My mother has dementia

This is the first in a series of three articles about dementia.

We had a guest, years ago, who told us that her mom was chiding her dad for visiting his friend who had dementia, because the friend didn’t remember him. Our friend apparently saw it as her mom did: that it seems like a waste of time to visit someone who doesn’t know who you are.

The way our guest told it, her mom kept asking her dad why he went to visit, but her dad didn’t have an answer. Back then, I might not have had an answer either.

At that time, I had not yet come face-to-face with dementia. Like our friend’s dad, I had the sense it’s a good and compassionate thing to visit loved ones who have dementia, but I couldn’t have explained why those visits also make practical sense. I didn’t understand then how dementia can affect someone’s brain and emotions.

Now my own mother has dementia. I also have a second mom, my “Korean mom”, who has dementia. A close friend’s mom also has dementia. And I have other loved ones whose parents have received a dementia diagnosis.

It took me a long time, after my mom’s diagnosis, to say aloud, even to my closest friends, “My mother has dementia.” It’s taken even longer for me to put those words in print.

But now I’m saying those words often, and many others are saying them too.

Perhaps you’re saying them, about your mother or father or other loved one.

Perhaps these words are about you.

For each person with dementia, the diagnosis may be slightly different.

Alzheimer’s Disease is the most common type of dementia, and some of my loved ones have that diagnosis.

The second-most common type is vascular dementia, and one of my people has that diagnosis.

Others’ dementias have different descriptions, but whatever the specific diagnosis, dementia in each person presents as uniquely as the person who has it. Even people with a similar diagnosis display varied symptoms.

But many things about people with dementia are also the same. Despite the stereotypes, people with dementia remember many things, both short-term and long-term. People with dementia have a range of emotions. Like the rest of us, they need and want to be loved and to be treated with value. They want fun and interesting activities to occupy their time. They value a sense of purpose, a sense of accomplishment, a sense of learning something new.

Most people with dementia are also precious to their families. They are loved. Most of them are cherished. And every single person with dementia is precious to their Creator, the God of the Universe.

Since that day when our friend’s mom protested the futility of her husband’s visits to his friend with dementia, I’ve learned why it’s important to care for loved ones who have dementia, even when they don’t remember who we are.

I’ve learned that dementia affects the various parts of the brain in different ways. If the dementia is sufficiently advanced, the person might not remember, for instance, that you came to visit or styled their hair or brought ice cream. That’s because dementia has hampered the part of their memory that holds those memories.

However, they can still feel joy and delight from your presence and the hairstyling and the ice cream. And they may remember their feelings of joy and delight much longer than they remember the activities that made them feel that way. That’s because emotions about a memory are stored in a different part of the brain than the event’s factual details. And for many people who have dementia, that emotional part of their brain can still retain memories.

So, whether or not your loved one remembers that you styled their hair or brought ice cream, they’ll likely remember how your visit made them feel – joyful and wanted and loved. What’s more, they may continue feeling happy for hours after your visit, even if they don’t remember why they’re so happy.

They may also remember many meaningful things, even if they’ve forgotten others. They may remember you, even if they don’t remember everything about you.

And regardless of how much they remember about you, you can still remember them.

For years, whenever I greeted my Korean mom, she’d respond warmly, “My loving daughter.” And I’d say, just as warmly, “My loving mother.” These were expressions of affection, of course, as well as a private joke, since anyone looking at us can tell we’re not related by birth.

These days, when my Korean mom sees me, her face still lights up in a way that makes my whole day brighter. She knows me and remembers me and cherishes my attention. And she greets me as warmly and eagerly as before.

But now she says, “My loving person.”

She’s forgotten that she used to say, “My loving daughter.” She’s forgotten our special understanding. 

That tears my heart a little.

But she still remembers me. She still remembers that we’re close friends.

And I have not forgotten. I still call her my Korean mom.

A few years after our friend wondered why her dad would visit someone who didn’t remember him, I went to visit her parents. Her dad was in a care residence then, needing physical care and dealing with memory loss. His wife spent most hours of most days with him.

This devoted wife told me as we visited, “I’ve learned something from coming here.” She gestured to the other elderly, frail residents around us, and said with a kind of wonder, “All these people – they were somebody!”

Yes, I agreed. They were somebody.

They were nurses or farmers or homemakers or clerks or pastors or truckers or teachers or mechanics or business owners or carpenters or engineers or cleaners or receptionists or caregivers or athletes or artists. They were joggers or booklovers or crafters or mentors or joke-tellers or chocolate lovers. They were beloved friends and family members.

They definitely were somebody.

But dementia didn’t stop that. They still are.