Monthly Archives: December 2024

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

Different not Worse: My First Christmas Alone since My Husband Died

It’s my fourth holiday season without Tom. Facebook’s “On This Day” feature has been particularly aggressive lately, serving up memories of holidays past like a relentless digital ghost. Here’s Tom and me at Christmas dinner with family. Here we are making latkes with friends. Here we are camping in Death Valley. Each photo is a reminder of not just what was, but what isn’t anymore.

I’ve always loved celebrations, even ones that aren’t technically “mine.” Growing up, I got to experience a mix of traditions—mostly Catholic until my mom died when I was 12, with a dash of Hanukkah from my father’s Jewish side of the family. What I learned from this blend wasn’t so much about religious significance as it was about the joy of gathering, the pleasure of good food, and the warmth of giving gifts. Even now, as a Buddhist adult, I’ve kept these celebrations alive in my own way, decorating a Christmas tree and hosting an annual latke dinner, creating my own meaning from these inherited traditions.

This is the first year since Tom died that I’m alone for Christmas. My daughter, stepson, and mother-in-law are all traveling. I keep telling people I’m fine with being alone—after all, December 25th is just another day when you strip away the cultural expectations. But there’s something undeniably hard about being alone on a day when it seems like everyone else is gathered with family. Especially when my own memories of the day are so vivid and happy.

Yesterday, I visited a hospice patient who’s unlikely to see New Year’s. We didn’t talk about the December holidays—I’m not even sure if she’s aware of them or if she cares about them. She wanted to talk about dying and what I knew about it from talking to other hospice patients. It was a good reminder that December 25 is not in and of itself anything special. I know her adult children feel like they should be with her on Christmas. They’ve decorated her house with a tree and replaced all the usual kitchen towels and potholders with red and green ones.

But grief and dying don’t care what the date on the calendar is. None of the holiday traditions can outweigh them. The tension between what dying people and grieving people feel and the insistence around them that this is “the happies time of the year” can make their grief feel even more isolating, as if they’re the only ones not participating in the mandatory joy

When I tell people I’ll be alone for Christmas, they immediately try to fix it. “Come to our house!” they say, or “No one should be alone on Christmas!” I appreciate their kindness, but sometimes being alone is easier than being the widow at someone else’s family celebration, watching their intact family traditions and trying to smile through the stomach-punch of grief that hits when someone makes a comment I know Tom would appreciate or a dish I know he would love is served.

I’ve noticed some folks in the Facebook Widow groups answering the question about whether they’ll be alone for the holidays with “I’ll be with my dogs,” “I’ll be with my cats,” or even, “I’ll be hanging out with my plants.” I love the way they are pushing pack on the idea that you’re alone if you’re not with other humans. And this reminds me that I won’t, in fact, be alone on Christmas: I’ll be with my two dogs, who are very cuddly in the winter.

Sometimes the kindest thing we can do for ourselves during the holidays is to accept that they’re going to be different now. Different doesn’t have to mean worse. This year, my Christmas plan involves Chinese food, snuggling with my dogs, and zero obligation to make conversation. That actually sounds pretty great.

I might spend some time looking at those Facebook memories, letting myself feel whatever comes up. I might text friends who are also alone or grieving. I might watch terrible holiday movies or ignore the holiday completely. The point is, I get to choose.

For others navigating holiday grief, whether it’s your first season without your person or your fifth, I want you to know that there’s no right way to do this. If you want to maintain all the old traditions, do it. If you want to create new ones, do that. If you want to pretend the holidays aren’t happening this year, that’s fine too. The only rule is to be gentle with yourself.

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

Aging, death

Don’t Inflict Your Toxic Positivity on a Dying Person

One hospice patient I visit lives with her daughter, Sarah. A visit with this patient is a visit with Sarah, as she almost never leaves her mother’s side.

Every time I visit, I see her mother’s decline: her shoulders a little sharper beneath her pajamas (the only clothes she wears now), her cheekbones more prominent, her energy more depleted. But every week, Sarah insists cheerfully that her mother is just having a rough day and will be better tomorrow.

On my most recent visit, Sarah hovered anxiously over her mother, who sat at the dining room table nursing a cup of coffee. Sarah arranged organic fruit on a plate and put it in front of her mother, explaining to me how careful she is to make sure all the food her mother eats is natural and organic even though she has trouble affording the more expensive groceries. The health benefits are worth it, she said.

While Sarah chattered about future plans, her mother’s eyes met mine across the table. She was tired. The contrast between Sarah desperately clinging to optimistic fantasies of recovery, meticulously monitoring every morsel of food, while her mother quietly surrendered to the inevitable was stark. When Sarah left the room for a moment, I asked her mother what she wanted. “I want to make Sarah happy,” she said softly, and then, “But I don’t think I can.”

I wanted to scream at Sarah, “Your mother is dying! All the organic food in the world won’t change what’s happening! She needs your support and love right now, not a special diet. Stop focusing on the food and start focusing on being present with her while you can.”

But I also understand where Sarah is coming from. I inflicted my own toxic positivity on my husband after his stroke and it took conscious effort to change my behavior. Once I started making that effort, I could see that it was what we both needed. Our conversations became more authentic and vulnerable when I accepted that sometimes things just sucked. I think it was a relief to him when I acknowledged that and let him grieve what he lost with the stroke.

When you visit with someone who is dying, it’s natural to want to find something positive to say. Maybe you’ll be tempted to talk about new treatments on the horizon, or remind them how many people beat the odds, or suggest they just need to stay positive. Please don’t.

Dying people don’t need our forced optimism. They need our presence, our willingness to sit with hard truths, and our acceptance of their reality.

Toxic positivity—the pressure to maintain a positive outlook at all times—can be especially harmful to someone facing death. When we respond to their dying process with “Stay positive!” or “Don’t give up hope!” we’re essentially telling them their feelings about dying are wrong. We’re asking them to perform optimism for our comfort.

Sarah tells me her mother loves my visits and I think I know why. When I show up, her mother can talk about her fears and sadness without being interrupted with a reminder to smile and be grateful. With me, she can discuss practical end-of-life planning without being admonished to “keep fighting.”

It’s ironic that Sarah wants to be closer to her mother in these last days or weeks or months, but by trying to force positivity into every conversation, she’s shutting down authentic communication. When we make space for someone to express their full range of emotions about dying—including fear, anger, and sadness—we often create moments of genuine joy and connection.

Being with someone who’s dying requires us to examine our own relationship with death and our own emotional limitations. If you find yourself constantly redirecting conversations toward the positive, ask yourself: Who is this serving? Am I trying to make them feel better, or am I trying to make myself more comfortable?

I’ve found these phrases to be particularly helpful for conversation that doesn’t hinge on the assumption of positivity:

  • “I’m here to listen, whatever you want to talk about.”
  • “What do you need right now?”
  • “It’s okay to feel however you’re feeling about this.”
  • “Tell me more about what you’re experiencing.”

Dying is a normal part of life. When someone shares their dying process with you, they’re inviting you into one of life’s most profound experiences. They don’t need you to fix it or brighten it or reframe it. They need you to witness it, to acknowledge it, and to accept it alongside them.

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

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.

grieving

Holiday Grief: Empty Chair, Full Heart

I set my dead husband’s photo at the table again this year, propped in front of an empty chair at our fourth Thanksgiving without him. I look to his spot at the head of the table and smile. It’s not like a wound anymore, but like a familiar mark on a cherished family heirloom. We raised our glasses to toast him. He’s always with us in spirit.

In the first few months after Tom died, I struggled to understand how I could feel such intense and seemingly contradictory emotions at the same time. It took a long time to realize that they aren’t really contradictory and both stem from the same root: crazy love. Now, grief sitting right next to joy, neither one canceling the other out, feels normal.

One of the biggest surprises of this grief experience has been realizing that grief is not the opposite of joy. I can sit at a Thanksgiving table bursting with laughter and love, while that empty chair holds its space. The laughter, the love, and the absence are all there together. My heart holds all of it.

The next day, as we put up our holiday decorations, I sighed to my daughter that I had been thinking about taking down the blueprints that Tom put over the glass of the French doors. Tom had taped them there as a temporary fix years ago until we could get proper window coverings made. When she suggested framing a piece of them, something clicked, like finding the perfect place for a memento you’ve been holding onto. So I took the blueprints down and folded them carefully. I admired the glass that has been covered now for nearly five years.

Taking the blueprints down felt momentous, and I’m sure some of my friends have wondered if I ever would take them down. When I eventually frame the blueprints, I’ll hang them on either side of the French doors, which may someday have those proper coverings. I love watching how my grief and memories of Tom unfold in these surprising ways.

Every Thanksgiving, gratitude for Tom tops my list – not just for the time we had, but for teaching me that life is delicious and even the painful parts deserve attention. Life makes room for the contradictions, the missing and the joy.

I can miss Tom with an ache that still takes my breath away AND live this ridiculously wonderful life I’ve built. I can feel the weight of his absence AND the lightness of new joys. The missing doesn’t dim the joy any more than the joy erases the missing. They’ve learned to live together, these feelings, like old friends who’ve forgotten why they ever thought they couldn’t share the same space.

My life has expanded in ways I never imagined—my memoir writing, this blog, my end-of-life work, epic travels—and somehow Tom’s still here too. During the holidays especially, I feel both things: the weight of his absence and the lightness of living fully.

Here are two ways you can support a grieving person during the holidays:

  1. Acknowledge the loss. Holiday cheer can make those of us grieving feel more alone, not less. The festive atmosphere can heighten awareness of who’s missing. Instead of avoiding mention of the person who died, share memories of past holidays with them. Ask about their traditions and favorite celebrations. Let the grieving person know it’s okay to feel both joy and sadness – that remembering their loved one adds meaning to the season rather than diminishing it. Invite stories, look at old photos together, or incorporate their cherished holiday customs into current celebrations.
  2. Hold space for contradictions. Grief and celebration aren’t mutually exclusive – many who are grieving want to participate in holiday joy while acknowledging their loss. Rather than making assumptions, ask what level of celebration feels right to them. Some may want to fully engage in festivities while others prefer to dip in and out. Create safe spaces within celebrations where they can step away to process emotions. Let them know it’s okay to laugh and cry, to toast their loved one’s memory and also enjoy making new ones. The key is giving them agency to navigate celebrations in whatever way serves them best.