I cringe every time I hear it.
- “It’s so sad … he’s just gone.”
- “She’s not herself – it’s not her anymore.”
- “He’s totally not there.”
- “She’s checked out – who she was is lost forever.”
These kinds of comments are painfully common when people talk about a loved one who has dementia. The speaker feels that the person living with Alzheimer’s disease or other dementia is “gone,” no longer living in the-land-of-the-rest-of-us.
But is that true?
Your loved one who now has Alzheimer’s or another dementia is changed, no doubt about it. They are not the same person they were a year ago. Then again, I’m certainly not the same person I was in my 30s, and you’re not the same person you were when you were a toddler or teenager.
Of course, I know we’re talking about a very different kind of change with any kind of dementia. It’s not a healthy change, in the sense of growing and evolving into someone more mature or experienced, like a child growing into an adult. Dementia’s kind of change is caused by a relentless disease, the person won’t grow out of it, and it’s difficult and painful to witness.
But the person you love is not gone. That person remains a living, breathing human being. Dementia does not erase identity. It changes it.
Do memories equal identity?
A common belief is that memories make us who we are. Well, yes and no. Memories are important, but I don’t think they exclusively define who we are. Your memories of the Grand Canyon are not themselves your experience of the Grand Canyon.
We’ve all been shaped by what we’ve experienced, even though none of us remembers everything that influenced us. Even if your father doesn’t remember who you are, your relationship is still part of what shaped you both. And it continues to shape you. You are his child; he is your father. That reality has not changed even if it cannot be articulated verbally or accessed mentally.
Who sets the rules?
It’s easy to get stuck in relating to people only through shared memories. Those are the touchstones we’re comfortable with, and we become profoundly uncomfortable when that relational pathway is removed.
I want to gently point out that this discomfort says more about you than about the person with dementia. You want the person to relate to you as you are, rather than as they are. It’s a natural self-centeredness, but unhelpful. Newborn babies can’t interact with or even smile at their parents, and yet good parents love them and relate to them as they are, in both verbal and nonverbal ways. One of dementia’s disguised blessings is that it challenges us to be less self-centered, to love without the benefit of the “normal” feedback we’re used to.
We need to find ways to relate to elders with Alzheimer’s and dementia on their terms, not ours. Your loved one is both who they were and someone new. They might or might not have a mental connection to their immediate surroundings. They may have no recollection of the things you think are important to their identity: name, former profession, family relationships, beloved hobbies. But they know what they are experiencing and what they feel: scared, happy, angry, comforted, peaceful, interested, bored, hungry, pained, and more. This is their reality, and this is where you need to meet them.
Don’t get me wrong. I’m not saying, “Get over it.” I know it’s extremely painful to see someone lose so many of the skills and traits we’re used to. These things are how we and the rest of the world formed a picture of their identity—and we cling to it.
But when your loved one has dementia, you need to let go of that former picture as the only definitive picture of who they are. I’m not asking you to negate or deny that previous picture; I’m encouraging you to add to it with the person’s new, current, and valuable reality.
Your loved one is not gone. They are right there in front of you. It’s your job and my job to see and interact with who they are right now, to stop hoping or insisting that they remain who they were, “or at least try.” Who they are right now is not their fault. And they want and deserve to interact right now—to be themselves.
Grieve the receding of that previous identity (and that takes a while, for sure)—but not while you’re around them. With them, accept the change and embrace the new version of who they are, day by day. If that means letting them tell the same story or ask the same question every five minutes, so be it. If that means going along with who they think you are (their long-dead mother, or spouse, or nurse, or secretary), go with it.
How to relate on dementia’s terms
Before he got Alzheimer’s disease, my father-in-law was a brilliant orthopedic surgeon—incredibly smart and accomplished. It seemed that our entire town knew him and loved him. He would regale anyone with stories of growing up in Nebraska or hunting on the South Platte River; he was funny, happy, and on the go all the time.
With Alzheimer’s, he changed dramatically—and it was us, his family, who had to learn to accept who he was and to enjoy our time together on his terms. It took a while, but my husband learned to speak nonsense right along with his dad, and they’d both laugh uproariously. Dad would kiss my hands repeatedly, and instead of drawing away I’d thank him and tell him I loved him too. In the car, every few seconds he’d ask what direction we were headed, and we’d give an update (thank goodness for the dashboard compass). He’d snap his fingers to some imaginary beat, and we’d dance along.
These new ways of relating didn’t make him less of a wonderful man or demean his dignity; in fact, the opposite. They made our time with him joyous for both him and us. They helped us walk alongside him in his weird, wacky journey with more peace than if we’d continually wrung our hands over all that he had lost.
I have had countless interactions with elders living with dementia that were beautiful and meaningful—often without an exchange of words or recognition. Maybe they only share eye contact with me, or I sing over them while they lay with eyes closed, or they squeeze my hand, or we share tears as they lean on my shoulder.
Maybe it’s a “word salad” conversation, where I have no idea what’s being said. I work to pick up emotional cues, which helps me to reassure them, and the time often ends with a smile or hug or kiss. I often say, “I’m with you, your family knows you’re here, you’re safe here, we’ll stick together, no matter what.”
There’s an aspect about the grim narrative of Alzheimer’s that I want to change. Yes, it’s an awful disease—but that is not the only truth in the Alzheimer’s world. There is so much beauty and blessing in it, too. And though memory loss steals so much, it does not steal your loved one’s total identity, and it does not make them less of a human being.
Don’t live in regret and the past; open your eyes and heart to see, live in, and respond to your loved one’s reality now. Memory loss brings an unexpected blessing: the gift of living entirely in the present moment. Embrace that gift for yourself, too.
P.S. I would love to hear your insights, tips, and experiences, so please feel free to comment in the comments below. And, if you think this topic of identity is as important as I do, please use the “share” buttons below.
P.P.S. Thanks to several of you, I’m super close to my fundraising goal to complete the last edits on the Hymns for Alzheimer’s project (woo hoo!). If you’re interested in contributing any amount, go to my GoFundMe page. Thank you!