Tag Archives: caregiving

Moving Forward with My One Regret

In all the reading, listening, and reflecting I’ve done on grief, I’ve found that it is typical to feel regret when someone dies. Folks often wish they had spent more time with the person who died, or been more patient, or approached a particular situation with them differently. I am lucky to feel relatively little of this, in part because the fact that Tom’s recovery took place during the pandemic meant that I was home with him and we were together nearly 24/7 for the entirety of the time between his stroke and death. It simply isn’t possible for me to have spent more time with him. I also am at peace with the caregiving I gave him, feeling very proud of the high level of care I was able to give.

There is one regret I find coming up with this new wave of grief I am experiencing: wishing I had responded differently to his pain. He was in constant pain. One particularly cruel aspect of his paralysis is that although he couldn’t control his left side, he could still feel intense pain in it. His left leg and arm were always painful in some way. Simply brushing against his left arm would cause him to wince violently. His left leg was wracked by excruciating muscle and nerve spasms. He also had headaches from both the stroke and his multiple skull surgeries, and pain in his right knee because his right leg had to work so hard to bear weight that his right leg couldn’t handle during PT sessions and the brief periods when he walked. His leg brace caused chafing all along his lower left leg and foot. He regularly experienced nausea and indigestion as side effects of his 14+ medications. On top of all that, he had sinus issues and a bit of arthritis, neither of which had anything to do with this stroke, but just piled aches and nuisance discomfort on top.

It simply wasn’t possible to medicate all that pain away and although he seldom complained, it was apparent that he was always in pain. He moved gingerly or sucked in his breath if I jostled his left arm or leg or withdrew into quiet resignation. It was hard to watch.

My typical response took two forms: One was to try to fix it. I badgered his doctors about pain relief medications and spent endless hours research non-medical treatments online. The other response was to try to control Tom’s reactions to his pain, making suggestions about what he should do or offering to make him some tea; sometimes those suggestions and offers veered into nagging territory. That would sometimes led to us bickering about the best way to deal with his pain. The most difficult arguments occurred when we bumped up against the cognitive changes Tom experienced after his stroke—sometimes he didn’t understand the logic connecting some medications to particular types of pain relief, for example, or he didn’t remember that some of his pain was caused by his brain even though he felt it in a limb. I would get frustrated and fixate on making him understand the logic, even drawing diagrams on a whiteboard.

In hindsight, I realize Tom knew I couldn’t fix his pain and what he probably really wanted was just for me to say, “I know, it totally sucks,” and sit quietly with him in empathy. At the time, that felt like “doing nothing.” I realize now, though, that the approach I took actually created distance between us and probably made Tom feel like he was dealing with both pain and a grouchy wife.

That is where my regret is: that in trying to help him, I actually added to his suffering and hindered intimacy and empathy. I’m not wrapped up in telling myself I “should” have behaved differently. I am giving myself grace and recognizing that I did do the very best I could under challenging circumstances. I am focused on learning from the insight I now have about my behavior and in using it to help me move forward.

In a Doug Kraft lecture I listened to this week on “fluidity of life,” Kraft suggests that one cause of suffering is the compulsion to “leap into trying to fix” things. He says, “Imagine an awareness that is deeply engaged and yet so loving that it has no need to control, change, or fix anything.” I connected this exercise immediately to my regret about how I responded to Tom’s pain. I wish I had allowed myself to put the energy that went into trying to fix Tom’s pain or control his reaction to it into simply being lovingly engaged.  

I know I did the best I could in the moment. But I am taking this hindsight and working to apply it to my grieving. I am not trying to fix or change or control my grieving. I am “Imagin[ing] an awareness [of my grieving] that is deeply engaged and yet so loving that it has no need to control, change, or fix anything.” Here’s what that looks like right now:

  • Just as I tried to make Tom understand logics that were beyond him, I notice myself trying to reason my way out of grieving at some moments, thinking, “There’s no logical reason for you to feel sad at this moment.” When I catch myself doing that, I shift my thinking to just noticing that I am sad in the moment.
  • Refraining from apologizing when I start crying or getting emotional during interactions with others. I try to make an explanatory statement instead, like, “My grief has been sneaking up on me lately and here it is again.”
  • Not trying to distract myself at all when grief hits and really sinking into it. It feels good, actually, to miss him intensely and to just let myself feel the pain of him being gone, to not deny how profoundly shitty it is that he died, and to acknowledge that grief is demanding my attention.

Caregiving and Being Unprofessional

My husband has a major surgery this morning. The surgery itself is scary and the recovery will be long and painful. He needs this surgery because of a brain infection. We are not looking forward to it and we’re not sure how long and how painful the recovery will be, only that it will certainly be longer and more painful that we would like.

Being my husband’s caregiver often requires me to live with uncertainty and uncomfortable feelings. The uncertainty makes it difficult to plan for the future—even next week—which can impact my ability to meet deadlines or show up to meetings. The uncomfortable feelings can make me impatient, irritable, unfocused, and weepy.

The person I’ve just described—someone who can’t meet deadlines, cancels meetings at the last minute, and is impatient, irritable, unfocused, and weepy—sounds like a terrible employee or student, don’t they? The very definition of “unprofessional.”

When I’ve had employees or students who exhibited these traits, I’ve sometimes thought that they need to develop time management skills, or they need more accountability, or they need to learn how to manage their emotions. Now that I’m the person in question, I can see that while these assumptions seem reasonable, they are completely off base. My time management skills are great and I have plenty of accountability. I think the emotions I’m experiencing are completely normal given the circumstances. There is nothing “wrong” with me. I don’t need more or different strategies; the fact is, I am living in a difficult situation and struggling with it is normal and healthy.

My assumptions about what causes “unprofessional” behavior were not just inaccurate, but they sometimes kept me from being the faculty member or supervisor I want to be. I thought, “Well, I’m not going to put in more effort than they are. If they don’t care about the assignment, I’m not going to knock myself out giving detailed feedback.” I was sometimes dismissive or less invested in their success.

As a professor and supervisor, I want to more consistently do the following:

  1. Ask the person in question what is behind the behaviors I’m seeing rather than assuming it is laziness, lack of discipline, disengagement, unprofessionalism, and all the other negative traits that I now see are euphemisms for “someone who has a complicated life that I don’t understand and actually have no right to the details of.” And if they don’t want to talk about it, accept that it’s really none of my business.
  2. Put my energy into supporting the person rather than devising “appropriate consequences.”
  3. Find ways to maintain boundaries around my own time, energy, and other resources that don’t hinge on assumptions about what drives the behavior of others.

Starting Points for Learning More about Disability and Accessibility

This week and next week my posts will be a little shorter than usual because of two activities that can take up a lot of time and energy for disabled folks and their caregivers: (1) arguing with doctors and insurance companies and (2) undergoing medical treatment. This week arguing is the big activity and next week it’s surgery. Ooops, did I say arguing? I meant advocating.

So far this week, I’ve logged about two hours each day arguing or doing research to support my arguments that my husband needs a particular appointment, medication, or treatment. A lot of it has been around getting my husband an orientation for his new motorized wheelchair, which we were told would automatically happen when the wheelchair was delivered. Instead, the wheelchair was dropped off, we were handed a manual, the headrest was adjusted, and that was it. The wheelchair is a very complicated machine and the manual is very dense. My husband’s disabilities make it hard for him to read. We’ve figured out a few of the features, mostly by trial and error, but I’m sure there are things we haven’t yet figured out. An ongoing issue is adjusting the foot rests, which are high enough that my husband accidentally smashed one into the oven door, breaking the door into a million little pebbles of glass. We obviously need the orientation!

For this week’s shorter post, I am sharing some of my favorite sources for folks who want to learn more about disability and accessibility in the classroom (and beyond). There are many brilliant people writing about disability these days (yay!) and my aim here is not to mention all of them. The sources I’m highlighting here are good ones, I think, for folks who are newish to thinking about disability and accessibility—in other words, these are some good starting points.

On the less scholarly side of things, here are my favorites:

On the more scholarly side of things, here are a few articles and books:

And some authors I recommend, in addition to the authors of the works I’ve noted above:

Specific Actions to Change the Way Caregiving is Understood in (Academic) Workplaces

I was both heartened and saddened by the responses I received to my last post on being a caregiver in academia. Many fellow academics and plenty of folks in other fields reached out to me to say that they, too, are caregivers and they wish that part of themselves didn’t have to be so compartmentalized. With that in mind, this post focuses on specific actions we can take to change the way caregiving is understood in academic (and other) workplaces.

Before I get to those recommendations, however, I want to mention a piece on caregiving that the New York Times published just a few days after my post: “The Costly, Painful, Lonely Burden of Care” by Mara Altman. Altman reports that the economic value of caregiving by family members is upward of $470 billion a year, and the bulk of this work is performed by women. This means that women are more likely to suffer the consequences I mentioned last week—stigmatization and professional isolation—as well as burnout, social isolation, financial consequences, and “negative health impacts.” Altman interviews Kate Washington, author of a new book on burnout, Already Toast: Caregiving and Burnout in America, about these costs. I was particularly struck by a statement Washington made on how the economic value of all the free caregiving provided by mostly women is minimized:

There is a narrative that the caregiving work we do is invaluable and the gift of caring is its own reward, but the flip side of something being priceless is that you paradoxically strip it of all its value. It’s so valuable that we can’t put a monetary price on it, which then takes away the economic worth.

Mara Altman, “The Costly, Painful, Lonely Burden of Care”

Because we live in a neoliberal society, we are conditioned to devalue anything without economic worth. You would think that academics, of all people, because so much of the work we do we do for “free” (all that service!), would be sensitive to this, but no, neoliberalism is in the air we breathe and so we are conditioned to not notice these discrepancies.

Which brings me to those specific actions I want to focus on:

  1. Talk about caregiving in your normal voice. Former First Lady Rosalynn Carter highlighted how normal caregiving is when she said, “There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.” It is very likely that every one of us will be or need a caregiver in our lifetime. In other words, caregiving is normal, not strange or embarrassing or the result of poor choices. Acknowledge caregiving as a valuable activity. If you are not a caregiver, talk about it in your normal indoor voice rather than a hushed one. Every time you talk about caregiving in a hushed voice, you imply that it’s something that should be kept quiet. If you are a caregiver, and if it feels safe to you to do so, talk about caregiving the same way you talk about your other non-work activities. If the only time we mention that we are caregivers is when we need support, the idea that caregivers are needy drains on productivity is reinforced.
  2. Notice and label ableist tendencies that stigmatize caregiving. These tendencies include bragging about not taking leave, shaming folks who do take leave, and assuming that all time that is not accounted for by time-bounded work activities is “available.” When I catch myself doing these things, I find it helpful to identify the assumptions I’m working from and fact check them, so I might say to myself, “Seeing that colleague as lazy for taking so much leave assumes they don’t work hard when they are not on leave. Is that true?”
  3. Connect with others who are caregivers in academia. This is tough because, as I said last week, we don’t talk about caregiving in academia and folks without tenure and others in vulnerable positions may feel the risk involved in making the caregiver part of their identity visible is too much. When those of us who do have job security and other privilege make the caregiver part of our identity visible, we make it easier for others with less privilege to do it. I’ve added the word caregiver to my twitter profile and website tagline to make that part of my identity more visible and make it easier for other caregivers to find me.
  4. Create workplaces that support caregivers. One of the simplest yet most powerful ways to support caregivers is to talk about caregiving. As I said last week, when we don’t talk about caregiving, it becomes harder to talk about caregiving. The opposite of that is also true: when we talk about caregiving, it becomes easier to talk about caregiving. When it’s easier to talk about caregiving, it’s also easier to identify caregivers in the workplace, and it’s easier for them to ask for the support they need. For faculty, one of the most challenging forms of support we need is teaching coverage; when I became a caregiver, a colleague who is herself a caregiver told me she was available to cover my classes if I needed it. When such a program doesn’t exist, the free labor of caregiving leads to the free labor of kind colleagues who are willing to cover classes. All that free labor tends to be women’s free labor. A formal program to make teaching coverage available to those who need it would go a long way toward supporting caregivers and closing an equity gap in academia.

Being a Caregiver in Academia: Stigma, Loneliness, & Silence

The Caregiver Action Network estimates that 29% of the U.S. population fulfil caregiver roles, spending about 20 hours/week taking care of a chronically ill, disabled, or aging person. That care can include bathing and grooming, dressing, toileting, preparing meals, feeding, housekeeping, managing medications, transporting, accompanying to appointments, functioning as a de facto physical/occupational/speech therapist, advocating, and more. The person may be a child, parent, spouse, or friend. The work can be exhausting and never ending, and/but it is absolutely crucial for the wellbeing of the person being cared for.

Given that 29% of the U.S. population is involved in caregiving, I very likely have many colleagues in academia who are caregivers. I know of only two. We don’t talk about this. We talk about our kids’ accomplishments, our travels, what we’ve read lately . . . but we don’t talk about caregiving. When I look for academics writing about caregiving, I find scholarly research about caregiving and caregivers, but when I try to find blogs and other personal, informal writing about being both an academic and a caregiver, I come up empty. The closest thing I have found is this story about Harvard professor Dr. Arthur Kleinman’s experience being his wife’s caregiver.

As with many things, when we don’t talk about being a caregiver, we have a hard time talking about being a caregiver. In other words, the very fact that caregiving isn’t spoken of much in academia beyond it being the subject of scholarly research is itself a barrier to talking about caregiving. Because, as Jay Dolmage has so eloquently explained, “disability has always been constructed as the inverse or opposite of higher education,” talking about being a caregiver means identifying oneself as being engaged in activities that are stigmatized in academia. Dolmage charges that “the ethic of higher education still encourages students and teachers alike to accentuate ability, valorize perfection, and stigmatize anything that hints at intellectual (or physical) weakness.”  

I shared a story last week about a colleague who took pride in the fact that she hadn’t taken any leave when her mother was in hospice. That colleague was her mother’s caregiver, but didn’t talk about being her mother’s caregiver except to brag that she hadn’t missed work while caregiving. When we brag that we didn’t take leave days to be a caregiver, we perpetuate the idea that caregiving is not a legitimate reason to take leave, which makes it harder (for ourselves and others) to take leave days to be a caregiver.  When we do take leave days for caregiving, we may be reluctant to talk about it, perpetuating the silence around caregiving in academia and further isolating academics who are caregivers.

There are aspects of academia that would seem to lend themselves well to being a caregiver. For example, I have always noted the flexibility of my schedule as an aspect of being an academic that I appreciate. Theoretically, I should be able to easily fit in the hours spent taking care of my husband around the few responsibilities I have as a professor that are time-sensitive. More and more, however, I’ve been noticing how that flexibility is a double-edged sword. On the one hand, I often have some say over when I teach and can schedule research, service, and “life,” including caregiving, around classes and office hours as I see fit; on the other hand, I can be seen as on-call during all the times I don’t teach. As a particularly egregious example of this “being on call” mentality, earlier this semester, my entire department was told by the dean and provost that we needed to be available for 60 hours of Friday meetings during the semester and that because none of us taught on Fridays, they knew we were “available.” This assumes that all time not spent teaching is “available” to the University.

Like many caregivers, I find my husband’s needs highly unpredictable. Many of his needs can be scheduled, such as dressing and bathing him. But there are many random things that come up—his left arm, which is paralyzed, may get caught in between the rungs of a chair; he may need something that is out of reach even with his grabber tool; one of our dogs may snag his lunch from his left side, which he is unaware of because of his left neglect, and he suddenly discovers that his food is gone—that I cannot predict. On the other hand, there are times he can go four or five hours without needing me. The unpredictability of his needs can mean that my calendar appears to be open for meetings and other work, but I will not, in actuality, be able to attend a meeting from beginning to end.

The stigmatizing of caregiving and the on-call mentality are both markers of ableism in academia. Ableism assumes that everyone is able-bodied, that disability is a sign of inferiority, and that illness is a result of poor choices. When my calendar appears open but I am in and out of a remote meeting, the assumptions of ableism encourage my colleagues to see my sporadic attendance as a sign of poor planning or unprofessionalism. When I talk about being a caregiver, the lack of familiarity with how to navigate a conversation about caregiving can lead to colleagues being hesitant to even ask me how I’m doing. I recently learned that several colleagues had asked another colleague how I was doing; when she suggested they ask me directly, they indicated that that was too awkward. Ironically, given that nearly 1/3 of the U.S. population is involved in caregiving, it’s likely that one of those colleagues is themselves a caregiver.

I wish I knew who they were, but we don’t talk about these things.

Taking (or Not Taking) Leave in Academia

I want to start with a few stories about taking leave in academia:

Story #1: When I was an adjunct instructor, teaching 6-8 composition courses a semester at two different community colleges to make a living, I had a stroke. My doctors told me to take six weeks off and that I would probably recover slowly over the next year. Luckily I had health insurance, which covered the bulk of my medical expenses, but I was in a panic about how I would earn a living.

When I called the department chair at one of the colleges to let her know about my situation, and before I had mentioned how long my doctor said I would be unable to work, she mused out loud, “I suppose we’ll need to replace you if you’ll be gone more than a couple of weeks.” I immediately assured her I’d be back in two weeks. I needed that job and couldn’t take a chance that they’d replace me for that semester and beyond. My first day back at work, my then-husband accompanied me, holding me up when I couldn’t stand on my own, helping me keep track of time and conversations, which was still challenging for me, and carrying my teaching materials.

Story #2: A few years ago, a colleague on my campus proudly told me that she hadn’t taken a single day of leave when she had cancer or when her own other was dying in hospice. When she told me this, she was chair of her department and expressed frustration that the faculty in her department took leave for every cold and minor illness.

Story #3: When my husband had his stroke in June 2020, I became his caregiver. As a full professor, I have health insurance, access to FMLA job protection, and enough sick and annual leave saved up that I can comfortably take time off from work to care for him without my pay being reduced. Avoiding a pay reduction is important because since his stroke, he’s been unable to work and while disability might be approved for him sometime soon, it hasn’t been yet (we applied in September!), and even if/when it is approved, it will only make up a portion of his lost salary. Since August, I have taken about 6-10 hours/week off from work, with complete support and understanding from my supervisors (as a faculty member with administrative duties outside my department, I have two supervisors: a department chair supervises me in my faculty role and an AVP supervises me in my administrative role). The only sticky point came when my department chair expressed concern that there was no department policy allowing me to reduce my service commitments in the department without it being potentially held against me at my next review. Because I’m already a full professor and have overdone service historically, I’m comfortable taking my chances on having a semester with a lighter service load.

These three stories show how deeply embedded ableism is in policies and practices around faculty leave. When I had a stroke as an adjunct instructor, financial insecurity made me feel the need to place my chair’s concern about having to find another instructor to teach my classes ahead of my own doctors’ advice for my recovery. Going back to work two weeks after my own stroke was dangerous and stressful, but it felt less dangerous and stressful than potentially losing my job. It’s impossible to say what impact going back to work so quickly had on my recovery; I do know that once the idea was put in my head that I would be replaced if I missed too many classes, I never cancelled a class, regardless of how ill or contagious I was.

I’m sure that when my chair mused out loud about having to replace me, she was thinking about students needing to be taught. However, the assumption that an adjunct instructor will not get sick or need time off relies on the idea that being sick or needing time off is not normal. In fact, in this particular situation, it was viewed as cause for being dismissed.

I have a colleague in a non-tenure track full-time teaching position who is a caregiver for a loved one; she does not have the same access to paid leave that I have. She and I are both full-time faculty and we are both caregivers; I can take 6-10 hours/week of leave to care for my husband without taking a pay decrease but she cannot. Why should we have different access to leave when we essentially do the same job? Why does my institution view it as more normal for me to need time off than for her?

Now that I do have access to leave, I’m able to make decisions about taking sick days for myself or to care for my husband without the added stress of worrying about how our finances will be impacted. Without leave, I would quite possibly become resentful about the high level of care my husband needs, or I would be regularly stretched too thin to be a good caregiver or a good professor. As it is, even with leave, I have had moments of burnout. Even with leave, I am judicious about taking it, and I typically bring work with me to my husband’s appointments so I can respond to student papers or plan a class in the few minutes between arriving at an appointment and being called in to see the doctor. I’m still aware that even with leave, there’s a perception at my institution that “good” employees don’t take leave.

This is exactly the attitude that was expressed by my colleague when she bragged that she hadn’t taken leave during her own or her mother’s health crises. She shared that story to highlight her devotion to her job and her professionalism, which she contrasted with the “less professional” attitudes of the faculty in her department who did take days off when they were ill. She did not express compassion for people who got ill, but rather, found fault with them. This is a class ableist thought: people who do not have ideal health are not as worthy as people who do or people who can pass as if they do. My colleague, remember, did not have ideal health and neither did her mother, but she worked hard to pass as if she and her mother did.

In an ableist model, getting ill or taking leave are framed as shameful, unprofessional, indicative of a lack of commitment to a job.

Even in the third story, which is a much happier story than the other two, there is the sticky point about whether a reduced service load while on leave can be negotiated. I am able to take leave, but the expectations for my service are not changed by me working less. In other words, I am still expected to do 100% of my service work, but in less time. Because of the privilege afforded me by being a full professor, I am not particularly worried about repercussions in my next review, but someone without tenure or someone hoping for a promotion would rightly worry.

In this situation, the ableist assumption seems to be something along the lines of, “We’re already giving you time off, now don’t put an unfair burden on your able-bodied colleagues by slacking on service.”

How do we change the culture around faculty leave? Here are my ideas:

  1. Fight for all employees to have access to paid leave. Yes, even adjunct instructors. Start from the assumption that people will get sick rather than from the assumption that they won’t.
  2. If you have access to leave, take it when you need it. The more normalized it becomes for people to take leave, the more normalized it becomes for people to take leave.
  3. When colleagues take leave, be supportive. Don’t question whether they “really” need the leave; assume that they do.
  4. Work to change retention, promotion, tenure, and other review policies to account for employees taking leave. Don’t treat the situation in which a colleague takes leave as an anomaly; plan for it.

A Re-Reboot (or Why I’m Still Pissed Off about the Same Old Things)

I rebooted this blog on April 22, 2020 with the intention of posting every week on resisting hetero-patriarchy, racism, ableism, and other hegemonies in academia and sometimes beyond. I did not intend my June 1, 2020 entry to be my last, but 2020 threw me a little curve and changed my priorities when my amazing husband, Tom, had a massive stroke on June 7.

The stroke was on the right side of his brain. He was left paralyzed on the left side and with a neurological condition called Left Neglect, which means that his brain doesn’t process things that happen on his left, so he doesn’t see things to his left, hear sounds that originate on his left, etc.

It’s been nearly nine months and Tom has worked hard every single day to recover. He spent six weeks in ICU, the hospital, and then rehab learning to swallow, sit up, and take his first few tentative steps. He returned home in late July and has continued to put intense effort into physical therapy, occupational therapy, and speech/cognitive therapy. He’s regaining some mobility and strength in his left leg, so he is now able to walk short distances with a walker or cane, mostly in the house. His PT timed him at 1 minute and 53 seconds to get up from a chair, walk 20 feet with a walker, and sit back down in the chair, so it’s not a practical mode of transportation at this time, but it does seem reasonable to think he’ll be able to walk on his own around the house, at least, at some point in the future.

Cognitive issues Tom is struggling with include memory problems, trouble understanding numbers, including time, and complications caused by Left Neglect.

I am on partial leave from work to allow for my caregiving responsibilities now. Tom is unable at this time to dress or bathe himself. I manage his doctor/therapy appointments (at least six appointments every week), insurance issues, and his medications (he’s currently on 16). I am his chief cheerleader, dietician, homework coach (speech therapy involves a ton of homework), and general wrangler.

This experience has given me the opportunity to draw on some of the advice I’ve offered on this blog—saying no, primarily. It’s also deepened my commitments to resisting hetero-patriarchy, racism, ableism, and other hegemonies. I’ve been lucky to have access to FMLA leave at my job to support my reduced work, which I’m both grateful for and pissed off about because my non-full time colleagues don’t have access to the same thing. My awareness of ableism is heightened by the frequent and maddening barriers my husband faces in navigating the world from a wheelchair. Despite all the proclamations of anti-racism in academia in the past year (including at my own university, which declared itself “an anti-racist university” without actually doing anything anti-racist) little has actually changed. These experiences and others since my husband’s stroke have continued to piss me off about the same things I was pissed off about before his stroke.

I’m hereby rebooting this blog again—does that make it a re-reboot?

I’ll continue with the same plan I had when I rebooted last year: to post once a week on issues related to resisting hetero-patriarchy, racism, ableism, and other hegemonies, mostly in academia but sometimes beyond.