Tag Archives: hospice

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. 

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.