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The Double Whammy

double whammyI find an Oral Surgeon who can address and treat the “growth or abscess” in my Dad’s mouth that is causing the garbled speech. All Oral Surgeons are not the same, some focus on extracting molars, while other’s might focus on treating sores and doing minor oral surgery. I sense I need to find one who can remove the growth or treat the abscess on my Dad’s tongue and land an appointment with a recommended specialist within one day. Phew!

When we arrive, my Dad grabs the medical forms and starts to fill them out. He asks me about the date, but whizzes through the form in his unique, very legible hand-writing. I volunteer to take the forms up to the front desk and make sure that I will get the bills and review the forms before I hand them over. I want to make sure they know my Dad has dementia, but don’t want to have to say this in front of him. I told them on the call, but this got lost between my call this morning and our appointment I’m afraid.

When they check us in, the nurse turns to my Dad to ask him a few questions and he responds “I’m just the driver.” I turn to my Dad and tell him that we are here to see how to make his tongue feel better. “Oh! Good,” he responds.

We end up sitting in the waiting room for more than an hour. My Dad is reading TIME and turns to me as he’s looking at an Alzheimer’s Association Ad and asks me “Do you know anyone personally, who has Alzheimer’s?” The neurologist believes my Dad has Alzheimer’s based on his medical and psychological tests. I found that being the “truth-teller” to help my parents see their limitations only made me a person my parent’s trusted less. I’m surprised how quickly I respond that “it’s difficult for Doctor’s to really know for sure until the autopsy” and quickly transition to a story about my Son and our adventures as he is learning to drive. I can’t believe how easy it was for me to avoid the topic and re-frame the conversation. Practice makes better (not so perfect in my case.) Whammy #1 landed.

We are called into a treatment room and wait another half-hour before seeing our doctor. By the time we finally see the doctor, he spends less than two minutes looking in my Dad’s mouth and feeling his jaw line.  His gloves are off and he tells us that my Dad has a “Squamous Cell Carcinoma” that has wrapped around my Dad’s tongue and he is going to refer us to a large oral tumor specialist. Whammy #2 delivered.

WAIT! I ask is there is anything the doctor can do to make my Dad more comfortable? He can’t really move his tongue and is now mentioning that it hurts. We get an oral numbing rinse and the referral to an ENT cancer specialist and are sent on our way with the order for a CT Scan and prescription. Whammed. 

Tips for visiting the Doctor:

  1. Call in advance and let them know that the patient has dementia.  
  2. Download and fill the forms out in advance.

7 comments on “The Double Whammy

  1. That sounds like a great idea to fill the forms in advance if they have them posted online! Good luck with all these appointments. It sounds very stressful.

  2. Are your parents seeing a dentist regularly? Seems like that cancer should have been caught in a routine dentist exam. My dentist looks for plaques and cancers on the soft tissue at every exam.

    My mom is 80, just decided to move 1,200 miles away from family to a senior apartment building. I don’t know how I’m going to know when or if she is unable to be alone. Can’t afford to visit up there.

    • My parents were seeing a dentist regularly, but for the past two years I have no idea (and they will say yes, but don’t really know). We found some appt cards in my Dad’s desk from 2011 and guess that is the last time they went for a cleaning. We requested an appt and it’s taken more than 6 months to schedule now that they are in Asst Living. I have A LOT more to say on this, but am still trying to understand it all. I had two doctors and a Speech Pathologist check out his mouth and the two Doctors found nothing (I even sat through the first exam). Things didn’t really progress until the Speech Pathologist noted that my Dad really can’t move his tongue which is causing him to slur. It’s tough — the communities will manage CRITICAL CARE, but won’t be able to watch for early warning signs to treat some simple issues. Sadly, I was in my Dad’s life and spent 3 months trying to get anyone to figure out what was going on. Might have been the same outcome had I not been involved. It’s hard.

  3. At least you have an initial diagnosis now, though I know it’s frustrating navigating the “hurry up and wait” healthcare system. Hope your father gets some relief soon.

  4. […] He only once mentioned the word Alzheimer’s to me, it was in the final month of his life. As we were in the waiting room to see the first oral surgeon about the lesion on his tongue — he pointed to an advertisement in the magazine and asked me if I knew anyone with Alzheimer’s. […]

  5. […] I still smile when I think of the number of times we would show up at an appointment and when asked by the nurse, my Dad would respond “I’m just the driver” and point to me. […]

  6. […] passed away. While he had Alzheimer’s, he died from a tumor on the back of his tongue. It was a harrowing experience, but I knew it was a blessing that the cancer seemed to take him so swiftly. I miss him, but I […]

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