organizing than I probably could, and, instead, escape to Nauset Beach. I lay out my blanket, unfold the chair and take in a deep breath of briny astringency. There, maybe two or three blankets over, or diving into the surf, I can almost see myself again, smiling and waving, as if to say – “It’s o.k., take a deep breath, I’ll still be here when your time returns.”

 

Ou etes-vous, Jean-Paul Sartre?

So, to any philosophy student interested in some real-world experience in existentialism, may I suggest the emergency room of your local hospital. Forget the cigarettes, black berets and blacker coffee. Instead, if you want to confront all those big “why” questions and stare futility right in the face, find a way to be a fly on the wall in the ER. For added impact – the “yeah, but what does it mean for me?” effect – spend that time in the treatment cubicle of an 89-year-old who happens to be responsible for half of your own DNA.

You frequent readers may have guessed it from the lead-in – after a year of swearing he’d never be back there, Dad ended up in the ER last night, the result of a building level of confusion that began to alarm me through the course of the late afternoon and evening. An hour into his 5 p.m. scotch, the glass remained three-quarter’s full in front of him. He seemed less than enthusiastic about our planned dinner out at one of the local clamshacks, and once we arrived and sat ourselves down, he simply couldn’t engage with the paper menu in front of him. He tried to tell me of some of the conversation that had gone on at his Senior Center coffee group that afternoon, but I couldn’t make any sense of the random sentence fragments he was attempting to string together. At that point, I decided it was best for us to get back home. Walking him from the car to the front door, I realized the wobbly balance issues that had been slowly creeping up over the last couple months were suddenly much worse. It was like he had lost 75% of the strength in his legs – he took my arm and as I held onto him I could feel he was really warm.

When I reached the on-call doctor, he suggested monitoring Dad overnight and bringing him into the walk-in clinic first thing in the morning – but if his temperature hit 101, get him to the ER. Two hours later, I found Dad sitting on the edge of his bed unable to transition from sitting to laying down. I did a quick temp check – 100.8 – and I made the call to what we fondly refer to as Dad’s Big Red Taxi, which came and took away my old man.

And so, there I was, again, packing spare clothes for him and laptop, book, health-care proxy paperwork, etc., for me. Surprising how quickly routines can reestablish themselves. And, a half-hour later, there I was, at 11 p.m., attempting to appear awake and upbeat, supportive yet persistent in conversations with nurses and aides. And, yet, underneath it all, I felt, again, like Scrooge seeing the ghost of old age yet-to-come.

You see, one of the hardest things for me to deal with emotionally in this whole process is the fear that, in my father, I’m looking my future in the face. Spending as much time with him as I do – seeing the right arm barely able to lift a half-gallon milk jug (I’ve given up buying gallons because they’re just too heavy for him), the effort required to get out of the car, his inability to understand what each of his pills does or that he, in fact, has anything wrong with himself requiring the medications – I can’t help but wonder/fear what that portion of my journey will be like for me.

Sure, there are many other challenges in caregiving. The cleaning up – of bathroom floors, bed pads, spilled coffee, the half-ear’s worth of corn kernels that ends up at his feet whenever we have it on the cob – the following up with doctors and specialists and pharmacists, the desire to just give up and take a vacation where three solid nights of sleep might actually run consecutively. And, of course, there’s always the other big self-oriented worry: who will play my role when I’m 89? But the concern that really tightens my chest when I look at my father is, is he – his face, his body, his illnesses, his life – a mirror looking back at me from 38 years in the future?

Maybe it’s a middle-age crisis, but, at almost 52, the 38-year age difference between Dad and me just doesn’t seem all that substantial anymore. And I find the possibility that he could just be me, aged Hollywood-style, simply terrifying. It makes me want to run, get away to that place of simple, oblivious living that is such a luxury to those who aren’t looking mortality in the face every day. In this case, Dad got sent home six hours later with a prescription for antibiotics to treat the a)urinary tract infection, b)bronchitis or c)both that may/may not have been the root cause of the fever and confusion. But I packed him back into the car thinking that, like Sisyphus, this was a rock I’d be pushing up a hill again.

So, you student of Existentialism 101, watching fly-like from that cubicle’s wall, understand that this is what all that Sartre and Camus boils down to – at least to me. An 89-year-old man sleeping fitfully in an emergency room johnny robe, and a 52-year-old son looking on, wondering if the answer to the question “Why?” is, simply, “Because.”

 

Blame game

Well, it’s been some time since my last post. Mostly, I’ve been swamped with work and my new chauffeurring responsibilities since Dad has lost his license. It’s been a very difficult transition for both of us, and we are (I should say, “I am”) only now marshaling the energy to explore new options. One that I’m hoping may work out is getting Dad to agree to pay for a companion to get him out and about a couple times a week. We talk with one highly recommended possible candidate next week – fingers are crossed.

I’ve been thinking a lot about the concept of blame/fault during this whole process – I just want to shout “It’s not my fault” at him, sometimes, when he tells yet another stranger the sad tale of losing his license and how it just didn’t need to happen, with me sitting 3 feet away. It did need to happen, I want to say – and maybe, just maybe, if you’d eaten more (or, for that matter, any) vegetables and less steak, bacon and Scotch, your body wouldn’t have betrayed you in this way.

More recently, I’ve been working at stepping back and ignoring, which helps limit the explosive arguments the two of us can get into with each other. But removing myself that way and emotionally disengaging feels almost as harmful to the relationship as a go-for-the-jugular blow-up. In a way, it feels like a kind of abandonment.

So, I’ve found myself working my way through a progression of realizations – or, maybe, a realization of the realizations I need to pass through to get to a point of peace these days. It is, as the therapeutic community loves to say, “a process.” But I’m going to share these waypoints, as I see them, more as a way of talking them through for myself than as any sort of prescription for anyone else going through the process.

It’s not your fault. The person you’re caring for just got old, or got sick, or got sick and old. It’s not your fault. Getting comfortable with accepting this one has helped me a lot in the last few weeks – because, if it’s not my fault, then I’m also not responsible for making everything better. I can do my best to listen, help out and present alternatives, but I’m not on the line for making it all o.k., again.

It may be, at least partially, his/her fault. People don’t like admitting this one, I don’t think, because it can come across as blaming the victim, or hitting a guy when he’s already down. But the fact of the matter is that life choices today can affect quality of life tomorrow. People who keep smoking may well have serious issues with COPD 20 years from now. And people like my father, who refuse to change their fat-, salt- and Scotch-laden diets, despite serious kidney disease and congestive heart failure – well, they’ll probably pay a price in mobility, energy and presence of mind going forward.

In the end, it doesn’t matter. I don’t mean that you have to go back to thinking you actually can make it better – I just mean that, if you’re there, you still have to deal with the situation at hand, whatever that might be. You just can’t turn the fact that it isn’t your fault into a position of placing the blame for all current difficulties onto the person for whom you’re caring, or you’ll end up eating yourself up with anger.

Whenever possible, strive for kindness. (Note the caveat “whenever possible.”) This is much easier if you can get to the “it doesn’t matter” point in your head. But, even if you can’t, working toward a point of kindness might help you slowly ease toward that direction – sort of like how smiling when you’re unhappy can sometimes actually turn your mood around.

So, I don’t want you readers to think that I’ve gone through some zen-like transformation in the last six weeks. The anger I described in my last post is still there, I’ve just begun to realize that I can’t keep holding onto it and maintain a workable relationship with my father at the same time. This is one reason why, next week, I’m going to be seeing a therapist who has a sub-specialty in working with caregivers. As has been said in a completely different context, recognizing you have a problem is often the first step in solving it.