Tag Archives: caregiving

caregiving, grieving

Another Caregiving Stint Brings on Grief Again

After a loss, each new experience hits differently. It hits in the context of the loss. Nothing I experience will ever again be uncolored by the stroke and death of my husband.

My daughter recently had surgery to fix an abnormality in her hip. The surgery involved her being put under general anesthesia. After the surgery, the surgeon came out to say everything went well, but I still had a tight feeling in my chest. My husband’s surgeon had told me what a great success his surgery was—but he never regained consciousness and died two days later. I couldn’t draw in a deep breath until I saw my daughter a few hours later and she was conscious and talking.

Before my husband died, I knew there were risks to any surgery. I knew people occasionally didn’t wake up afterwards. I signed all the consent forms when my husband went in, knowing something could go wrong. But it wasn’t until he didn’t wake up that I really understood. I’m not implying that anyone tricked me or that I made a mistake. I would still sign the forms today. But now that I’ve experienced my husband not waking up after surgery, I will never again blithely assume that a surgeon’s report that things went well means anything.

After her surgery, my daughter stayed with me for a couple weeks and I got to take care of her. She didn’t need the level of care my husband did, but she did need help getting in and out of bed, showering, and getting dressed. Each of these activities filled me with memories of caring for my husband.

Sometimes when I remember taking care of my husband before he died, I think I must be idealizing the situation. Surely I couldn’t have loved it as much as I think I did. Who would love being woken up in the middle of the night to help someone use the bathroom? Who would love doing countless loads of laundry because of uncontained body fluids? Who would love having their own activities interrupted constantly by someone else’s needs? But taking care of my daughter made me realize yes, I really do love caregiving.

I consider caregiving an honor. When somebody allows me to see them in such a vulnerable state, I am humbled. My husband prized his independence, as does my daughter. For them to not just consent to me caring for them but to accept it with grace allows me to perform caregiving tasks with grace. Grace begets grace. I try to make it as easy as possible for the care-recipient to accept with grace. I like who I am when I am caregiving—I am patient, accepting, and present in the moment. It’s like Zen meditation for me. I remember feeling that way when my daughter was a baby and needed diaper changes.

Caring for my daughter after her surgery was significantly different from caring for my husband, though, and those differences triggered a lot of sadness in me. My husband had his stroke during the pandemic, so we were much more isolated during my caregiving of him. My daughter had a steady stream of visitors, both in the hospital and once she was at my house, and it was also possible for her dad and friends to help with some of the caregiving. For example, several times when she stayed up later than me to chat with visitors, the visitors were able to help her get ready for bed so that I could keep sleeping. That simply wasn’t possible with my husband.

I also knew my daughter would be able to move back to her apartment after a few weeks, so I could enjoy the caregiving, knowing it had an endpoint that would signify progress in her recovery. That wasn’t the case with my husband. His stroke was massive, destroying 2/3 of the right hemisphere of his brain. He was always going to need significant care and sometimes the specter of caregiving forever weighed on me.

Several times while taking care of my daughter, I was overcome by waves of sadness that I wasn’t always able to give my husband the same level of patience and good cheer I gave my daughter. My therapist reminds me that I did the best I could at the time for my husband. I know I did. I also wish I could have done more, been more, known more. The pandemic complicated everything, as did financial pressures, the extreme complexity of my husband’s case, the nightmare of navigating health insurance, and his depression and anxiety.

Within those constraints, I did well. This fresh grief over not being the perfect caregiver isn’t really about my caregiving. It’s about not having more moments to show him my love.

caregiving, life skills

Caregiving as Couples Therapy

I was my late husband’s caregiver for 53 ½ weeks after he had a massive stroke. He was paralyzed on the left side and had a condition called left neglect in which his brain didn’t process anything that happened to the left of his midline. The left neglect impacted his vision, hearing, and attention, so he often didn’t process sounds that originated to his left, even though his hearing was fine. If a person he was talking to moved to his left, it seemed to him that the person had simply disappeared.

I had to help him with everything from dressing and walking to toileting. I had to manage his medications, remind of things his injured brain couldn’t retain, and do all the cooking, cleaning, and laundry. (I admit I let much of the cleaning slide.) It was a lot of work, but I miss those days tremendously.  

Caregiving gave us the opportunity to get to know each other in new ways. His stroke and my becoming his caregiver were unexpected and not something we would have wished for, but we both agreed that our relationship changed for the better because of it.

We got a glimpse of this the year before his stroke, when my vision worsened to the point where I could no longer drive. I took the bus to work, but my husband began driving me to the grocery store for my weekly trip there. The plan was for him to wait in his van while I shopped, but when we got there the first time, he said, “I better come with you to make sure you’re doing it right.”

We ended up having fun—he asked questions about why I bought the brands I bought (I usually have strong opinions about food), he tried to sneak all sorts of things I would never buy into the cart (the very worst flavors of Pringles, for example), and he made it look like there were stairs to a secret basement in the produce section. His antics that day got him tailed around the store by the security guard.

We laughed so much that we did all the grocery shopping together after that, but typically without catching the security guard’s attention. Neither of us wanted me to lose the ability to drive, but the shift in our relationship meant a little more time together. A tedious chore became a time to enjoy each other’s company.

That realization helped us understand that when I became his caregiver, we would need to continue enjoying each other’s company. A caregiver and care-recipient have to spend a lot of time together and if it’s not pleasant time, caregiving becomes a chore and care-receiving becomes an indignity. Both caregiver and care-recipient have to work at the relationship to make it a partnership.

One thing we did that made caregiving feel like a partnership was talk to each other while I was helping him with something. We simply said to each other what we were doing. If I was helping him transfer from the bed to his wheelchair, he might say, “I’m going to count to three and then you’re going to sling my ass from the bed to the wheelchair.” I would repeat that back to him, adding, “First I’m going to confirm that the brakes are on.” We would wink at each other after we had a plan. It helped us stay on the same page, but it also gave us a chance to be silly and loving.

Another thing we did was to constantly express our admiration and appreciation for each other. We both recognized that the other one was working hard, even when things didn’t go as planned. When he fell while walking across the dining room and it took us an hour to get him up again, I told him how much I appreciated the effort he was putting into walking with his hemi-walker and he expressed his appreciation for my patience. We both reassured each other that we would eventually get him up.

Because I needed to be available to him at all times, we got really good at telling each other what we needed. When I got frustrated, I couldn’t just walk away and leave him alone because he needed me for so much. When he got frustrated, he couldn’t leave without me helping him. We learned to say to each other, “I need to take a few minutes to collect my thoughts” or “I need a few minutes to myself.”

Of course we both had moments of crankiness, being short-tempered, and the like, but we also became quick to apologize. We were both angry at the stroke, not at each other.

I wish I could have learned these lessons in communication, patience, appreciation, and compassion sooner and in some other way, but I am grateful that my husband and I got to do that growing together.

Accessibility + Dis/ability, caregiving

Disability is not a catastrophe

One of the ways I see ableism sneak into our lives is by the way we assume that disability is a tragedy and that the lives of disabled people are grim and hopeless. My late husband was disabled by his stroke and we had many challenges learning how to navigate life post-stroke. At the same time, our lives post-stroke were wonderful. 

 I recently told a new acquaintance about my late husband having a stroke and her reaction was so refreshing: she said, “That must have been intense” rather than “that must have been awful,” which is how most people react. Her response reminded me of Sallie Tisdale’s suggestion in Advice for Future Corpses (and Those Who Love Them) to think of something as difficult rather than bad.  

When we label something bad, it is easier to attach shame to it and avoid talking about it. That is not the case when we label it difficult. Humans may not always like things that are difficult but we respect them. My husband and I had many difficult days after his stroke. Some of those difficult days were the best days of my life so far. 

I’ve noticed how differently people react to two of my recent unusual experiences. When I tell people I went to Antarctica, they usually exclaim, “Wow! That’s amazing!” or something like that. They want to know about the experience, they ask to see pictures, and they listen intently to my stories. But when I tell them I was my husband’s caregiver for a year, they usually look horrified and say something like, “Oh, no! That must have been awful!” Very few people ask what it was like or for any detail. If I persist and talk about it, they often look uncomfortable. 

Yet, both experiences were mind-expanding, challenging, tranquil, anxious, and astonishing. The trip to Antarctica was by choice and the caregiving was by necessity, but both experiences were ones I cherish. 

I think people simply assume that the adventure of being my husband’s caregiver was a catastrophe while going to Antarctica was a wonderful adventure. 

Sudden, unexpected disability is certainly challenging. My husband and I had to adjust nearly everything about our lives and we had to do it with no notice. The adjustments were often awkward, sometimes expensive or time-consuming, and often felt very unfamiliar and so seemed off. But as we got used to each adjustment, it came to feel normal to us. 

People who are not used to helping their partner use the toilet assume it is a horrifying experience, but once we learned the logistics of it, it was just part of our usual routine. We had some of our best conversations while I was helping him use the toilet, as well as some of our biggest laughs. 

Considering that most of us who live long enough will become disabled at some point in our lives, it makes more sense to approach disability as a normal part of any life. We don’t have to look forward to it or even like it—there are many parts of life we dislike (paying taxes, for example, or flossing or job interviews), but we accept them as normal and that impacts our attitude toward them. We may feel trepidation and even some dread around job interviews, but we don’t avoid people who are on the job market. We don’t plug our ears and shout “la la la!” when they talk, but when I start talking about being my husband’s caregiver, many people do the equivalent of plugging their ears. 

And then there are those who perk up, relieved, I think, that I am talking about it. I want more of us to perk up or at least not turn away. 

Hearing and vision will fade, mobility will slow, and anxiety and mental illness will impact many of us. If we refuse to acknowledge that, our fear will be magnified and the avoidance and secrecy around disability will make it that much harder to talk about it. 

Accessibility + Dis/ability, caregiving, grieving

What Being a Caregiver Taught Me About Gracefully Receiving Help

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.

grieving

Moving Forward: Adjusting to New Rhythms

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.

grieving

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.

grieving

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.

Buddhist life, grieving

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.

grieving

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.
grieving

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.