Tag Archives: caregiving

Aging, caregiving, death, failure

Honoring Dignity until the End

I learned after my husband had his stroke how important it is as a caregiver to respect the dignity of the person you are caring for. My husband was still the amazing person I fell in love with—strong-willed, take charge, and unwilling to suffer fools. The challenges he faced after his stroke were often at odds with the traits I admired about him and that led to struggle for both of us. I had to learn ways to honor the man who was used to being in charge while we both adjusted to him not being able to be in charge the way he used to be.

I messed up all the time. One thing I never did stop doing that drove him nuts was using the word “remember.” His memory took a serious hit with the stroke and he hated that he couldn’t remember many things. Even though I knew that, I defaulted often to saying things like, “Remember, your OT said to always start putting your shirt on with the weak arm first.” I could have said the sentence without “remember” at the beginning and it wouldn’t have bothered him, but I forgot that more often than not and it irked him. Sometimes he would snap, “No, I don’t remember! I had a stroke!” out of frustration.

These moments taught me something profound about dignity: it’s not about being perfect in our care, but about acknowledging the humanity in our imperfection. My husband’s frustration wasn’t just about my use of the word “remember”—it was about his right to feel frustrated, to express it, to still be the person who could tell me when I was driving him crazy. That was dignity, too.

We were both learning how to navigate our situation, all the way up until the moment he died. Sometimes we both managed it well, but sometimes one of us managed it better than the other and had to show grace for both of us. Sometimes that was me and sometimes it was him.

My point is that my husband’s dignity remained intact until he died. Dying people are living people.

Now in my hospice work, I see similar dynamics play out. Well-meaning family members or healthcare workers slip into patterns that diminish the dying person’s dignity, often without realizing it. They’ll discuss test results over the person’s bed as if they’re not there, or use that sing-song voice normally reserved for small children and pets. I recognize it because I’ve been there, uncertain about how to act around someone whose capabilities have changed.

But what I learned from my husband serves me well now. When I interact with a hospice patient, I carry with me the understanding that this person, no matter how unresponsive they might appear, is still living their life. They’re still accumulating experiences, still processing emotions, still being themselves. Just as my husband was still himself, even when the stroke changed how he could express it.

I’ve developed what I think of as a dignity practice. I announce myself when I enter and leave a room, speaking directly to the person: “Hi Sandra, it’s Elizabeth, the hospice volunteer.” I ask permission before touching anyone or their belongings. I maintain privacy during personal care, narrating what I’m doing like I would want someone to do for me. These aren’t just polite gestures—they are acknowledgments of personhood.

Sometimes family members look at me strangely when I talk to someone who hasn’t responded in hours or days. One patient’s daughter told me, “I don’t think she can hear you,” and I said, “Sharon, I think maybe you can hear me,” and continued talking to her. Even on his hardest days, my husband was still there, still himself, still deserving of being treated like the capable, complicated person he’d always been.

Dying doesn’t erase personhood—dying distills it to its essence. Just as my husband’s stroke didn’t make him any less the man I married, terminal illness doesn’t make someone less themselves. Our job is to honor who they are until the very end.

death

What Dying People Teach Me about Slowing Down

Time moves slowly for Margaret as she waits to die. She’s been expecting death to come for months, having outlived her medical team’s predictions by 8 months now. Her adult children try to get her to move faster as she goes about her day. If she hasn’t touched her snack in a few minutes, one of them will say, “Mom, take a bite of fruit.” A few minutes later, one will ask her if she’s finished with her snack. Her answer is almost always the same:

“I don’t think so,” said slowly and deliberately. She will not let other people’s rushing determine her pace, which is languid and relaxed.

When I help her sit in her push button recliner, she often calls out halfway through its recline, “Oh, wait, stop.” The reclining action is too fast. She wants it to slow down, but the chair has just one reclining speed, so she takes a break midway through the recline and then lets me know when she’s ready to continue reclining.

I’ve seen this resistance to hurrying in other people near end-of-life. I adore the paradox: those with the least time often understand best how to use it. Margaret, Shawn, and others are deeply present in the moment. They speak with measured words and seem to feel no urgency. Every simple act becomes a meditation – there is no rush when every moment holds its own completeness. A sip of water is something to savor. When I hold Margaret’s hand, she smiles contentedly and squeezes my hand, taking time to really connect before letting go.

This radical slowing down stands in sharp contrast to the pressure in the larger culture to be “productive,” to multitask, to do things quickly, efficiently, and do more and more of them. The urgency I feel to respond to texts or check the news headlines evaporates when I am with someone who measures time by something other than tasks completed.

After my husband’s stroke, it could take an hour to get him dressed. Rushing only slowed things down—an arm would end up in the wrong sleeve, a nearby lamp would get knocked over, or worst, we would argue—so I learned to let getting dressed unfold at its own pace. Instead of thinking, “I need to get out his clothes, make sure he’s ok with them, get his pajamas off, get his shirt on, get his pants on . . .” I focused on the first thing that needed to be done and tried not to think about the second thing until the first thing was completed.  

Getting his clothes out might take one minute or it might take 20, depending on his mood, the weather, how caught up I was on laundry (it seemed he always wanted to wear the clothes that were in the dryer at the moment rather than the ones that I had already folded and put away). On the days when I was distracted while we picked out his clothes by all the other things that needed to be done, I didn’t listen as well when he mentioned that he wanted to be bundled up in flannel, and then I’d be impatient when he resisted putting on the non-flannel shirt.

In the moments when I rushed Tom, I felt justified. It was usually because we had an appointment with a doctor or physical therapist and being late would mean forfeiting the slot. But rushing him meant forfeiting the warmth of being on the same team. I understand why I rushed him and at the same time, I wish I hadn’t.

We can only ever exist and act in the present moment. Our minds can speed ahead into the future, but we cannot. Being present means keeping your mind anchored in the here and now. When I let picking out Tom’s outfit take as long as it needed to take before moving onto the next step of getting him dressed, I was calm and present. When I let reclining Margaret’s chair take as long as it needs to take, I am calm and present.

I need to learn over and over that time doesn’t need to be managed or conquered. It needs to be inhabited, fully and without hurry, one moment at a time.

caregiving, death

Love, Food, and Loss at the End of Life

Margaret is dying. She’s almost 90 and has chronic obstructive pulmonary disease (COPD), a condition of the lungs that limits airflow and causes shortness of breath. She’s been on hospice care at home for many months and is ready to die.

Usually when I visit her, she has very little appetite. Her children want her to eat and offer her meals, snacks, and beverages every few minutes while I am there. “Mom, how about some toast?” one asks. Margaret shakes her head slowly. “I’m not hungry,” she says softly.

“Just a bite of toast, Mom? Please?” the daughter urges, putting a plate of toast in front of her.

Margaret takes a bite of toast, looking down at the plate. She gestures slightly with the toast and asks me, “Is this the toast?”  She no longer remembers the names of many things.

“Yes,” I confirm. I deliberately do not encourage her to eat more of the toast.

Later I mention to the children that appetite loss is normal for people approaching death. I’ve told them this before, but I know that watching your mother die is difficult and I don’t know what they remember of our previous conversations. I tell them again as if it’s the first time.

I know firsthand how hard it is to watch a person you love refuse food, especially when shared meals have been important to family life for years. Margaret’s kitchen is stocked with beautiful blue Le Creuset cookware, indicating that food preparation has been taken seriously.

One of the ways I demonstrated my love for my husband Tom was by cooking for him. When we met, I was learning how to cook meat after being a vegetarian for 25 years. As a hard-core carnivore, he was happy to give me assignments: learn ten ways to make chicken, talk to the guy who owns the local meat shop about the best cut of beef for slow cooking, and of course, come up with 7 different recipes involving bacon to celebrate Bacon Week (which doesn’t technically exist, but did in his house, and ran from Christmas to New Year’s).

After his stroke, I knew his recovery was going well when he started asking for very specific foods and dishes: tangerines with crème fraiche, a combination of red and green grapes, chicken pot pie with fresh thyme. He had a sweet tooth after the stroke and loved root beer floats and chocolate eclairs—so I kept root beer and ice cream on hand. I discovered the Whole Foods bakery made chocolate eclairs on Tuesdays and Fridays and I got them delivered. He took joy in eating, thanking me for whatever I gave him and often bragging to his medical team about how well I fed him.

About a month before he died, his appetite began to wane. He no longer got excited about his morning coffee and sometimes wanted to go to bed without dinner. I made his favorite dishes—macaroni and cheese, fried chicken, chilaquiles. I made a side of bacon to go with whatever I cooked. Sometimes he didn’t care. He took a few bites of a chocolate éclair and lost interest. Even juicy fresh fruit lacked appeal for him.

I was crushed. For twelve years, he had loved my cooking and I had loved cooking for him. Cooking for him was one of the ways I made him feel special—not just serving his favorite foods, but setting the table nicely, using cloth napkins every night, sometimes lighting candles. I showed my love for him in a hundred little ways, but cooking for him was one of my favorites.

I now realize that there were signs he was dying well before he died. Like Margaret, he lost his appetite and all interest in food. He wanted to nap even more than usual. At the time, I thought he was just anxious about his upcoming surgery, but now I think he was turning away from this life and preparing for his next adventure.

Just like Margaret’s children, I kept offering food. I thought if I just came up with the right food to offer, he would eat. When he turned down a root beer float, I offered cherry pie. When he showed no interest in fried chicken, I suggested nachos. But none of it interested him.

I wish I had respected his wish to not eat and asked him instead, “What do you want?” If I had let go of my focus on food, he might have asked me to hold his hand or shared a memory with me.  

This is the question I bring to Margaret: “What do you want?”

She doesn’t want much—mostly to nap. But sometimes she wants to talk about what death will be like or whether she’ll be reunited with her dead siblings. Often she wants to sit together in silence.

At the end of life, those activities may hold more meaning than eating.

Aging, caregiving

Use Silence for More Authentic + Vulnerable Conversations

I visited a hospice patient last week who is slowly detaching from this life. I know from my end-of-life doula training that this is normal. As they get closer to death, people often turn inward, eating less, talking less, seeming less engaged with the world outside themselves. I see this happening with Margaret.

When I arrived at her apartment, she was sitting at the table, staring down a plate of scrambled eggs. Her head hung. There was a fork in one hand, but that hand rested on the table and the fork dangled a bit precariously.

“Mom doesn’t want to eat,” Margaret’s daughter told me. I have assured the daughter on previous visits that it’s normal for people to lose their appetites and that if Margaret doesn’t want to eat, it’s ok. But the daughter would really like her mother to eat.

I asked Margaret if she was hungry.

“No,” she said quietly, not making eye contact. “I’m having . . . a bad day,” she said slowly, still not making eye contact.

“Do you want to talk about it?” I asked.

“No,” she said. Despite having said she wasn’t hungry, she started tentatively eating the eggs. While she ate, we sat in silence. Each bite seemed to take her full concentration and I didn’t want to break it. When she finished eating, I helped her to her recliner, where she dozed. My entire visit passed in near silence. It was peaceful and when I left, Margaret’s daughter commented that her mother was less agitated than she had been earlier.

I’ve always loved silence, but for most of my life, I tried to avoid it unless I was alone. Unless the person next to me was a stranger or we were watching a movie, I felt compelled to fill the silence with conversation. Unless I was alone, silence felt awkward to me. I think many of us are socialized this way.

At work, I’ve championed silence. In the writing center I direct, I teach tutors to allow silence in their sessions to give their clients time and space to reflect. I set a timer for ten seconds and we sit silently for the full ten seconds. It’s hard. We are not used to ten full seconds of silence.  

When I teach, I allow at least ten full seconds of silence to pass after I ask a question. My students sometimes comment on how uncomfortable the silences in my classes are. But more often, students thank me for providing the silences, saying those moments are productive for them.

Since my husband’s stroke, I’ve been allowing more silence into my conversations. My husband needed the processing time, and I’m finding that it’s not just folks who’ve had strokes who benefit from that time.

Being with someone in silence is a great way to hold space. Filling the silence with insignificant chatter does not invite authenticity or vulnerability.

If you’re not used to being silent with someone else, it may take practice before it feels configurable to you. That’s ok. I’ve been practicing for years and still succumb to the pressure to fill the silence sometimes.

If you want to get more comfortable with silence, here are some strategies to try:

  1. Practice counting seconds in your head after someone speaks and before you speak. Notice how many seconds (if any) typically pass in silence between you and the other person. Aim to extend it by one second. It may take many days or weeks of practicing this before you’re ready to extend it by another second, but that will eventually happen. Then add another second. You will notice your conversations stretching out, like a cat settling into a sunny spot. You will feel calmer. You will be listening better, thinking less about what you’ll say next.
  2. When the silence begins, take a deep breath. Use the breath to buy yourself a few seconds, but also to ground yourself in the present moment. I do this when I’m teaching. After I ask a question of the class, I take a deep breath and let it out slowly. Then I start counting in my head to ten. I don’t allow myself to speak until I’ve gotten to ten.
  3. Remember that silence is communication. It communicates patience, leisureliness, respect, attentiveness. It can de-escalate tension. In fact, silence has been key in helping me cope with tension and conflict without getting defensive. Recently, when I’ve been in situations that could escalate into an argument, I’ve taken a deep breath and made myself count to ten before responding. Interestingly, my responses in these situations tend to take the form of questions rather than defensive statements. I ask for more information instead of telling the other person they are wrong.

Others may not like the silence and that’s ok. They may not be used to it. They may be like the students in my classes who complain that the silence is awkward. Perhaps it is. But for me, allowing space for authenticity and vulnerability is more important than avoiding awkwardness.

Accessibility + Dis/ability, caregiving

How to Support Someone Looking for a Diagnosis

Last week I wrote about why getting a diagnosis can be so difficult: it can be expensive in terms of both money and time, and patients and doctors don’t speak the same language. On top of that, there’s a social cost: someone who is trying to get a diagnosis is often dismissed by friends and coworkers as a hypochondriac or faker.

If someone you know is trying to get a diagnosis and they’ve had to go to more than one appointment or have more than the usual blood and urine tests, they are likely frustrated. They may be stressed out about how much money, time, and energy they are putting into the process. They may also feel lonely. Looking for a diagnosis can alienate someone from people they used to be close to.

When I was having what turned out to be brain bleeds before my arterio-venous malformation (AVM) was diagnosed, I was lucky to be surrounded by people who supported me. My boss and co-workers didn’t question whether I was really experiencing the brutal headaches I described, even though they didn’t see me when I was having a headache. My then-husband encouraged me to keep seeing doctors, even when we didn’t have insurance and it felt like we couldn’t afford it.

No one was questioning me besides the doctors I was seeing, but I still often felt alone. I had seen and heard lots of questioning of other people about their symptoms. For example, my grandmother had many medical issues and her husband and son regularly questioned “how real” her symptoms were since doctors weren’t diagnosing anything. They groaned audibly whenever she mentioned a stomachache or headache. When guests came over, her husband would say, “Please don’t ask her how she feels!” with a roll of his eyes.

Growing up with this allowed me to internalize the message that doctors know our bodies better than we do. Whenever one of the headaches or smell reactions came about, I had an argument in my head: one voice asking me, “Are you sure this is happening?” and another one saying, “Yes!” But no matter how emphatic the “Yes!” was in my head, there was always that second voice, gaslighting me, making me wonder, was I just weak? Did everyone have headaches like this but I was the only one complaining because I was pathetic?

Chances are, your friend looking for a diagnosis feels some shame about their search. You can help alleviate some of their feelings of being alone. Try this:  

  1. Believe them. Even if you have had very different experiences with pain, memory, mobility, organ function, or whatever, understand that your experiences are not universal. It’s fine to ask questions for better understanding, such as, “Have you noticed any triggers for the issue?,” but don’t question whether your friend’s experience is real. It’s very likely that your friend’s concerns are being minimized or even dismissed by healthcare providers. Your job as a friend is to validate their experience and support them in the difficult process of getting a diagnosis.
  2. If you’re able to, offer to accompany them to appointments. Having someone else there to listen and simply silently support can be helpful. When I was trying to get my vision issues diagnosed, my husband came with me to an appointment; being able to talk with him afterwards about what the doctor said helped me clarify my next steps. If you live far away, your friend might be able to have you “Zoom” into the appointment.
  3. If you’re not able to accompany them to appointments, you might offer to run errands for them, pick the kids up from soccer practice, or do something else to offset all the time and energy they are putting into healthcare appointments.
  4. Ask what would be helpful. If you’re not sure what they need, you can ask. “How can I help?” is a great question and much better than “Let me know if I can do anything,” which is very close to useless. You can also ask questions like, “Do you want to be distracted or do you want to talk about this?” Don’t assume you know what’s best.
  5. Aim to support, not solve their problem. Hold space without suggesting what you would do (unless they ask you).
caregiving, grieving

Accepting “I Did the Best I Could” is an ongoing process

Accepting that I did the best I could when my husband had his stroke is an ongoing process. I often find myself thinking, “yes, I did the best I could,” followed by “my best wasn’t very good,” and then I dwell on that second thought.

Of course I would be a better caregiver today than I was when Tom needed me. I know so much more now about holding space than I did then. I am better rested now without the exhaustion of around-the-clock caregiving. Without the constant worries about Tom’s pain, his mental health, and his prognosis, I can now reflect and make decisions at a more leisurely pace.

And oh, yeah, my caregiving all took place during a pandemic, which made it difficult or impossible for many friends and loved ones to help out.

Still, while I generally feel pretty good about how I showed up for Tom, there are times when I am reminded that acceptance isn’t a one-and-done thing but rather something I need to do over and over and over again.

I have spent the last week accepting again that I did the best I could.

Last week I read Summoned by a Stroke: An Homage to Love, Relationship, and Living Life Fully, Judy Friesem’s memoir of life with her husband Kim after he had a stroke. There are many similarities between Kim and my husband Tom. Like Tom, Kim had a massive stroke on the right side of his brain, leaving him paralyzed on the left. Like Tom, Kim exhibited incredible grace and acceptance of his new reality.

But I saw many differences between Judy and me. Judy seemed to have much more insight than I did into what Kim was thinking, feeling, and needing. Where Judy is generous, I was narrow-minded. Where Judy seemed to intuitively know what Kim needed, I had to figure out Tom’s needs by trial and error. Even when Kim couldn’t speak or write, Judy was able to communicate with him, while I sometimes overlooked basic niceties or argued with Tom or thought I knew better than he did what he wanted.

I know, I know—Friesem’s book is an edited version of what happened. I know she had imperfect moments. I know she struggled. I know this, and yet, I found myself thinking as I read, “I wish I had been half the caregiver she was.”

I did the best I could at the time . . . and I hate that I couldn’t do better at the time.

In this current round of accepting that I did the best I could, I am finding that talking to myself in the second person is more effective than reminding myself I did the best I could. I talk to myself, saying. “You did the best you could,” or “Give yourself some grace—you were operating under terrible circumstances” or “Tom loved you and appreciated everything you did.”

I think using the second person puts a little space between who I am now and who I was then and makes it more possible for me to feel compassion for that past version of me.

That space also allows me to see the distance I’ve come since then. My listening skills, in particular, are so much better now, and while I wish Tom could have benefitted from them, I know he’d be proud of having taught me to listen.

“Another lesson from Tom DeBlaker,” he would say with a wry smile, and I would hug him and bury my head into his shoulder.

Accessibility + Dis/ability, caregiving

How to Talk with Disabled People

Before his stroke, my husband was the kind of man to walk into a room and instantly own it. People deferred to him because of his confident swagger, his understated confidence, and his uncanny ability to cut through bullshit without shaming the bullshitter.

After his stroke, when he used a wheelchair, spoke slowly, and experienced confusion, disorientation, and memory lapses, it broke my heart to see how differently the world treated him. His friends and loved ones didn’t treat him any differently, but the doctors and medical professionals we saw on a regular basis often spoke to me rather than him. Many receptionists would look right past Tom and ask me, “Who are you checking in?”

I tried to redirect the conversation. For example, if a doctor asked me how a prescription change was working for Tom, I would say, “Tom, what do you think of the new prescription?” Sometimes the doctor would take the hint and start talking to Tom but often I had to continue redirecting questions to Tom throughout the appointment. It was a constant battle to get many of the medical professionals to address him directly.

He did have a few wonderful health care providers who were very respectful. His neurologist, in particular, always spoke directly to Tom, listened carefully without rushing him, and asked clarifying questions to make sure he understood what Tom was telling him. His physical, speech, and occupational therapists all addressed him and made an effort to get to know him.

Other health care practitioners were sometimes shockingly disrespectful. I remember one who pulled Tom’s pants down to give him a shot in his knee without ever speaking directly to Tom or telling him what he was about to do. I was so taken aback I couldn’t collect myself quickly enough to say anything, and I apologized profusely to Tom for my failure to say anything. It was a constant struggle.

This struggle is why I was so excited to come across a video produced by the Special Olympics called “How to Speak with People with Disabilities.” The video focuses on people with intellectual disabilities but the basic advice it puts forth applies to people with any type of disability.

The video features several people with intellectual disabilities talking about how they want their health care practitioners to interact with them. They mention that they want their health care practitioners to get to know them, to make eye contact with them, and to talk to them rather than their caregiver. These are basic practices I would hope any medical professional would use with any patient, with or without disabilities, but I know from my own experiences and those of my husband that it doesn’t happen often enough.

The video emphasizes talking with people with disabilities rather than talking to them. That preposition is crucial: talking to people positions the health care practitioner as an expert imparting information to a patient, while talking with people positions the health care practitioner and the patient as partners and equals.

Any time you talk with a disabled person, give them the same respect you would give anyone else. Treat them with dignity. Speak to them, not their caregiver. Get to know them. This goes for faculty talking with disabled students, health care practitioners talking with disabled patients and clients, and anyone else communicating with a disabled person.

grieving

Grief + the Weight of False Memories

I’ve worked hard to adopt the attitude that I did the best I could when I was taking care of my husband after his stroke. Afterall, we were all dealing with a pandemic, I had never been a caregiver for someone with the high level of needs my husband had before, and the person I would typically turn to for support—my husband!—wasn’t available to support me. I was exhausted most of the time and making things up as I went along, learning skills like how to assist with a wheelchair transfer on the fly. Given all that, I did a pretty good job most of the time.

I still find myself wishing I had done things differently, but I’ll follow up that thought with a quick reminder to myself, “But I did the best I could.” Sometimes even after that reminder to myself, I would feel the heat of shame on my face. I would wonder had I really done the best I could? Would someone else have done a better job? Did I make my husband’s last year worse than it needed to be? Or—the big dark question—was his death actually my fault?

Those last two questions are the ones I struggled with the most. “Did I make my husband’s last year worse than it needed to be?” because I had failed to help him reconnect with someone he had lost touch with during the pandemic and “Was his death actually my fault?” because the surgery he never woke up from was necessitated by an infection that I had not noticed until it had progressed to a life-threatening level.

I did a lot of work in therapy on accepting that I had done the best I could at the time. I was imperfect, as we all are. Many things fell through the cracks during that time. I was working remotely, which allowed me to be home and take care of Tom, but balancing my job with his care was tricky and I was imperfect at both. That doesn’t mean his death was my fault or that his last year would have been measurably better if I hadn’t forgotten to get in touch with his friend.  

A couple months ago I did a search of my text messages looking for something related to one of my dogs. The search results showed a conversation from a few months before my husband died with the friend he wanted me to reconnect him with. We’d had a text conversation spanning a few days. How had I forgotten that I had done what he asked? I had been holding myself responsible for making his post-stroke isolation worse than it had to be—but I hadn’t done that.

Ah, but what about me possibly causing his death by not noticing the infection?

Around the end of the year, as I was reviewing my notes for a chapter of my memoir, I was reminded that there were at minimum three healthcare professionals seeing my husband every week. Each one took his temperature and asked him questions about his health. He mentioned being worried about the infection to them. None of them were concerned.

I had been holding myself responsible for something health care professionals didn’t notice. That realization made it possible for me to release the feelings of guilt. I’m just sad about it all now. Sad that he was worried about an infection that went undetected, sad that he had the bad luck to get an infection, sad that he died. But I know it wasn’t my fault.

Our memory is unreliable at best and when you add grief and stir, memory gets even worse. I’m grateful for my journal and notes, but even those rely on memory to some degree. When I journal each morning about the previous day, who knows what inaccuracies and misinterpretations I’m introducing. I’ve taken to understanding my memories as interpretations.

The stories we tell ourselves are powerful. I told myself the story that I should have recognized my husband’s infection for years. Although I’ve released myself of the guilt, my mind does sometimes try to seize on the idea again that it was my fault. I have to remind myself in those moments, “No, that’s not true, multiple medical professionals didn’t notice it, either.” The story is still real to me sometimes, despite what I know to be true. The story feels true.

And I still don’t quite believe that I got in touch with the old friend. I reread the texts from time to time to reassure myself that I did reconnect my husband with his friend.

I trust that at some point, the facts will outweigh my false memories.

grieving

Grieving during the Holidays: Going Down the Christmas Rabbit Hole

I deliberately turned down offers of company for Christmas Eve and Christmas this year, looking forward to having the days of peaceful solitude to myself to relax, bake, and snuggle with the dogs. As a BuJew (Buddhist Jew), my interest in Christmas is all about the cookies, cheer, and delicious smell of pine needles. The day itself holds no special meaning to me.

Or so I thought. As I was trying to go to sleep the night before Christmas Eve, I found myself thinking of all the adventures my husband and I had around Christmas. Since the holiday wasn’t special to either of us, we often traveled on or around it, without the worries of so many holiday travelers.

Many years we drove or flew to Oregon to visit his brother and sister-in-law. My husband, his brother, and sister-in-law were an epic threesome, with over 30 years of rich history and goofy antics. Together, the three were a card- and music-playing, motorcycle-riding pack. Having no skills with cards, music, or motorcycles, I became their sidekick. I was happy to be their videographer, heckler, or appreciate audience (and often it was hard to tell which role I was fulfilling).

When the weather allowed, they put down the cards and played bocce, and then I was their caddy. When they brought their musical talents together, with Tom on harmonica, his brother on guitar, and his sister-in-law singing, I was their groupie and once, muse, as Tom wrote a song about my rice pudding.

Two years we went to Las Vegas and spent Christmas eating in the Jewish tradition, eating Asian food. Another time we did a road trip to Death Valley and camped. Several years we stayed in Denver, spending time with local family.

I spent most of Christmas Eve going down a rabbit hole, correlating emails, photos, and calendars to figure out what we did for each of the 12 Christmases we had together. This exercise is kind of like creating the evidence board a crime investigator makes. I scribbled down notes and clues gleaned from photos and tried to connect them with other details and clues from calendars and emails to figure out exactly what we did each Christmas and what the highlights of it were.  

Once I nailed down what we did each Christmas, I did what I now call “the death math”: I calculated how many years away from dying he was for each Christmas and then reviewed how we spent each one with the frame of “we didn’t know he’d be dead in X years.” The rice pudding song takes on more poignancy when I think, “Two and half years before he died, Tom wrote a song about how much he loved my rice pudding.” Looking at each Christmas in relation to his death makes each one a step in us parting ways.

My reconstruction makes visible a beautiful and heartbreaking arc, with earlier Christmases involving more debauchery and later Christmases becoming a little more quiet and reflective. Our last Christmas, after his stroke, had us talking most of the day about love and forgiveness. Because of the pandemic, it was just the two of us and the dogs. We did a Zoom call with his family and with my daughter, who usually spends Christmas with her grandparents in another state. We read, I cooked us a delicious meal and we ate. Tom had a glass of wine, reserved now only for special occasions because of his vast medication regimen. We had both been working hard on forgiveness together, listening to audiobooks and podcasts on the subject and doing forgiveness meditations and exercises together. It was an emotional, intense, and loving Christmas. Without it, he would have died with some important things left unsaid between us.

I suspect the gnawing feeling of loneliness for him is with me to stay. I miss his quiet company, his love for the outdoors and for every damn dog that ever was born, his irreverent humor, his conviction that Christmas lights ought to be put up no matter what (after his stroke, his son dutifully came over to hang our lights), and about six million other things.

When someone dies, Jews say “may their memory be a blessing.” Every one of my memories with Tom is a blessing and I have so many blessings. The pain comes from wanting more, being attached to the idea that I didn’t get enough time with him. I remind myself that I got exactly as much time with him as I got. “Enough” is a tricky word. What is enough time with a person you love?

caregiving, grieving

How to Be with a Dying Person

Because we don’t tend to talk about death and dying in our culture, most people are afraid to be with a dying person, unsure of what to do or what to talk about.

I was with my husband when he died. During the two days between him not waking up after surgery and discontinuing life support, I was with him for 12 hours a day. COVID restrictions at the time limited guests to two at a time and no one was allowed to spend the night. Sitting with a dying person for 12 hours may sound grueling, but I found that I became so absorbed in the present that the time flowed.

More recently, a loved one made the decision to begin receiving hospice care, which means they are no longer receiving medical intervention for infections and conditions and only taking medicine for pain. Typically when a person begins receiving hospice care, it means they are ready to die, but it may take months or longer for that to happen. In the case of my loved one, they are progressing quickly toward death.

I have spent the last few evenings with my loved one and their partner.

My thoughts on how to be with a dying person are shaped by these two experiences and also my own near-death experience after I had a stroke in 1997.

Here’s my advice:

If they are able to talk, they may be hard to understand. Be patient. There is no urgency. Give them time to stumble over their words. Follow their lead about what to talk about. They may want to talk about dying or the weather or their mother or something else. Whatever they want to talk about is ok. You don’t have to try to steer them toward or away from certain topics.

If they are responsive but not able to talk, you can hold their hand. You can talk to them about memories, you can read to them, or you can be quiet. Sometimes sitting in silence with someone is more comforting and profound than filling the space with words.

It’s ok to bring a book or play a game on your phone. You might scroll through pictures on your phone and show them to your loved one, if their eyes are open, or describe the photos to them if their eyes are closed. When my husband was dying, I chanted his favorite Buddhist chant.

If they are not responsive, talk to them. The point isn’t to wake them up but to help them understand what is happening around them. I don’t know what a person who is dying and appears to be sleeping understands, but I choose to believe that they can hear us talking and feel us holding their hand or touching them gently.

When I enter the room of a dying person, I announce my arrival to the person and give a description of what I’m doing. I might say, “Hi, Loved One. It’s Liz. I’m here to say hello and tell you I love you. I’m going to sit down on your right and hold your hand.” I also announce when I’m leaving.

When I visited my loved one today, I noticed several vases of beautiful flowers in the room that others had brought. I described them in detail to my loved one so they could picture them if they wanted to. I told my loved one how good it was to see them looking peaceful.

When I was in a drug-induced coma after my stroke, I did hear people’s voices. I don’t know if I captured everything that was said around me, but I was certainly aware of who was in the room with me and the broad strokes of the conversation.

It’s ok to cry. It’s ok to not cry.

You don’t need to entertain them, but it’s ok to laugh. Death may feel like serious business, but I think my husband enjoyed hearing his loved ones laughing around him as he died.

If the person is at home, it can be nice to bring some food for their family, if they live with others. At my loved one’s home, people have brought cheese and crackers, brownies, fruit, salad, and other easy-to-eat food, along with many bottles of wine.

Take care of yourself: take breaks, stay hydrated. I have had to set alarms to remind myself to go for a walk, have a drink, and eat a snack every few hours.  

It can be exhausting emotionally, which may leave you feeling tired, irritable, or disoriented. You may feel calm when with the person and then weepy and anxious later. Or vice versa. I find that I feel completely calm and open while with a dying person and then I’m very anxious and sad after. The anxious sadness can last for days.

It can help to remind yourself that being with a dying person is an honor that not many people get to experience.