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I’ve been quiet here for the last few weeks because life with Dad has lacked the isolated elements of drama that typically push me toward the keyboard. Instead, there’s been the daily routine of an hour of gin (as in cards, not Bombay Sapphire) with him before lunch, and a check in with the nursing staff on any potential medical issues. On the surface, all seems stable and just a little boring, but nagging financial issues have been slowly burning under the surface, in the way forest fires can stay alive on underground roots before breaking ground in a tree-sized whoosh.

First, there’s been the daily/week/monthly responsibility of managing Dad’s finances as well as my own. “How big a deal can this be for a 90-year-old in a nursing home?” you might ask. I didn’t think it would be an issue, myself, back in November, when I first started signing the monthly checks for his cell phone, credit card, Medicare Advantage plan and various doctor co-pays. (FYI – I’ve been a co-signer on all his accounts since he moved in with me.) Then all the niggling, confusing correspondence and phone calls began with these various companies. The billings for his hospitalizations and ambulance rides were especially annoying, because the bills might show up more than a month after-the-fact, with follow-up invoices maybe 2 weeks later. I soon learned to hold onto invoices after I paid them, to double-check whether those bills were duplicates or new notices. Then there were the two afternoons I spent on the phone with Sprint’s “customer service” (full irony intended with these quotation marks) disputing the hot-chick text-message service charges on Dad’s cellphone bill.

Then there’s been the need to preside over the slow dismantling of Dad’s assets to pay the monthly nursing home bill. Some of this I’ve been able to do under my own authority as a co-signer. But the most significant transactions have required Dad’s own signature, since he’s still capable of making these decisions on his own. For each of these signings, I’ve had to get the paperwork organized and bring the required forms in for his formal approval – generally with time spent re-explaining the reasons why an account has to be closed and estimating again for Dad how much of his minimal life savings still remains before the balances drop to near-zero. And, also, re-explaining why we can’t just change the account to my name and pretend to the state that the assets don’t exist anymore. Just thinking about those visits can make me wish to replace the card game with gin of the Bombay Sapphire variety.

And now I’m in the middle of preparing the application for MassHealth, the administrative arm of Medicaid in the Commonwealth of Massachusetts. We can’t submit it until Dad’s assets get below $2,000, but it needs to be ready for submission as soon as that date arrives, which is likely to be sometime next month. Then there will be a new series of regular accountings, I believe, to ensure all expenditures fit into allowed categories the state has established for its Medicaid beneficiaries.

Aside from the periodic required signatures, I keep these financial concerns below the surface when I step into Dad’s room for the daily hands of gin. But worries over bills and deadlines and spend-down compliance have taken up small quarters in that corner of my brain reserved for anxiety, and they can flare up like one of those Western forest fires in the middle of the night, burning up any hope of returning to sleep. Of course, medical issues still can add fuel to these blazes – yesterday I learned the nurses had spotted a potentially cancerous growth in Dad’s left ear that may need removal. Dad bleeds like a stuck pig with even a shaving cut, and is prone to wound infections, but this growth has gone from small scab to possible ear blockage in just a week, so doing nothing might not be an option.

To shift analogies from forest fires to baseball – It ain’t over ’til it’s over. It appears the fat lady wasn’t singing a final aria when Dad settled into the nursing home, she was just serenading the fans during the seventh inning stretch.

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So, four days ago Dad marked his fourth anniversary as a Cape Cod resident (NOT a Cape Codder – there are rules around here about who can claim that title, and neither Dad nor I will live long enough to earn it). When he moved out here, it was because we both knew he’d end up in a nursing home quickly if he stayed in St. Louis. Keeping him out of a nursing home had been our primary goal up until late October, when what he thought was constipation turned out to be a tumor in his colon. Over this past weekend, a day or two past that fourth anniversary date, he officially ran out of Medicare coverage at the facility where he’s been living since about Thanksgiving. So, we’re now in the spend-down period, when nursing home bills eat up all but $2,000 of his savings and he’s poor enough for Medicaid (called MassHealth in Massachusetts) to kick in. And, while this was just the situation we both had been dreading for years, it turns out it’s actually o.k., in large part because of my father’s amazing emotional resilience.

The first month or so after Dad was admitted to this facility’s rehab wing for physical therapy was pretty stressful for me. He still thought he could get well enough to come back home, while all I could think of was his weak, shaking hands and that colostomy bag, along with the blood sugar testing and insulin shots he now required. He was making some progress toward walking, but still was wearing Depends because he couldn’t make it to the toilet on his own. However, his early January hospitalization put an end to his dream of getting home again. He was flat on his back for nine days with congestive heart failure complications and, by the time he was readmitted back into rehab he had lost all his progress. He tried to recoup those losses in his physical therapy sessions, but then his oxygen levels and blood pressure started dropping anytime he tried to stand up, and the therapy had to be discontinued.

That was a dark day. I happened to show up just after he got the verdict from his therapist, and I’ve rarely seen him that down. It seemed like he might have hit that “What’s the point” stage, one hears about, when folks just decide their time has come. Overnight, though, some extraordinary wind blew through his psyche, and when I showed up the next day to check on him, those dark clouds had passed. “What else can I do,” he said with that familiar shrug when I noted the positive change of spirit. “This is where I am.” He’s maintained that equanimity in the weeks that have followed, and his acceptance has been a gift to me, allowing me to shed the guilt I felt with the thought that I might be forcing him to stay somewhere he didn’t want to be.

Watching Dad continue to interact with the staff in his characteristic smilingly sarcastic manner when I show up for what has become a daily game of gin between the two of us, I’ve also been able to put aside the thought that a nursing home would be hell on earth for any elder competent enough to understand they’d reached their second-to-last resting place. I’ve been an on-again/off-again member of caregivers’ support group at the local Council on Aging since Dad moved in, and many of the other caregivers have been dealing with parents or spouses at various stages of dementia. How much easier it would be, I’ve thought, to handle the emotions attached to admitting someone to a nursing-home if that person wasn’t in a state to understand the situation.

However, the last few weeks have put such thoughts to rest, because I’ve come to see that Dad’s quality of life really hasn’t diminished, despite his change of residence. He’s not going to be one of those life-of-the-facility types one hears about – he just doesn’t have much interest in all those other “old people” attending the activities. But he’s completely charmed most of the staff, and, as a result, likely has more interpersonal interaction than he did living with me. As before, he spends most of the day watching golf on TV, but nurses and aides are in and out of the room several times an hour. And when I show up for our daily gin game, we spend real time together, resentment-free on both sides.

And, on the other side of that false assumption, I’ve also seen, up close, the level of incapacity with which human beings can live and still sustain a heartbeat. Walking down the hall to Dad’s room, I often pass aides pushing wheelchairs that look like rolling recliners, with patients curled into near fetal positions. They’re being transported to a dining room where aides will spoon feed them their lunch. No sign of personality or emotional affect remains. “What was I thinking?” I asked myself, the first time I walked the hallway to Dad’s room and considered the heartbreak family members must feel when faced with this physical reminder of a mind that’s long since left. “Thank God that’s not Dad.”

Just as I began writing this installment, a friend posted a great quote from Abe Lincoln on their Facebook wall – “Most folks are about as happy as they make their minds up to be.” Through all of his stubbornness, and his refusal to acknowledge the health issues I saw staring him right in the face, Dad has demonstrated the truth in Lincoln’s observation. I hope my attention to exercise and eating (mostly) healthy will keep me in better shape if/when I hit 90. But, if not, I also hope I’m able to remember Dad’s example when facing any similar situation and make up my mind to be happy. Because, well, what else can you do?

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I’m a gay man of a certain age and, as such, it wouldn’t be out of place for an outside observer to assume me to be a disco fan. However, while I love me some Weather Girls, I’ve always been much more of a New Wave kinda guy. Elvis Costello, Joe Jackson, The Cars, The Police, the B52s (in addition, of course, to Joni in all her early-80s jazz phases) were the musicians who got me onto the floor. The Talking Heads rank at the top of this list, with all their arty ambiguity and surrealistic, mystical imagery. “You may ask yourself, how did I get here?” they asked in “Once in a Lifetime.” “You may ask yourself, how do I work this?” In my early 20s, these lines seemed so deep, yet irrelevant. Today, they seem absolutely prescient.

Today, I had what was, at the time, a natural, in-the-flow-of-things conversation with the nursing supervisor on the floor of the nursing center where Dad’s staying – just how aggressive do we want to be in his care? You see, he’s up 5-7 pounds in the last week and back on oxygen. He’s getting weighed daily, which is more aggressive than typical for this facility and can mean daily or every-other-day medication adjustments. And pushing higher doses of diuretics can mean a great chance for kidney problems. In the end, Dad’s heart may just be about ready to call it quits. So, the nurse’s questions were both justified and humane – treatment or comfort? What’s the priority. I’ll talk with Dad about it during tomorrow’s visit, I said – just one more of those end-of-life kind of conversations that seem to be occurring with the frequency of observations about the day’s weather between Dad and me.

Two days ago Dad & I met with that same nurse, along with the physical rehab supervisor and the nursing wing social worker to talk about what’s next. Well, what’s next, post-rehab, we all agreed was a long-term care room. Dad’s blood sugar is all over the map, ranging from 120 to 210 or higher in any given 4-5 hour period. He can’t walk unassisted, period, and even assisted he can’t go more than 30 feet or so without sitting down. And then there’s the oxygen. And chest fluid. And kidney disease.

So, there I was, the 52-year-old son helping manage medical intervention levels for a guy who, for 75% to 80% of my life has steamrolled over the word “no” like an 8-cylinder pick-up over an unfortunately located baby squirrel. And, at that moment, it seemed completely normal. You see, he’s back to shaking badly enough to make getting a glass of water from the table to his mouth a challenge. Nurses now give him his pills two at a time in a spoon. He can still beat me at gin (o.k., maybe not the best measure of mental competence), but only if I do all the shuffling and dealing and don’t complain if he sometimes ends up with six cards in his hand instead of seven because he’s forgotten to pick up as well as discard.

It all seemed almost kind of normal until I got out to the car. That’s when I flashed back to David Byrne’s 1981 “Once in a Lifetime” lyrics. Byrne was 29 when he wrote those words describing that kind of existential crisis that can wash over you when you find yourself living in the middle of a situation you never would have predicted for yourself.

We’re just about a week shy of four years from the Friday I looked down at my ringing phone to see “St. Joseph’s Hospital, St. Louis,” show up on my phone’s caller ID. I picked up the phone to hear an extremely efficient ER nurse let me know that Dad had been admitted with multiple issues, and that he really shouldn’t be living on his own any more. For the better part of the last four years, he’s had a great life. That state seemed so normal that, I think, both he and I are running David Byrne’s lyrics through our head – to paraphrase, “how did we get here… my God, what have we done?”

What we did was live. We lived lives together that were combative and difficult, with humor and anger, raised voices and apologies. There was never quiet in this house and, as I’ve said before, I’m a guy who thrives on quiet. All I hear now is the Spanish guitar playing through a Pandora radio station. If the last four years hadn’t happened, this might seem perfectly normal. But those four years did happen, and I’m left wondering, “how did I get here?”

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This is a really brief post to recommend one of the best articles I've read recently on the issues caregivers face when making health-care decisions for parents. The pressure is extraordinary; no one is giving the other-side argument and all are emphasizing the miracle possibilities. I really think most doctors are simply committed to the oath they take to keep life living, but, as this article shows, there are societal costs that we simply have to face head-on.

The cost of dying: It's hard to reject care even as costs soar

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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?

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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.

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