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.
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.