The First Question People Ask When I Tell Them My Mother Has Dementia

It’s a fair question, but it’s only the tip of the iceberg

Invariably, when people find out my mother has dementia and is Memory Care, they ask one question:

“Does she know who you are?”

Relatives and friends ask a variation of the question: “Does she still know you?”

It’s a logical question, and one that I know people use to judge just how “bad” my mother’s dementia is.

People think they know about dementia. I thought I knew about dementia.

We’re all wrong.

To answer your question, yes, my mother still knows who I am. She knows my name and she mostly knows that I am her daughter.

It’s nice that she knows me and my siblings, but it doesn’t really impact her day-to-day routine. She has now been in Memory Care for a year. Before that, she lived at home, but for at least a year before she could no longer live on her own, her children helped her every day, and for years before that, she still had a lot of family support. If I had to guess, I’d say she started developing cognitive decline in 2016, after my father died, and the condition progressed more quickly after she suffered a stroke in 2019 and began to lose her eyesight to macular degeneration.

She didn’t give up without a fight. She didn’t want to leave her home and she’s often angry with her children, thinking we know how to fix her eyes but just won’t take her to the doctor to make that happen. Which is emphatically not true. If there was a sure-fire way to treat macular degeneration, we would have pursued it. As it is, my sister is set to take her to her eye doctor tomorrow for one of her regular injections (yup, right into the eyeball, although they numb it first) to try and help slow down the process.

Nothing about my mom’s progress through dementia has been what I expected. I act like I am writing these essays to help other people learn about dementia (for their loved ones and for themselves) but we all know I’m basically lying to myself about that. Because it turns out that the shocking thing about the process of dementia is how individual it is.

I can share what I’ve learned about my mom’s vascular dementia, but if there’s one huge lesson I’ve learned, it’s that your mileage may vary.

I’m not really writing these pieces to help you learn. I’m writing them to help ME learn. If there’s anything here that you can use, that will make me happy. But mostly I have to write this stuff down, because I’m the type of person for whom things only become real, in a way that I can attempt to process them, when I write about them.

So allow me to present what I’ll call:

Early- to Mid-Stage Dementia — A One-Person Q&A

Q: Does your mother remember you?

A: My mother does remember me. She remembers my siblings. She has held on to this basic information so stringently and for so long and in the midst of so much other confusion that I’m starting to think maybe she will maintain it to the end? (But probably not.)

She is definitely having trouble remembering any of her grandkids’ names, even though several of them helped with her care while she was still in her home, and several of them still visit her on a semi-regular basis. When I take my middle-schoolers along to see her, she mostly knows they’re my kids and her grandkids, but she can’t remember their names.

Oddly enough, this has not stopped her from actually showing a little bit more interest in her grandkids than she ever has. She has always been a grandma who loves her grandkids and loved feeding them, especially baked goods, but she wasn’t the kind of grandma who was going to listen to anybody’s Minecraft adventures or musical exploits. My mother has always had a strong personality, with strong interests to match, and she wasn’t going to become interested in something you were doing just because you were her kid (or grandkid).

The last time I took my kids to visit, she acted much more like a traditional grandmother. She asked them about school and other events, like trick-or-treating (with some prompting). She is always glad to see them and actually listens to their conversation much more closely than she used to.

Q: Does she remember people from her past more than she remembers you?

A: My mother knows who we are, but at the same time she is starting to confuse her generations. She often asks for her brother Jack, but then starts talking about him in a way that helps us understand she is actually talking about her son. (And vice versa.)

When old friends or neighbors come to visit, she knows who they are. She is still able, if we dial for her, to call her sisters-in-law and lifelong friends and speak with them. She seems to forget what ages all of them are — she often asks her friends if their children are getting married, when she is really of the age when all her friends’ grandkids and great-grandkids are getting married — and she asks the same questions within each conversation, but if you ask her about people she has known her whole life by name, she mostly knows who you are talking about.

She has largely forgotten people she knew for finite times in her life. For many years she was a farm market vendor, and had customers who became friends for many years. Anyone she met in her middle or late-middle age, and knew for many years, those names and people she mostly doesn’t know or remember if you bring them up.

One of the things I had heard so often about Alzheimer’s in particular was that people retained their childhood memories after everything else was gone. I have not found this to be the case. She remembers a few things from her childhood, but mostly she does not talk about it, and if you ask her about growing up or her family, she mostly says, “I can’t remember any of that.”

I’d rather hoped I could spend time when I visited her in Memory Care learning more about her childhood and farming in the 1940s and 50s. This will not happen.

Q: Does your mother know people who she sees on a daily basis?

What has been shocking to observe is my mother’s absolute lack of short-term or working memory. I think she recognizes some of her caregivers, particularly by their voices or actions, but when I’ve witnessed them popping in her room to check on her or giving her medications, I’ve seen her ask them multiple times in a row what their names are. Some of the caregivers are people she’s seen nearly every day for a year.

We have been fortunate to find a facility with compassionate caregivers. They simply tell her their names, over and over and over, and have the conversations about who they are and why they’re helping her time after time after time.

My mother has also sat at the same table with the same three other residents or a year now. She calls them the “ladies at lunch” and, although she can recount some of the stories they tell, she doesn’t know any of their names.

It has been shocking to me to see how high-functioning a person can be in middle dementia but still not understand any of their present surroundings. My mother is still able to use her language skills to a high degree, is mobile, can feed herself, and can often use the bathroom on her own, as well as (sometimes) put on some of her own clothing. I have been surprised to find how long you can live, largely physically able, while not knowing who anyone is around you, where you are, or even what time of day or season it is.

So yes, my mom still knows me. If we’re all being honest, sometimes the fact that she does is the most heartbreaking thing of all. She knows me, she knows I’m her kid, and she thinks I should have the power to take her home, where she could take care of herself. She also knows that, wherever she is (she seems not to understand she is in what she would have called the nursing home), she is requiring more help than she ever wanted to require.

When I say goodbye after visiting, she invariably responds with, “You should take me home now, so you wouldn’t have to spend all this time taking care of me.”

Mostly her kids are all as literal and as non-sugarcoating as she used to be. So we used to try to explain that her living in the Memory Care facility actually did ensure that she could receive consistent care while her children attended to their own lives, jobs, and children. But that sort of thing just made her really angry — of course we had our own lives! If we would just TAKE HER HOME she could take care of herself and we could all save a lot of time!

But we’re learning.

Now we just say, “We love visiting you, Mom.” “Try not to worry, Mom, this is not taking too much of our time.” “We’re just happy to come see you, Mom.”

And then we have to walk out the door and try not to feel like absolute failures for leaving her with strangers. Unbelievably kind and skilled strangers, but still…strangers.

“Does she still know you?” is a fair question. Perhaps what’s really hard about that question is answering it.

Yes, she knows me. Yes, she knows she’s not where she wants to be. No, there’s nothing I can do to change that.

Each question about dementia seems invariably to lead to answers that it hurts to give.