Commentary: Shedding a tear for a warrior battling FTD

Subordinate officer, best friend, lover, wife, caregiver, advocate, mind reader — the evolution of my relationship with my husband.

Don suffers with Frontotemporal Degeneration (FTD), a little-known disease that cannot be prevented, cured, or slowed down.

The Association of Frontotemporal Degeneration’s Food for Thought Week and FTD World Wide Awareness Week coincide with Don’s birthday and our anniversary. To commemorate all these events, I build awareness of FTD by telling our story.

Since I wrote last year, Don was carefully weaned off all but one of the life-shortening psychotropic drugs that kept him manageable. He moved out of the specialized dementia ward at the Delaware Veterans Home (DVH) to another ward. These changes sound encouraging, but they are not.

Eugenia Thornton

They were only possible because the angry Army Ranger who road marched the hallways of the DVH beginning Nov. 17, 2015, is no longer hard to handle, no longer a flight risk. In fact, he no longer can move between bed and wheelchair or into a tub without being hoisted with an apparatus.

He cannot sit straight in his wheelchair. His body curling, his knees are drawn up as if sitting even when lying in bed. The flesh of his hands is marked with crescent shapes from the pressure of his own fingernails despite the best efforts of a padded brace meant to prevent damage.

A padded brace on his neck struggles to keep his downward-oriented head from lolling sideways. Soon a brace will be required to keep his feet where they belong on the wheelchair.

Ducking to see into his downturned face, I contemplate the blue eyes that once snapped with intelligence. I try to read his mind.

Does he want his foot placed back on the wheelchair or does he prefer it dangling down? If I put his foot on the platform where it belongs, it goes back to dangling before I can straighten from the task.

He looks uncomfortable but, despite the lack of drugs, I do not detect any tension around his mouth or eyes; I do not think he is in pain.

He can sip from a straw, but he can’t hold even a small milk carton. He “pouches” his blended food along his gum line versus fully swallowing it, causing gum disease and tooth decay.

A few months ago I was devastated to learn that — to prevent other health issues — all his teeth must be extracted.

The DVH has a specially equipped bus, a staff member who makes medical appointments and provides a traveling aide. We are blessed to have such a wonderful facility here in Delaware. The staff at the DVH is like my family now. I’d be lost without them.

So when I walked into the exam room the day the dentist told me this news, Don was already undergoing routine cleaning of his teeth. A tear was rolling from his left eye.

I had to call upon all my own military bearing to keep from breaking down in the dental clinic. Closing my eyes at night, I see that tear and add a few of my own to my pillow.

Why Don’s tear? Had he been frightened by the noise and vibration in his mouth? Is it even more uncomfortable since Don is wheelchair-bound, his head facing sideways and down? Could he have comprehended and been panicked by the thought of extractions? Or was it merely a result of his sinuses being stimulated by the exam?

I abruptly ended his appointment based on that tear. I asked for a referral to a specialist where Don had been sedated for the dental procedures in the past. I thought Don looked grateful, but I cannot know.

This U.S. Army photo is of Lt. Col. Don Jagger in 1993 when he attended the U.S. Army War College in Carlisle, Pennsylvania.

Due to the current situation, Don’s orthodontist said he can only extract that many teeth in a hospital under anesthesia. A round of appointments with his pulmonologist and his cardiologist determined that Don can no longer be safely anesthetized or sedated.

We are back to our regular dentist pulling a tooth at a time, with Don slumped over in his wheelchair, mouth tucked into his shoulder.

A regular dentist office is not equipped to handle people like Don. Despite the fact that our dentist is gentle, kind, talented and knowledgeable of all the latest modern dental techniques and has my complete trust, I am racked with guilt.

I have nightmares that my husband, a Ranger trained by the U.S. Army to withstand torture, has become Dustin Hoffman in “The Marathon Man,” without the requisite comprehension to answer the dentist’s repeated question, “Is it safe?” I am his mind reader who thinks she hears his silent screams, “Yes! Yes! It is safe! Don’t hurt me anymore!”

As it turns out, these types of oral hygiene issues are common in those with dementia. They cannot be ignored because problems in the gum are associated with problems elsewhere in the body.

For this reason, the Delaware Veterans Commission made one of their top recommendations to our General Assembly that a small dental clinic be established in the DVH. Our state committed $1.5 million of public funding to the project but $500,000 more is needed.

This year, for Don’s 72nd birthday and our 43rd anniversary, I am writing to do more than make you aware of FTD.

You can support research by the Association for Frontotemporal Degeneration by visiting https://www.theaftd.org/support-aftds-mission/

As an individual, business owner or corporate executive you can contact the Delaware Veterans Commissioners at https://veteransaffairs.delaware.gov/commissioners/ to help make up the $500,000 shortfall in public funding with private donations.

Eugenia Thornton is a resident of Frederica.

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