My mom was just diagnosed with dementia. Where do I start?
A daughter caring for her mom, two kids, and a marriage asks where to begin after a dementia diagnosis. Noni’s answer: not with a plan, and not alone.
My mom was diagnosed with dementia this afternoon. We’d noticed her forgetting things for a while, but hearing the doctor tell us officially made everything so real. We had always hoped, perhaps optimistically, that the signs were just part of getting old.
She lives with us: my husband, our two kids (9 and 13 years old), and me. It’s been a few hours since the diagnosis appointment, and I’ve been hiding in my room in the dark, completely devastated. My husband has been sitting with her, and he says she’s pretty overwhelmed too. In an hour I’ll have to wipe my face and make the kids dinner like nothing happened.
I don’t want her to see me like this. I have work tomorrow, kids to send to school, and a relationship to keep afloat, all while trying to do my best for Mom. No one prepared me for this, and I’m terrified of getting it wrong. Where do I even start?
Dear Out of My Depth,
Before you tell yourself to pull it together and get on with things, give yourself a minute. You might be scared, sad, angry, overwhelmed, or feeling everything all at once. There’s no one right way to feel about something like this. You can love your mom fiercely and still hate that this is happening to her.
Meanwhile, life hasn’t exactly cleared your calendar to let you sit with any of this. Work carries on, the kids need to be dropped off at school, and you want to be present for your own life too. So, for tonight, let’s not try to solve dementia.
In my years as a nurse and through my own caregiving experience, I’ve seen how quickly we jump into fix-it mode. We start researching, planning, and worrying about things that may be years away before we’ve even processed what’s happening today. We want certainty. We want to know we’re doing everything we can to help.
But here’s the thing: your mom is still here, and she’s still your mom. There’s no rush. You can grieve what might be coming, plan where you can, and still make room for what’s happening for you both today.
There is no such thing as a perfect plan, or a perfect person, or a perfect daughter, caregiver, wife, or mother. You’re allowed to have messy feelings and not have all the answers. I’ve never met a family who had it all figured out.
Talk it out
You and your mom are both living through this change. I know you might want to put on a brave face for her sake. But let’s face it, neither of you is going to win an Oscar pretending everything is fine.
When you’re both ready, sit down and talk. It doesn’t have to be a big, “let’s plan for everything” heart-to-heart right away. You don’t have to know what comes next to begin talking about what’s happening now.
Ask how she’s feeling, what she’s worried about, or what matters most to her. And then, just listen. What keeps you up at night might not even be what she’s worried about at all.
A few questions to help the conversation along:
What worries you most about what the doctor told us?
What matters most to you about how we handle things moving forward?
What do you want to keep doing for yourself for as long as you can?
One thing to keep in mind: helping Mom doesn’t mean taking over for her. Your mom still has her own opinions, preferences, and ideas about how she wants to live. Make sure she has a voice in what comes next. And who knows? She may have some very strong opinions.
Find your village
Being there for Mom doesn’t mean you have to be a one-woman caregiving team. You have a life of your own, and unless you’ve figured out how to clone yourself, you’re going to need some backup.
Start with your husband. He’s already stepping up, and that’s a great thing! Talk about how you’ll share responsibilities while making sure there’s still time for your marriage, your kids, and yourselves individually.
Outside your house, think about the people your mom trusts too. Whether that’s friends, relatives, or neighbors, who would she enjoy spending time with? Include her in those decisions from the beginning.
Also consider connecting with a dementia caregiver support group. Sometimes the best advice comes from someone who’s already been there and isn’t going to judge you for admitting you’ve had a rough day.
It’s so easy to feel like, “I’m her daughter, and I have to figure this out alone.” You don’t. And I’m not saying you have to assemble an entire support team by the end of the week. Just start by recognizing who you can lean on, who your mom is comfortable with, and let them be there for you.
Remember that her diagnosis doesn’t need to define who she is, or what is possible for your lives. Mom is still Mom, Grandma, a sister, a friend. The shape of these relationships may change over time, sometimes in unexpected or challenging ways, but there’s still room for the routines, traditions, and weekend rituals you love. Maybe that’s getting Sunday sandwiches from her favorite bodega, sipping coffee in the garden, or taking a trip out to the coast.
There will undoubtedly be hard days, but this is still your life together, and there’s more of it to live.
– Noni
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Care manager
Noni, BSN, RN, is a Care Manager at Hera with over 20 years of nursing experience. She has also cared for a mother with dementia and a husband with ALS, and navigated serious health challenges of her own. Her perspective is shaped by working within the health system as a nurse and care manager, navigating it herself as a patient, and caring for loved ones as a family member. In Dear Hera, she offers families practical guidance, honest advice, and the reassurance that they don't have to figure everything out alone.
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