Tag Archives: memory

Aging

“Do You Remember?” Is Not a Kind Question for Folks with Dementia

After his stroke, my husband had some dementia. He was only 60 and his memory loss was inconsistent, so I thought he was faking it sometimes to avoid being responsible for certain things, like following his physical therapy routine or remembering that we had already discussed that he wouldn’t be able to drive again. I’m ashamed now that I sometimes snapped at him, convinced he was manipulating me when he claimed not to remember conversations we’d just had. The unpredictable nature of his memory loss made it hard to accept—one moment he could recall intricate details about a work project from years ago, the next he couldn’t remember what we’d discussed five minutes earlier about his medication schedule.

I didn’t understand then how memory loss works, how the brain can hold onto old memories while struggling to form new ones, or how stress and fatigue can affect cognitive function. Looking back, I see how my skepticism must have hurt him, adding shame and frustration to his already overwhelming struggle to make sense of his changed brain. It’s a particular kind of guilt, realizing you doubted someone you loved when they were telling you the truth about their experience.

After experiencing the complexity of memory loss through my husband’s stroke, I now recognize how harmful our instinctive approaches to cognitive difference can be. When visiting someone with dementia, it’s tempting to test their memory. “Do you remember me?” we ask, or “Remember when we went to that wedding?” or “You know who this is in this photo, right?” We might think we’re helping them access memories or staying connected to their past, but what we’re really doing is setting them up for failure and shame.

Think about how it feels when someone asks you “Do you remember…” and you don’t. That sinking feeling in your stomach, the embarrassment of having to admit you’ve forgotten something you “should” remember. Now imagine experiencing that feeling multiple times an hour, every day, as your brain betrays you more and more frequently. Imagine watching people’s faces fall when you can’t remember them or seeing their poorly hidden disappointment when you don’t recall a supposedly significant event.

The truth is, asking someone with dementia if they remember something is rarely about helping them—it’s about making ourselves feel better. We want confirmation that they still know us, still hold onto memories we share, still maintain connections to their past. But in seeking this reassurance, we’re causing distress to people we care about.

This was made crystal clear to me on a recent visit with a hospice patient who has advanced dementia. As I walked into the room, her adult child said, “Look, Mom! It’s Liz! You remember her, don’t you?” Her mom looked the way a classroom full of kids looks when the teacher announces a pop quiz. The mom looked at me and said, “You must think I’m so dumb.” She was clearly ashamed.

There’s a better way. Instead of quizzing people about their memories, we can offer information freely and without expectation. Rather than “Do you remember me?” try “Hi, Aunt Sarah, it’s Elizabeth, your niece. I always loved visiting you and Uncle Jim when I was a kid.” Instead of “Remember when we went to that wedding?” try “I was thinking about Jenny’s wedding the other day—you wore that beautiful blue dress and danced every dance.”

This approach accomplishes several things:

  • It provides context and information without requiring the person to admit what they don’t remember
  • It allows them to engage with the memory if they can access it, but doesn’t put them on the spot if they can’t
  • It maintains their dignity by treating them as a conversation partner rather than a memory test subject
  • It shifts the focus from what they might have forgotten to what you can share together in the present moment

Some helpful phrases to keep in your pocket:

  • “Let me tell you about when we first met…”
  • “I was just thinking about the time when…”
  • “I have such fond memories of…”

The other approach I like is to ask if they want a reminder. I say, “Would you like me to remind you how we know each other?” Sometimes the person with dementia will immediately say yes, but other times this prompt seems to open up space for them to fill in what they do know even if its incomplete. Last week I visited with a hospice patient who responded with, “I know you’re with hospice, but I can’t remember what that means.” That enabled me to help her understand not just who I was but what hospice does.

Someone with dementia may have different memories available to them at different times. They might recognize you immediately one day and not know you the next. They might recall distant events clearly while recent ones slip away. By offering information freely instead of quizzing them about what they remember, you create space for whatever level of memory and connection is possible in that moment.

Most importantly, focus on making each interaction pleasant in the present moment rather than trying to establish connections to the past. Share stories, look at photos together, engage in activities they enjoy. Let them know they are valued and loved right now, regardless of what they can or cannot remember.

Elizabeth Kleinfeld is a disabled widow who blogs about grief, disability, Buddhist life, and joy. Sign up for her free monthly newsletter here. 

grieving

31 Months Out: Grief No Longer Filters Everything

I noticed last week that the corners of my mouth were cracked, the result of the dry cold winters bring to Denver. This has happened to me every winter since I moved here nearly 30 years ago. But this is the first time I’ve noticed it since my husband died, meaning I didn’t notice it for two years. I’m sure it’s happened for the past two years; I just didn’t notice it.

I wouldn’t have given this much thought except that it hurts enough that it causes me to put ointment on the corners of my mouth multiple times throughout the day—and I realized that for the first two years after my husband died, I was in such a fog I didn’t notice things that caused me physical pain. I didn’t notice the corners of my mouth cracking—but I’m sure they did.

I think I was too consumed by emotional pain for physical pain to even register with me. Not too long after my husband died, I had two major surgeries: a hysterectomy a few months after he died and brain surgery a little over a year after he died. I bounced back from both quickly enough to surprise my doctors and hardly touched the pain medication offered after both. I hope I would have done that regardless, but now I wonder if general grief and numbness to my own condition contributed, making me unaware of physical pain.

I’m not saying grieving improves your pain tolerance but rather that grieving can impact your pain tolerance. I suspect some grieving people would have the opposite happen—less tolerance for physical pain.

For me, this new awareness of my own physical pain corresponds to a generally heightened awareness of my own needs. I’m not just trying to get through the days as much. I’m noticing myself being hungry and thirsty in ways I haven’t for a long time. I’ve been hungry and thirsty since my husband died, but the hunger and thirst felt somewhere in the distance, not quite in my body. The sensations were reminders of something I had to deal with, but I felt detached from it. That detachment is fading.

So much of the first two years after my husband died is hazy in my memory but lately I’ve noticed my memory for things happening seems sharper. I’m better able to remember what I did last week or a few months ago. I don’t feel disoriented all the time anymore. The fog of grief that was a layer between me and everything else is fading. The grief is still there but it every experience I have isn’t filtered through it anymore.

As I make plans for the future, my first thought is no longer automatically about my husband being dead. I can now plan a trip and think about what I want to do without that thought being closely followed by, “He would love that” or “he would hate that” or “I wish he could have gotten to do that.”

What would have been his 64th birthday passed last week. Fits of weeping took hold of me several times, but unlike previous birthdays, I was able to focus on other things for a good part of the day.  

Before my husband died, I started working on a memoir of being my husband’s caregiver. We were actually working on it together, with me reading him what I’d written and then him talking through his thoughts, which I added to the draft. We envisioned a co-authored memoir.

After he died, I kept working on the memoir, but obviously it was no longer co-authored. One challenge on this project has been seeing myself as the protagonist. Nearly everything I wrote before he died positioned him as the protagonist and me as his trusty sidekick. After he died, it was hard for me to shift that focus and at some point I realized I was writing a memoir of my husband rather than a memoir of being his caregiver. I was writing from the perspective of his caregiver, but it wasn’t about my experience, it was about his through my eyes.

I’ve continued to struggle with positioning myself as the star of the story, but this new experience of being aware of my own physical pain seems like a positive development. I wonder if I’m entering a new phase of grief, one where grief is still with me but it isn’t the membrane through which all experience is filtered.

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

Bursting into Flower in Slow Motion

I recently came across Muriel Rukeyser’s brief poem in response to Sylvia Plath’s death, “The Power of Suicide”:

The potflower on the windowsill says to me
In words that are green-edged red leaves :
Flower     flower     flower     flower
Today for the sake of all the dead      Burst into flower

I love the sentiment of living harder in honor of people who don’t live anymore. This is what I have been trying to do since my husband died 6 ½ months ago. My husband was known for living life to the fullest and when he passed away, I felt strongly that the most fitting way I could honor his memory would be to embrace life, have adventures, and bring joy to others. Although I have felt intense sadness, I’ve also felt intense happiness, sometimes at the same time.

Many times since my husband’s death, as I’ve navigated doing alone what I thought I’d have a partner along with me for, I’ve felt something like “bursting into flower,” although the phrases I’ve been thinking of are “blossoming,” “coming into myself,” and others that capture the slow, gradual nature of what seems to be happening.

Last week, I read an excerpt from Ocean Vuong’s novel, On Earth We’re Briefly Gorgeous, in which he observes, “If, relative to the history of our planet, an individual life is so short, a blink, as they say, then to be gorgeous, even from the day you’re born to the day you die, is to be gorgeous only briefly.” That reminded me that the time that Tom has been gone—6 ½ months—is just a flash in the grand scheme of time, and that this blossoming that seems to be happening slowly, is, relative to “the history of our planet,” bursting into flower. So this week, I’ve been thinking of myself as bursting into flower in slow motion.

What isn’t possible one day often feels possible the next. One day, even looking at his clothes didn’t feel possible; a few days later, looking at them felt possible; a few weeks after that, moving them out of the closet felt possible. They are in the garage now, and one day, it may feel possible to give them away. The day I collected his ashes from the mortuary I carried the very heavy box around with me for most of the day; being apart from them felt impossible. The very next day, it was possible to leave them on my nightstand. One day I moved the box into a drawer. Over time, I’ve been able to scatter some of the ashes.

I wrote earlier this month about moving the glass of juice Tom drank the night before he died from the front of the fridge to the back. Today, I took a deep breath, excavated the juice glass from the back of the fridge, and moved it to the sink. It was gut wrenching—saying good-bye to the glass of juice is just another good-bye to Tom. The good-byes seem to keep coming. Good-bye to this mug of his and that book. Good-bye to the piece of paper he wrote on, good-bye to his hats, good-bye to his toothbrush. I have said good-bye to hundreds if not thousands of Tom’s things in these 6 ½ months.

This week it was the juice glass and a jar of pickles he bought at a farm market Lily and I took him to a month before he died. There will be something else next week or the following week. Or maybe it will be a few weeks or months before I am able to part with something else of his. Twenty years from now, looking back at these months, it will probably seem as if I got rid of things quickly, packing up Tom’s 61 years of life in a flash. The deliberation over each item, the stopping to dwell on a memory, the gentle interventions of the dogs to comfort me will all be erased and all that will remain is a line of my personal history: I packed up Tom’s things.

Somewhere in my personal history, it will read “After her husband died, she traveled to Europe and South America and Antarctica.” It will appear that I burst into flower, going from afraid to travel alone with my impaired vision to traveling the world in a flash. All my minor mishaps last week in Portland, Oregon, my first solo trip since Tom’s death, will be invisible. I did not burst into flower in Portland—I tripped off a curb into oncoming traffic, I wandered onto a construction site and had to be escorted off, I needed the help of multiple strangers to find and buy a cleaning cloth for my glasses when I got caught without one in a rainstorm and couldn’t tell the difference between the sidewalk and street.

One day, maybe when I am scattering some of Tom’s ashes at the tip of South America, a place he dreamed of riding his motorcycle to, I will remember how in the days after Tom died, the idea of traveling without him felt fantastical. I wasn’t sure I could ever find my way around an unfamiliar city on my own, navigating so many obstacles with my impaired vision. The mishaps in Portland will likely be condensed or maybe even forgotten, and I may think, “Here I am, on a continent Tom never made it to. Look at me, bursting into flower for his sake.”