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What I Wish You Knew: A Mother’s Letter About Living With Dementia 

  • Apr 9
  • 4 min read


What I Wish You Knew: A Mother’s Letter About Living With Dementia 

 

This week’s post is a little different. Instead of explaining dementia or offering advice, I wanted to share something that might help caregivers see things from another angle. The piece below is written from the point of view of a mother living with dementia. It’s a letter she might write to her daughter. 


Not everyone with dementia will have the same experience. But many families notice similar moments along the way: Confusion about belongings. Frustration about losing independence. Changes in how conversations work. Parts of this letter are inspired by real experiences shared by families who have cared for a parent with dementia. My hope is that it helps caregivers feel seen and perhaps offers a little comfort in the middle of a difficult journey. 

 


Dear Daughter, 


I’ve been thinking about you. Some days, my thoughts come and go. I start a sentence, then lose track of where I was going. Other days, things feel clearer. I don’t know what kind of day it will be when you read this letter. But there are a few things I hope you know. 


I know this hasn’t been easy for you. You’ve had to make decisions I never imagined you would have to make for me. Things like helping me move when it wasn’t safe for me to live on my own anymore. I remember how independent I used to be. Driving myself places. Taking care of my own home. Doing my errands without thinking about it. Losing those things probably felt like losing pieces of me. 


I know it couldn’t have been easy when you realized something was wrong. Maybe it was something small at first. A day when the house was too hot, and I didn’t remember how to turn the air conditioner on. A day when I forgot to eat or drink and didn’t understand why I felt so weak. Those moments must have been frightening for you. I imagine there were days when you wondered if you were stepping in too soon. Or maybe too late. I want you to know that you were doing what daughters do. You were trying to take care of your mother. 


There may be times when I say things that don’t make sense. I might tell you someone took something from my room. I might believe people are moving my things around. In my mind, it will feel very real. I won’t understand why no one else sees it the way I do. If that happens, please don’t feel like you have to prove me wrong. I know you. Your instinct will be to explain. To tell me that no one is stealing anything. That everything is fine. You’ll want to fix the problem. Just sit with me for a moment and understand that I’m upset. If I think someone took something, it’s because the world suddenly feels confusing. The feeling is real even if the story isn’t. If you say something like, “That must feel frustrating,” it will calm me more than an explanation ever could. 


I might also forget things about you. That one hurts to even write. There may come a time when you tell me about your day, and I can’t quite follow the story. I might stop asking about your work, your friends, your life. Please don’t think that means I stopped caring. It only means my mind can’t keep up the way it used to. You are still my daughter. Even if I don’t say it. 


There may be days when I’m suspicious of people around me. Days when I think someone is talking about me or planning something. I know that sounds strange. But inside my head, it will feel confusing and a little scary. What will help me most during those moments is knowing that you’re on my side. Just knowing you believe that I’m scared or upset will mean a lot. 


And if you can, keep bringing little pieces of normal life with you when you visit. Take me outside when the weather is nice. Sit with me in the sun. Bring something sweet to share. Chocolate, maybe. Or fruit. We don’t have to talk about big things. Sitting together might be enough. I may not remember every visit, but I will still feel the comfort of being with you. 


And there may come a time when eating becomes harder for me. You might notice I take a bite of something and just sit there with it in my mouth. Maybe I forget to swallow. Maybe I lose interest in food altogether. I know that will worry you. You’ve spent your whole life believing that feeding someone means caring for them. Mothers teach their children that. But sometimes the body begins to slow down in ways we can’t control. If that happens, please don’t feel like you have failed me. You will have done more for me than I ever could have asked. You stayed. You helped. You made the hard choices. You kept showing up even when it was painful. That is love. And even if my mind becomes quiet and distant one day, I believe some part of me will still know that. 

 

Love, Mom 

 

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