Tag Archives: caregiving

Accessibility + Dis/ability, caregiving, grieving

What Being a Caregiver Taught Me About Gracefully Receiving Help

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I’ve talked before about how accepting help from others benefits those who give the help as well as those who receive it. When I was my late husband’s caregiver, I was giving help on a large scale—and I was receiving the benefits of that on a large scale, too.

I spent most of the last year of my husband’s life taking care of him. The entire left side of his body was paralyzed. Without use of the left side of his body, he couldn’t roll over in bed or get dressed or undressed. I woke up several times during the night to reposition him in bed, I dressed and undressed him every day, I helped him sit up, get out of bed, go to the bathroom, and move from his wheelchair to the bed or vice versa.

I also had to take into account the cognitive impacts of his stroke. His speech was slower than before the stroke and his memory was undependable. He also had a mysterious condition called left neglect in which his brain didn’t process anything that happened to the left of his midline. He would start reading from the middle of a line of text because his brain didn’t process the left side of the page. He would eat all the food on the right side of his plate and ask for more, even though the left side his plate hadn’t been touched. I had to constantly remind him to look to his left.

It was a lot of work. Caregiving is never ending. Those facts are true, but what they don’t capture is that it can also be intensely connecting. I was exhausted AND I savored every moment that I got to care for him.

Many people have said to me since my husband died “I’m sure you miss him but don’t miss the caregiving,” but in his last year, the two were inseparable. Being with Tom meant always being on alert for him dropping his phone, losing track of something that was right in front of him because it was slightly to his left, having a sudden urgent need for the bathroom, becoming disoriented and anxious. It was hard for both of us. But when I remember him, my mind goes first to those memories—because it wasn’t only hard for both of us. It was also incredibly intimate and connecting.

Our communication skills got gold-medal good. We really learned what it means to ask for what you want, to not take each other for granted, and to not expect your partner to be a mind reader.

I recently read a book by Sarah Smith Rainey called Love, Sex, and Disability: The Pleasures of Care that moves beyond the exhaustion and exploitation of (mostly female) caregivers and addresses how much true pleasure can be involved. Rainey studied married couples in which one partner was the caregiver for the other. Rainey’s research is groundbreaking because her research looks at the experience of the cared for as well as the caregiver. Typically caregiving relationships are assumed to be one-sided, with the caregiver doing all the work and the cared for doing all the receiving. In fact, many of the couples Rainey interviewed reported that their relationships were reciprocal, which is what I found with my late husband.

He allowed me to take care of him, which is much more complicated than it sounds. As you can imagine, going from his pre-stroke state of being fiercely independent to his post-stroke state of needing the level of care I described above was a huge adjustment for him. I was amazed at the grace he exhibited in accepting the shift. Rather than stubbornly resisting my caregiving—which, frankly, is what I expected him to do—he put his energy into showing appreciation all day every day for my caregiving. That was how he took care of me.

The experience helped me make a commitment to my daughter: if/when I need caregiving at some point in my life, I will be as graceful and accepting of it as Tom was. I got to practice that commitment last fall when I had brain surgery and my daughter took care of me for a week. She had to remind me a few times of my commitment, but I did ok overall, and it actually got easier each day.

Most of us who live long enough will find ourselves in need of caregiving at some point. We can make it a nightmare for everyone by being stubborn and refusing to accept help or we can receive the help gracefully.

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Moving Forward: Adjusting to New Rhythms

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I think a lot about the distinction between moving on and moving forward after someone dies. Moving on means putting the loss behind you and going back to living life the way you did before the loss occurred. Moving forward is quite different; it is integrating the loss into your life so that grief isn’t necessarily something you stop experiencing but you learn how to carry it with you into your future. Moving forward acknowledges that the loss experience will change how you live your life.

Being widowed has changed me. In October I wrote about trying to come to terms with the fact that I will never again be who I was when I was with my husband.  I talked then about how I still wanted to be the person I was before my late husband died but that I was trying to focus on who I am becoming as a result of the loss. I noticed then that I was more open and vulnerable and more comfortable taking about death.

Lately, I am struck by how different the rhythm of my days is now. Widowed people often find that the loss of their loved one impacts their lives in this way.

For my entire relationship with my husband pre-stroke, I went to bed around 9 pm and woke up at 5 in the morning because he was an early riser and liked to chat in the morning. I learned that serious discussions with him went better in the morning than if I waited until after work. Now that I don’t have to get up so early, I find myself sleeping until 6 and going to bed around 10 pm, but every night when I go to bed, I second-guess my alarm setting. Waking up at 5 for so long made that feel normal and setting my alarm for 6 feels off.

Other habits are changing to accommodate how my life is now. Tom enjoyed watching movies and TV, but I prefer to read, so most nights and weekends I read. What I eat has changed significantly. Tom was a meat and potatoes guy—except for when he was eating nachos or Mexican food, which he adored. Now I eat almost no meat. I haven’t eaten nachos in nearly two years. (The thought of nachos makes me smile, though—one time when I got back from being out of town for a few days and noticed that all the meals I had left for him were uneaten but the cheddar cheese and chips were gone; he admitted to having eaten nachos every night for the five days I was gone).

The shape of my days is different. After his stroke, my day was scheduled around taking care of him. In the morning, I would wake him up, help him sit up and bring him his coffee and his morning medications. We would chat about the day and then I would walk the dogs and work out while he drank his coffee. After that, I would get him dressed and help him get into his wheelchair. He would watch TV, read, or sharpen knives (for real, that was his main hobby after his stroke) while I worked in my office for a couple of hours. I would take a break at some point to help him stretch his arms.

At midday, I gave him his midday medications and made him lunch. He usually had speech, occupational, or physical therapy in the afternoon, so I would help him go to the bathroom before that. If he had speech therapy, I worked in my office, but I usually participated a bit, even if just to cheer, in his occupational and physical therapy sessions.

In the evening, I made dinner and we ate together. Then I got him ready for bed and brought him his evening medications. After he was in bed, I would massage his legs and feet.

My entire day was structured around providing care to him. It was hard work but work I loved. The intimacy of caring for someone at that level is beyond words. When my daughter was born and depended on me for everything, I remember feeling similarly and I assumed part of the connection was that she had been part of my body for nine months. But the connection I felt to my husband while taking care of him was the same—finding every sight, smell, and sound utterly delightful, feeling absolute peace and completion when he was comfortable and happy.

As I continue moving forward, I notice intensely contradictory feelings. On the one hand, I am very happy, feeling loved by and connected to so many people and living a life that is full of joy and peace. On the other hand, I am achingly aware that as I move forward each day, I also move farther away from the beautiful life I had with my husband. I miss having those moments of care punctuating my days.

I recently remodeled my bathroom and had a tile installed that is inspired by the Japanese art of kintsugi, in which broken pottery is repaired with gold, leaving the restored piece with deep gold veins that call attention to themselves. Every time I step into that bathroom and see the tile, I am reminded that I am turning the pieces of my life into something new and beautiful. Those pieces were shaped by the love I had with my husband and they still exist, but they are held together now with something new that I am creating.

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Anticipatory Grief: Grief for Someone Who Isn’t Dead Yet

I mentioned Kirsten Johnson last week, in my post about Anderson Cooper’s podcast. Johnson is a guest on episode 5, which focuses on anticipatory grief—grief for someone who hasn’t yet died. Johnson’s description of anticipatory grief in the podcast is perfect: “It’s this crazy feeling of imagining the person dead while they’re in front of you and then all the feelings that that brings. There’s a lot of guilt in it. There’s a lot of just confusion in it because it’s almost sort of unbearable. The fact that they’re not quite themselves already and then the fact that it’s going to get worse, it’s like you’re on quicksand or something.”

I did not know that I was experiencing anticipatory grief between the time that my husband had his stroke and died. I knew that every moment was precious, and I constantly felt like I needed to be present, memorizing every detail with him because I didn’t know how long I would have with him. I began journaling during this time as a way to keep track of the details I knew I’d want to remember. Every moment felt precarious. He had profound sleep apnea brough on by the stroke, so we never knew if he would make it through the night. He was always at risk of falling. He was at risk for another stroke. I felt awful, thinking all the time that I needed to remember this moment in case he dies tonight.

The year was maddening because he was startlingly present in a way he hadn’t been before the stroke. I was, too. We were more tuned into each other’s emotional states, checking in regularly with each other about fears and worries. Because of my caregiving role, he had no privacy from me, and we chose to laugh about that—and he sang about it. The injuries caused by the stroke seemed to make it easier for him to be vulnerable with me. He began a tradition of ending each day by telling me what he was most grateful for about me. At the same time that we were experiencing this incredible closeness and intimacy, he was wasting away in front of me. He lost a tremendous amount of weight, he slept all the time, his memory was no longer dependable. There were times I felt like I could see him fading away and I mourned the loss of him even though he was still with me. That is anticipatory grief.

Johnson made a documentary called Dick Johnson is Dead, which is available on Netflix, that captures anticipatory grief with startling clarity. The Dick Johnson of the film’s title  is Kirsten Johnson’s father, and he’s not dead yet but he is in his 80s and had dementia. The film stages Dick Johnson’s death several times, using comic relief to help Kirsten come to terms with his eventual death.

I watched the film last weekend and laugh-cried all the way through it. It’s an incredible film, portraying the deep love Kirsten Johnson has for her father, and showing his aging and dementia without veering into pity. There is no sense that we should feel sorry for Dick Johnson. He is enjoying life to the fullest, getting lots of quality time with his daughter and grandkids. The film manages to show the joy Dick Johnson finds in his life, the joy Kirsten Johnson finds in Dick Johnson being alive, and the pangs of loss Kirsten finds in Dick’s fading away in front of her.  

One scene in the film is of a staged funeral for Dick Johnson, in which he stands behind church doors, listening to the glowing eulogies people deliver in his honor. Even though they know he is still alive, they get choked up expressing what Dick Johnson has meant to them. Dick Johnson himself gleefully listens to the eulogies and then enters the church to applause. While it’s an amazing and affirming experience for everyone, the image of Dick’s best friend sobbing after delivering his eulogy is hard to shake. That’s anticipatory grief: the person is still here, but you’re already trying to figure out how you’ll carry on without them.

In the podcast, Kirsten Johnson says how much it means to her that because of the film, people feel like they know her father. I have the same experience—I love when people tell me that through my blogging or through the obituary, they feel like they know my husband a little bit. That’s one of the ways I keep him alive.

At the end of the film, Kirsten Johnson says, “Dick Johnson is dead. Long live Dick Johnson.” It’s a reminder that a person dies, but their memory lives on. Tom DeBlaker is dead. Long live Tom DeBlaker.

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Embracing My Vulnerability + Awkwardness as a Widow

I posted last week about working to come to terms with the fact that I am no longer the person I was before my husband died. As I was pondering that, an image popped up in my twitter feed of a pink satin heart broken open and imperfectly stitched back together. That image gave me a visual for the me that is becoming since my husband died.

I think when your heart is broken open the way it is when your partner dies, you can either batten down the hatches or go out into the world with your heart exposed and open. The before-I-was-a-widow me would have battened down the hatches. That’s what I did when my mother died. I hunkered down in my grief and withdrew from people. That was 1982, and attitudes toward grief then were even worse than they are now. I don’t recall any adults reaching out to me when my mother died besides the middle school guidance counselor, who seemed relieved and sent me back to class after I told her I didn’t want to talk (coming from a dysfunctional family, I had learned well that you don’t talk to others about what happens at home).

When my husband had his stroke and my fears about losing another loved one began knocking on my door again, I knew I had to do something different. Battening down the hatches had been a dismal failure, leaving me isolated and angry. That’s why I made my commitment to turn toward and relax into grief. Now I can’t seem to stop myself from being open and vulnerable. Exhibit A: this blog.

I talk about my late husband all the time and about death in general pretty often. I love spending time with others who are comfortable talking about death and its aftermath. I think that’s why being with other widows is so powerful. This past weekend, I was lucky enough to spend a good part of the day with family friends who lost a member to suicide a few years ago. Being able to talk openly and conversationally about our shared experience was wonderful. We remembered our loved ones who have died, shared happy memories of them, acknowledged how much it sucks that they are gone, and commiserated about how hard it is to find others who are comfortable talking about death.

Talking about death all the time can be awkward. The before-I-was-a-widow me was uncomfortable with my imperfections and many awkward traits. I’ve been fascinated since my husband’s stroke with the idea that the imperfections or perceived brokenness in something is actually a thing of beauty. Leonard Cohen sings in “Anthem” that everything has a crack in it—“that’s how the light gets in,” reframing imperfection as beauty and opportunity for inspiration. There’s the Japanese art of kintsugi, in which broken pottery is repaired with gold, leaving the restored piece with deep gold veins that call attention to themselves. While reading Maggie Nelson’s The Argonauts, I learned that “in bonsai you often plant the tree off-center in the pot to make space for the divine.”

Outside of bonsai, circumstances may push you off center, like my husband’s stroke did. The most remarkable thing my husband did after his stroke was accept that he needed me to be his 24/7 caregiver. The most remarkable thing I did was accept that I needed to be his 24/7 caregiver. That embracing by both of us of our dramatically changed roles and circumstances made it possible for us to bypass resentment and guilt and grow closer and more in love. Our last year together provided plenty of space for the divine.

All of these concepts allow me to see the stitched together heart not as something that was broken and mended but as a beautiful creation on its own. I can see my grieving self as not broken by grief but changed by grief into something new and beautiful. All my weird awkwardness is a way to make space for the divine.

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Showing Up for Death

Watching someone die is hard. Sometimes we know we are watching someone die—perhaps they are in hospice or a medical professional has estimated how much time they have left. Other times, we may notice a slowing down and have a creeping realization that this person is moving toward death.

I watched my husband die for 53 weeks after his stroke. He faded very slowly, in fits and starts, so that it was possible for me to convince myself that he wasn’t actually dying at all. He maintained his vigor and bravado right up until the end, even when he had stopped eating. His death was a shock to me, although I knew that from the moment of his stroke, I was “walking him home,” an expression spiritual teacher Ram Dass used to express the shared experience of embracing the inevitability of death.

As painful as it is to watch, I think being with someone in their final months, weeks, days, or moments is an honor and even a responsibility. As much as we may want to turn away, I think we need to bear witness to death. Death is a totally natural part of life. Witnessing it normalizes it. Showing up for a person who is dying is one way to show respect for life itself. A person who is dying isn’t dead yet and many of their needs are like those of the rest of us: they need to be seen, heard, and acknowledged; they need to feel loved and valued; they need to feel remembered; they need to not feel abandoned.

I think one reason people avoid showing up for death is that they don’t know what to do. People who are dying are often less able to participate in conversations. We may wonder what to talk about with a dying person or how to engage them. We may feel pressure to keep a conversation going but feel nervous about which topics are “safe.” Here’s what I learned in my husband’s last year: it is easy to meet the needs of people who are dying if we focus on those needs rather than our fears.

Every one of those needs can be met by simply showing up. What is the most basic way of letting someone know they are seen and heard? Being there in person or on the phone with them. What is the most basic way of showing love? Making the effort to be there in person or on the phone. How can you let someone know you remember them? Be there. How do you let someone know they haven’t been abandoned? Sit with them.

Simply sitting in silence with someone who is dying is completely ok. I spent hours and hours in silence with my dying husband, simply holding his hand. When he had lost consciousness and was being kept alive by a ventilator, I told him over and over, “I’m right here.” In other words, I was not a brilliant conversationalist. Cake’s post on watching a loved one die emphasizes that it’s your presence that matters, not the conversation, and that silence is completely ok.

If you’re interested in learning more about dying and showing up for dying, I highly recommend Sallie Tisdale’s book, Advice for Future Corpses (and Those Who Love Them). Tisdale is a Buddhist and brings Buddhism’s characteristic lack of sentimentality about death to the subject. (In my introduction to Zen Buddhism in 1997, the teacher led with, “Let’s face it: we’re all on a one-way trip to the boneyard.”) She offers concrete suggestions for what to say and not say. She recommends being kind to yourself, cutting yourself slack when you don’t show up exactly as you wish you had.

Perhaps the advice of Tisdale’s that was the hardest for me was to let the dying person talk about death and dying. My husband wanted to talk about it, but I was afraid that if I acknowledged he was dying, he would slip away faster. If I could change one thing about how I showed up for his death, it would be to not change the subject or dismiss his worries when he wanted to talk about dying. All I had to do was listen.

And now, as Tisdale advises, I need to cut myself a little slack.

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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.
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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.
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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:

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

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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.
grieving

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.