Happy National "Appreciate This" Month, Part 1

"The true strength of the American family finds its roots in an unwavering commitment to care for one another."-President Barack Obama, 2009's National Family Caregivers Proclamation

November is National Family Caregivers Month. While we appreciate the sentiment, we find that the effort is a little shallow. We find the President's words particularly hard to swallow because the promise of a true universal health care system has been broken. It is also quite insulting that it was under President Clinton (the other guy who promised universal health care and didn't deliver) that such a month of recognition was established.

In countries where a universal health care system exists, there is help for families dealing with long-term illnesses and disabilities. (More on this in part 2 of this series.) This is not to say that our time living and working in Canada was that much better. There is still little recognition of the part that men play in caregiving. Also, there is still a belief that disability and caregiving is an all-or-nothing proposition, that caregiving only exists when total disability is in play and that the caregiver therefore forfeits any identity he or she may have had in taking on this new role. Thus, support in situations where the person suffering from long-term illness or disability still functions and works (read: has to work) is lacking.

Carl has been in the caregiving role far longer than Pattie has. Pattie became sick in 1997, and Carl has spent his time caring for her daily and largely planning his week, month, and life around caring for her daily ever since. Are there good days where little is required? Of course. Such is the nature of many chronic illnesses. But he has been on call, 24 hours a day, 7 days a week for the past 14 years, with few true breaks and practically no support from friends, the community, or social programs. In fact, much of that support system has questioned him with stereotypical expectations of male careers and no understanding how being on call 24/7 can contextualize one's work and achievements-something, by the way, feminists have pointed out regarding women's careers for 50 years now.

So, here is Carl's response to National Family Caregivers Month and the politicians, businesses, organizations and "well-meaning" people who have promoted it since 1994.

Don't tell me it's my month and talk all about me, the "caregiver," as if I had no voice and no ability to produce quality discourse of my own. I know what you think of me. I know EXACTLY what you think of me. You don't even try to cover it up. In this case, I will talk, and you will listen. It's in extremely poor taste to tell me it's "my" month and then speak for me.

There is a weird preconception in this society that caregivers can just keep on doing what they're doing, and to hell with them if they don't agree to the arrangement. I didn't agree to sit home and hold Pattie's hand every day for the rest of my life. I certainly didn't agree to do it the exclusion of any more financially advantageous activities. I did not agree, in a word, to lose. And I didn't agree to a life of what you have decided constitutes virtue and self-sacrifice.

Understand, first off, that I AM working. I have a career and a diverse portfolio. I have several enterprises, some with Pattie, some on my own. In the name of solvency and of the freedom to do SOMETHING I would like to do during the course of my life, I continue to work even in the face of Pattie's illness and even in the face of my own illness .

I didn't apply for the caregiver role; it was dumped in my lap while everyone mumbled and turned away. I did it with the understanding that it wasn't going to take forever to get Pattie situated and that I wasn't going to be expected to trash all of the other plans I made, some out of necessity, some out of freedom and joy, some out of both.

Now, I am still a full-time, live-in, unpaid caregiver. It hasn't changed over the years. And I am still pursuing various enterprises, projects, and so forth. I am still, to a great extent, the person I was before Pattie's illness began. If I have been conscientious in the caregiver "position," it is not just out of love for Pattie but out of a sense of duty and a general tendency I have to take pride in my work. It's called "competence," and it defines me.

Don't give me that crap about women being the "natural caregivers." We've known better than that for sixty years now. I was well aware by the time I was an adult that relationships required reciprocity. I took the principle as seriously as anyone has ever taken anything. I treated it like it mattered, and indeed, a certain amount of my time was spent figuring out ways to take it to the next level of competence and productivity. I am like that, and I am good at it. Don't tell ME I "just don't know how to take care of anyone" because I'm a man. You couldn't be more wrong.

Pattie, by the way, owes me nothing. She would not have, mind you, in any case. A duty to care is not something that requires reciprocation on the part of the person who is receiving care. However, when I became seriously and chronically ill myself three years ago, Pattie moved mountains to get me back to midseason form. She has supported me financially during that time and has assisted effectively in the therapeutic process. The reciprocation was out of love, not "payback."

A quick note regarding a "duty-free" love and reciprocation: Coupling is not meant to be one-sided. Relationships that are chosen must provide room for the growth of both separate identities as well as couple identity. It isn't okay for one partner to be shoved into a subsidiary role because the "law of love" prevents his complaining about it. Reciprocation must be freely given and benefits freely available, desires freely met. Responsibility and love dictate that the receiver of such freely-given assets should meet these with appreciation and with honor to the giver, not to mention an understanding that now is not the time to cross-examine on administrative matters too compulsively. This is not obligation, but necessary to the sustainability of a relationship of equals. (And wouldn't courtesy fit with the law of love as nowhere else? If you receive a gift, do you decline even to send a thank-you note?)

Please, don't pick a month and talk about "family" as if it exists outside the greater social structure. The problems I face are social in nature and need more than recognition to be solved. You can't be bothered to do anything but throw shovels of dirt on my head, but you do have the time and energy to cry about what I have to do to demonstrate that I'm not dead yet and to GET ON WITH MY LIFE. I resent the way caregivers are constructed. I have every reason to do so. Now fix it, or don't cry to me about what I have to undertake to do so.

Caregivers are the unpaid, overworked and under-resourced backbone of a broken system. It is upon our backs that many of the "sponsors" of this month of appreciation make their profits. We hope that if you take the time to recognize our efforts, you will also take the time to listen to us. But we also hope you will remember what we need are financial, social and personal resources. We need a paradigm shift in the culture to lift the artificial barriers to independence for persons living with disabilities and chronic illnesses. We also need a paradigm shift that recognizes, appreciates and rewards the efforts of those who work hard to help persons with disabilities and chronic illnesses on a daily basis.

In part two, we discuss how providing resources for family caregivers and supporting home care is an integral part of fixing the overall health care system.