Dementia Doesn’t Have to Be a Death Sentence

Never give up. Never stop fighting.

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You get that diagnosis—finally. Sometimes, the diagnosis alone takes years, and you are just relieved that the problem has a name. This is an actual disease, and neither one of you is crazy. You are also terribly sad because the diagnosis goes like this: “You have [ fill in the blank ] dementia. There is no treatment and no cure. Go home and get your affairs in order.” 


In our case, “fill in the blank” was Frontotemporal Degeneration, a disease we never knew existed before November 8, 2016. But even had it been Alzheimer’s, an everyday sort of word, it would have been no less terrifying, no less devastating.  


Someone once told me that when speaking of dementia, the term “recently diagnosed” covers two to three years. It takes that long to get past the initial terror, confusion, and grief and move on to practical everyday living. It takes that long to get your financial and legal affairs in order.  It takes that long to get the hang of it, or maybe it’s the swing of it, because dementia is certainly not static. It gets better. It gets worse. You hit a plateau. You fall off a cliff. Sometimes all in one day. 


If you have been at this for any length of time, you learned to “pivot” long before COVID made the term fashionable. Today she is anxious, and loud noises make her cry. She can’t sit still; she can’t focus. Tomorrow, she may sit with a young person contemplating priesthood and talk for hours about systematic theology.  And you—the care partner*—become a creative facilitator, trying to maintain an environment more conducive to theological discussions than to anxiety and tears. It’s a moving target, and sometimes all of those emotions and scenarios take place in one day.


Technically, dementia is considered a terminal disease—but I hope that someday the medical establishment will treat it as a chronic disease. It usually goes on for many years, and not all of them are spent drooling in a corner. Yes, you still have to get your affairs in order. And yes, it will end your life, eventually. But in between those two things could be many years of joy and laughter, dreams realized, and bucket list items checked, as well as the ups and downs that cause frustration and require…well…pivoting. May it be so.


*In our family, we use the term, “care partner” rather than “caregiver.” Right now, we are a team, navigating this disease together. The time will come when I will graduate to caregiver, providing care and facilitating care from others. When that happens, we will apply that term to our life.  But not yet.

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