I started writing this blog as a way to express the myriad feelings (good, bad, and ugly) that arise as Robert’s dementia progresses. This disease has made me question my place in the world, my marriage, and my way of being and interacting with the people I love. I’m not a writer by training, but I hope these sometimes sad, sometimes funny, always heartfelt stories will speak to you. 

The names of my children have been changed in these stories to give them the privacy to process their father’s disease in their own time and on their own terms. While we share the experience of Robert’s cognitive decline, our individual relationships with Robert are our own. Each of them is unique. (Of course, if you happen to know us, personally, you’ll make quick work of my pseudonyms.)

I’ll share what I have learned (and continue to learn) about dementia, about the for-profit enterprise of residential facilities, and the limits of our systems of care. I will also share my candid, perhaps provocative reflections on what it means to be human when our minds leave us.

If you are caring for a loved one with dementia, I hope that you may you find a bit of grace in your days. If you have a story to tell, please tell it. It is critical that our voices be heard. Dementia is devastating to families, and it is a burden that cannot easily be laid down. By 2030 it is estimated that 9 million people in the US will have dementia. By 2050 that number will grow to 12 million (PRB.org). Let’s end it.