Tag Archives: love

The People You Don’t See When You Picture Dementia

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What does dementia look like?

Not figuratively—but literally?

When you picture a person with dementia, who do you picture?

Typically, we think of frail old people, looking confused, completely dependent on others, living in nursing homes, unable to carry on a conversation.

We rely on stereotypes to decide what certain groups “look like,” and people living with dementia are no different.

You should know that 10% of those with dementia are under the age of 65. Only about 20% live in a nursing home, assisted living, or memory care at a given time.

Some are in the workplace. Many are serving our communities with purpose and living lives of meaning. Some people with dementia have depression, but others do not.

They are just as diverse as the rest of us.

I remember a holiday season about 25 years ago. We were visiting my grandmother. She was working at a liquor store. She came home from work on Christmas Eve and let us know that–for the first time–she had some gay customers at the liquor store.

My grandmother was open-minded. She was not at all bothered about her gay customers, but she was really convinced that this was the first time she had gay customers.

She had a picture in her mind of how gay people would appear, and apparently this was the first time anyone fit into the box. Statistically, it would have been virtually impossible that these were her first gay customers.

I’ve had people who are waiters in restaurants tell me that they’ve never waited on anyone living with dementia. At one point, I tried to convince the owner of a bookstore to make his business dementia friendly. He told me that no one with dementia had ever been to his bookstore.

And there was the time that I had a conversation with a manager at a hotel about ways to make travel more dementia friendly.

“It’s not like people with dementia actually travel. I’ve never seen one at this hotel,” he said.

We still lack understanding that there are people with dementia living in our communities–just doing their thing. They aren’t wearing special bracelets and they aren’t labeled with tattoos.

They are just people, like the rest of us.

My team is passionate about doing dementia education for those who work in residential senior care.

But it can’t end there.

We need communities to start understanding that people living with dementia are among their residents.

They’re not really unique or special. We should not patronize or underestimate them. A diagnosis does not erase a person’s values or humanity.

When we talk over them or assume incompetence, we create barriers that are as limiting (more limiting) than the condition itself.

I get frustrated with the “before and after” dementia narratives. Those stories reduce a person to a single decline arc and imply that everything meaningful existed only in the past–before the dementia. A more honest approach focuses on adaptation: what has changed, what remains, and what kinds of support are helpful.

That same thinking shows up in how we expect dementia to be visible and obvious. When we rely on decline-based narratives, we also start looking for a certain “look” to confirm our own expectations.

Dementia does not have a look.

The sooner we stop searching for visual markers and start assuming variability, the closer we get to communities that actually know how to include people living with dementia.

Love and Lipstick in Dementialand

aging, alzheimer's, dementia, families

I used to visit a particular nursing home frequently. I often saw a woman with dementia and her husband. She had been at the facility for several years. He lived down the road at a retirement community but spent most of his days with her at the nursing home.

Her makeup was always perfect. Foundation. Lipstick complete with liner. Blush (or rouge, as I’ve learned it is called by older women). It was a bit dramatic for my taste, to be honest, but applied with professional precision.

Her hair was always matted in the back because she was in and out of bed all day. But never a flaw in her makeup.

She was non-verbal and had what I called the dementia gaze. She was looking at you but not looking at you. I often watched her husband assist her with meals. Although it appeared she had no clue what was on the spoon, her husband made sure she didn’t eat anything she didn’t like–although someone might think she would not have known the difference. He’d say things like, “I’m not giving you any broccoli. I know you hate your broccoli, don’t you?” It took him forever to feed her, but he’d always comment that he was retired and had nowhere else to be.

It didn’t matter to him that she didn’t seem to know who he was. He was there for every meal. He chatted with her constantly, sometimes telling her awful jokes that were often a bit off-color. He talked about their family. One day he brought in a picture their granddaughter had drawn. He was unfazed by his wife’s apparent lack of response.

I saw them in passing for several months. I typically exchanged pleasantries with the husband. One day he told me they were celebrating an anniversary. “You know it’s a special occasion,” he told me, “because she’s wearing her red lipstick instead of her pink.”

I had been curious about the perfect makeup, to say the least, so this peaked my attention. He added, “You know, I’m her makeup artist.”

He told me the story. She had been diagnosed with Alzheimer’s a decade earlier. Always a beautiful woman (and never seen without makeup in public), the thought of not being able to apply her own foundation, rouge, and lipstick was terrifying. He told her that was no big deal…he would learn to apply her makeup. And he did. I told him that I’d let him put makeup on me anytime, and he seemed flattered.

Life had another curve ball in store for this couple. He was diagnosed with cancer and underwent surgery to remove a large mass from his pelvis. Sadly, he never woke up. She lived several more years. It’s not unusual that the caregiver passes away before the person with dementia, but this situation was really difficult for me to process. I hated going to the nursing home and seeing her without her makeup.

But I don’t think she missed her husband. You can’t miss your husband if you don’t remember you had one.

I didn’t mean for this post to be so sad, really. What I want you to pull out of their story is not sadness or tragedy (although there’s certainly a great deal of sadness and tragedy here); it’s LOVE. Focus on the love. The world would be a better place if everyone was loved like she was loved.

I’ve seen love in Dementialand that I’ve seen few other places. We continue to love people who don’t know who we are. Our spouses and parents view us as strangers. If someone doesn’t know who are you, can they still love you? Or does it even matter? Because you love them anyway. On most days, I am more in awe of the love that exists in Dementialand than the sadness than inhibits it.