A Personal Reflection on Elder Care and Life/Work Issues

Vol. 40, No. 1, January 2011
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Photo by daskar (H.J. Wesselink), Flickr

Photo by daskar (H.J. Wesselink), Flickr

by Pamela E. Mack, Clemson University

I heard a lot at the Montréal meeting about formal knowledge and local knowledge (one source for these ideas is James C. Scott, Seeing Like a State). We are learning as a field to balance our study of formal knowledge with an appreciation of local knowledge, whether in the form of laboratory practice or what farmers knew and scientists didn’t. I’m wondering if we can incorporate these perspectives not just into our scholarship but also into how we work as a community. The old formal expectations of professional life, where our personal complications should be invisible in our professional lives, might similarly be enlightened by respect for the local experience of our individual lives. The centralizing institutions where most of us work try to fit us all into a few standardized categories, but our lives are more complex than that.

What might the local knowledge side of our professional lives look like? We are not only employed or independent scholars, parents of young children or empty nesters. There is more individual variation than that; we may be facing our own health challenges or caring for an ill spouse or child. Some people like to keep their personal challenges private, but I suggest we would live in a richer world if there was more room for those things to be seen, if we want. We need role models who show us the many different patterns of work/life balance; we don’t have to fit ourselves into a few standardized patterns. Standard policies for parental leave are a start, but they don’t necessarily help someone who has a disabled child. What do we do with our experience that does not fit the rationalized framework? Often we try to hide it in public, which may work for some people but leaves others feeling simultaneously both inadequate and overwhelmed: inadequate because so much of our energy goes into things that are not seen professionally; overwhelmed, at least in part, because so much of our energy goes into hiding our private lives from our public interactions. How can we honor more the domain of local knowledge and individual experience?

So many people’s lives are difficult in so many ways, from acute illnesses to single parenthood to various kinds of trauma. I want to reflect on the issues raised by disabling chronic illnesses, particularly later in life, because that is where I am. Once my kids were both in school away from home, I expected to have time and energy for a more ambitious research project. Instead, my husband was diagnosed with Parkinson’s disease and the beginning of dementia. I’m finding this work/life balancing act lonelier than having small kids, so I’m trying to move it out into public view. There are characteristics of this kind of chronic illnesses that shape my experience. They last a long time and the course is, in the long run, inevitably downward. It is hard in our culture to face something that can’t be fixed. But it is also hard to face that this could easily be a 10- to 15-year journey.

There are several things it is useful to understand about dementia. We think of dementia as a person who can’t make sense of the world, but there are milder stages, sometimes called mild cognitive impairment. Cognitive impairment can result from diseases that cause dementia, from treatable medical issues, or from therapies for other kinds of illnesses, such as some cancer treatments. Smart people can often hide that they have cognitive problems for a long time, so the first clear signs are often personality changes or bad financial decisions. It is very common for people who suffer from cognitive impairment to react to the loss of control that they feel by becoming angry and/or paranoid. It is also confusing when close family member see the person as not able to manage things they used to do but friends (and sometimes doctors) say “S/he seems fine to me.”

As a person’s cognitive abilities decline, family members struggle to negotiate changing roles. My husband is no longer my partner. When children are caring for a parent, it can feel like having to swap roles and become the parent. Such changing roles are particularly hard because there is usually not one clear transition, but a gradual change. When do I decide that my husband cannot travel along with me any more, even if he thinks he can? I try to be willing to take risks in order to preserve his quality of life, but he still complains that I am controlling.

The situation of people with disabling chronic illness in the United States is difficult. Many families do not have long-term care insurance, though I would recommend everyone should buy it, perhaps around age 50. Medicare does not normally pay for supervision or help with activities of daily living or for assisted living or long-term nursing home care, even when those are necessarily because of illness. Medicaid will pay for long-term nursing home care (but usually not assisted living) after the assets of both spouses (excluding the home) are reduced to a certain level. I am required to spend my assets on my spouse’s care, including property held in my own name, before he is eligible for government help. Even assets protected by a prenuptial agreement are counted for Medicaid spend-down purposes.

When a person is diagnosed with dementia, the spouse (or child) usually goes through an intense period of learning about the disease and making arrangements for the future. My husband was 62 when diagnosed so we had to negotiate the disability retirement process. If the diagnosis comes early and the disease progresses slowly, that intense period may be followed by years in which those who are ill can still take care of themselves in the most basic ways, even though they need help with more complex issues. Ideally the caregiving family member could then say: “Things are in order for the future, now I can relax and enjoy the time I have with my family member and pursue my own interests.” I am finding that hard to do: I feel I am living in a changed world even if the burden is not yet as constant as it will be later.

For some reason I find it harder to negotiate being a spousal caregiver and a professional at the same time than it was to be a parent of small children and a professional. This may be partly because I believed that the burden of children would lessen as they grew older (though I’m not sure that is true) while I know that the burden of caring for my husband will increase. It is also because I had my husband as a partner while raising children but have no such partner in my husband’s care (our kids are 17 and 20). I’m trying to learn the skill of carrying on a project in bits of available time instead of not wanting to start something because it is too frustrating to be interrupted.

Chronic illness in a family is terribly isolating. I feel like an outsider sometimes, though when I am brave enough to talk about it I find that people do care. What can we do as a professional society? Would it be totally impractical for the society to state that refunds of conference registration are available to people who have to cancel at the last minute because of family or health issues? [Editorial note: HSS’s policy is to refund registration fees due to health issues if the conference has not lost money.] Might it make sense to have some gathering where people can choose between different tables to talk about life/work issues such as young children or retirement or spousal or elder care? Can we, perhaps, talk with each other about how to write letters for promotion and tenure files that acknowledge the difficulty (and in some cases the ill wisdom) of asking young people to keep to a universal publication schedule? There is a wealth of information in our individual experience that gets lost when it is simplified into formal knowledge.

What do we get from the richness of local knowledge? We get the resilience of a diverse ecosystem instead of the risks of monoculture (I’m leaning on Scott again). We find ways for individuals to contribute even when their situation is limiting, instead of dropping out. Or, rather, we make room for individuals to find ways to contribute rather than giving them the message that they don’t fit. It takes a change in culture, not because we have been purposefully discriminatory but because we have so internalized the expectations that we need to fit into nice neat categories. Life is much more complex than that.

I am very thankful to Jay for asking me to write this piece because it helped me out of my feeling that I was supposed to disappear. I don’t fully know why I felt that; certainly no one told me so. But I suspect that the solution to such fears is role models, others who might be willing to come forward with their unique perplexities. I don’t think I have many answers, but at least I can try not to be invisible.

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