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.
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