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My husband, Robert, was diagnosed with Frontotemporal Dementia (FTD) in 2017. Frontotemporal dementia is not the same as Alzheimer’s; the parts of the brain impacted are different, and both the symptoms and the course of the disease are slightly different. With Bruce Willis’ and Wendy Williams’ FTD diagnoses, perhaps more attention will be focused on FTD, and that would benefit all individuals and families dealing with this tragic disease.

This blog is in part about why and how I placed Robert in a home. It is about how I manage grief without an ending. But it is also about how I have rediscovered myself and created a life outside of and with my ongoing relationship with my husband…who is “here and not here” at the same time.

I hope these stories ring true to other people navigating this terrible disease. The journey is lonely, often sad, sometimes funny, frustrating, and always educational. I also hope that speaking about my experience will help others find permission to keep on living with all the travails and joys this life can offer.

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