LETTER TO THE EDITOR: Food for thought on Frontotemporal Degeneration

You would think that a combat veteran could handle most situations.

But here I was, breathing though my mouth, blinking my eyes rapidly, heart pounding. I had to get out. I was afraid I would “lose it” if I were not relieved of my duties immediately.

I said to the nearest uniformed person, “Please come take over.” Then I fled the space, turned in my badge without speaking for fear I would break down, stumbled out of the building, and sat in my vehicle crying until I had no tears left.

Fallujah? Kandahar? No.

I was in the private dining room of the Blue Unit at the Delaware Veterans Home. I was feeding my husband for the first time.

I had been taking my therapy dog with me to visit since the preceding March. We would leave when the meals arrived, so I had not seen my husband eating. I did not know until that very moment that he had forgotten how to feed himself.

Not only did he no longer know how to handle the utensils, but he did not seem to understand the purpose of

Eugenia and Don Thornton in the Delaware Veterans Home in Milford on Memorial Day. (Submitted photo)

sitting at the table.

As I was cutting the food, he was rising. Then I put the fork up to his mouth and he sank back to his chair to eat. Then he would rise again while I put more food on the fork. No wonder he had lost so much weight!

This was Memorial Day 2017, and since that time, the Veterans Home cut back on his medications and also now serves him only finger food, which he can manage somewhat on his own.

The staff still has to sit with him to keep him engaged. And they have to work hard to get him into the dining room and keep him there. So do I, whenever I am with him at meals. I have learned patience and acceptance from watching other loving spouses in the Blue Unit.

Thankfully, he can still chew and swallow. The loss of those abilities will signal the end stages of his disease. This is what I was thinking of when I fled the room. I feared his disinterest in eating as a harbinger of the beginning of the end.

My husband has Frontotemporal Degeneration (FTD), a fatal disease most people have never heard of until they receive their diagnosis.

Life expectancy post diagnosis is an average of two to eight years, though some have lived for more than 20 years.

The nerve cells in the front and sides of my husband’s brain are dying. As a consequence, the brain tissue shrinks, taking with it all sorts of memories, skills, behaviors, speech and motion control.

FTD can progress in a smooth fashion but it can also take leaps downward between periods of stability. Towards the end, the periods of stability grow shorter.

Thank God my husband is still in the advanced stage, not the end stage, of FTD. He can still walk, but more haltingly. He is falling more. He has friends in his unit. He has his favorite nurses. He has a big smile when a dog enters the ward. He seems content, even happy.

The last week in September and the first week of October have always been special weeks for my husband and me. He turned 70 on Sept. 30, and we had our 41st wedding anniversary on Oct 2.

More meaningful to us both, now, is that these two weeks are earmarked as Food for Thought by the Association for Frontotemporal Degeneration (www.theAFTD.org).

This is a time when discussing FTD is encouraged over a shared meal. It is a time for spreading the word about the disease and its impacts on loved ones — How to best cope, because there is no cure.

I have shared my memory of a meal I saw as a turning point in the progression of his disease because I want you to please share what I have written with others over a more pleasant meal in your own homes and while out with friends.

We need to spread the word because there may be people out there suffering and they need to ask the questions, “What if it is not Alzheimer’s? What if it is FTD?”

Most important, please share the famous words of Ferris Bueller, “Life moves pretty fast. If you don’t stop and look around once in a while, you might miss it.”

Eugenia Thornton

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