Katherine Vaccaro on her husband Daniel’s dementia journey and why they used the Compassion & Choices Dementia Values & Priorities Tool.

My husband Daniel is one of those people who is gruff on the outside but is actually a kind and highly sensitive person. Even in the midst of his dementia, he thanks me every day for taking care of him. 

Daniel’s memory slowly declined over the course of ten years and by 2022, it was fading dramatically. That’s when I got serious about making plans for our future.

The Dementia Values and Priorities Tool simplifies the planning process for dementia caregiving and treatment options 

In April 2024, I learned about the new Dementia Values and Priorities Tool from Compassion & Choices. Immediately Daniel and I sat down together to fill out the form. The process was so simple. I’d been overwhelmed by thick books about dementia and dementia caregiving, but this was so much more accessible. Daniel was very clear: “I don’t want any life-prolonging treatment if I can’t speak or make rational decisions. I don’t want food or water. I want a natural death as soon as possible.” 

I reminded him that as his healthcare proxy, it will be my responsibility to represent his wishes and fight for them to be honored, so it was very important that he be certain this was what he wanted. He was resolute, and we called over our neighbors to witness his signing. 

The dementia tool is a great first step in advance care planning for people dealing with this disease. I’ve since recommended it to a number of people, including those in my caregiver support group and beyond. 

Feeling confident about a loved one’s wishes can bring peace to a challenging path

Today, Daniel remembers very little about his career and nothing about our marriage. He has almost no short-term memory. He sleeps a great deal, and it’s difficult to get him to eat normal foods. But in general his mood is still good. I know there will come a time when he won’t be able to thank me anymore the way he does now. I know there’s a hard road ahead of us. But I’m thankful we’re facing it equipped with the resources from Compassion & Choices. I’m thankful I know what Daniel’s wishes are and am ready to do all I can to honor them. 

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