'16 things I would want if I got dementia'
Some suggestions and ideas for those living in the land of dementia
<Welcome to Sandwich Season, where I explore the burdens and blessings of life in the sandwich generation—in the hopes of encouraging others in similar seasons.>
Hello everyone—
I’ve had several conversations lately with friends whose loved ones are experiencing dementia and with a friend who is facing this condition. Each one has transported me right back to memories of my mom’s journey.
Dementia is a hard and heartbreaking path. Yet looking back now on my last years with Mom, I recall moments of levity, and I carry with me some truly joyful memories of being with her, even as she went through the many changes dementia brings.
Thinking back, some of the best wisdom I received was: “No one has ever won an argument with someone with dementia.” In my experience, that’s mostly true. (But it doesn’t mean I didn’t try … )
I’m curious: What’s your best piece of advice or wisdom related to dementia? Your answer might help someone else.
In the United States nearly 7 million people ages 65 and older are living with Alzheimer’s, according to the Alzheimer’s Association. By 2050, that number is predicted to rise to nearly 13 million, unless a cure or preventive measures are found.
It would be helpful for all of us to have a sense of what it means to experience dementia and how to engage with those in the midst of it.
Not long ago I ran across this poster listing “16 Things I Would Want If I Got Dementia,” by Rachael Wonderlin, a dementia consultant. It contains so much loving wisdom that I want to share it with you. You can download your own copy and find more information about her here. (Full disclosure: I am brand new to her work.)
I’ve printed off a copy and am adding it to a new section in my “If I’m Dead” binder. (You might recall I started working on that last fall.) I’m calling this new section “As We Age,” because who knows what’s ahead for any of us?
For all of you who are dealing with dementia in one form or another, please be patient with each other and very kind to yourselves.
And if I may offer one piece of hard-won advice: Bring in helpers sooner than you think you need them. Respite care can be a game-changer.
All best wishes,
Sarah
P.S. Here are a couple of posts I’ve shared involving my family’s experiences with dementia, including some resources we tapped into. The third one includes a magazine piece I wrote for about a program where North Dakota State University students bring companionship and events to residents of a local memory care community.
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I would make lunch for my mother-in-law and we would eat together. Minutes later, she would ask me when we were going to have lunch. I told her we already did. This happened over and over until I finally said, "Okay, let me make lunch for us." And I did and we ate again. Oh well.
Early on have a "Goals of Care" Conversation. My husband wanted three things, to live in our house as long as possible, to avoid going to a facility if at all possible, and to sleep in the same bed with me.