12 Comments

Are You Ready for the Icky Discussion?

heartbreakWhen my parents were going through the cognitive testing more than a year and a half ago, we would sit through hours of discussions with doctors who were telling my parent’s they had dementia. My mom would argue and my Dad would sit quietly.  I realized that not only were my parent’s not retaining this information, but each new time the discussion began, it was as if they were learning it for the first time.

The results of the CT Scan reported Squamous Cell Carcinoma. I hoped to minimize the amount of times my Dad was going to have to hear that he had cancer. I called ahead and asked the doctor if she would speak to me after my father’s appointment alone. They call me back and tell me they will not do this. I understand why the doctor insists on this – but don’t like it.

I asked that they make sure the staff knew my Dad had dementia since the first visit is usually from a nurse who does the first screening and asks questions about medications, past surgeries and current conditions. To each question, my Dad just replies “No.” I follow-up by telling her that all the current medical information in the chart is correct. My Dad looks at me and is annoyed that I didn’t back him up on his answers.

When the doctor enters, her first question to my Dad is why were you not seeing a dentist regularly? My Dad replies that “My teeth are straight so why would I see a dentist?” I share with her the history of the last few months and tell her that no less than six weeks ago a doctor had her hands in his mouth trying to investigate my report of slurred speech.  When the doctor starts to check out my Dad, even the touch of the tongue depressor is painful. She let’s us know she will need to do a biopsy and an endoscopy and it will be very uncomfortable.

My Dad sits through the tests, stoically. After the doctor finishes the review, she asks “Are you ready for the icky discussion?”

The doctor tells us that Dad has invasive cancer in his mouth and it’s tethered his tongue. The biopsy will tell us more, but given his age and low weight, treating this cancer will be difficult. We might be able to do radiation and chemotherapy, but most likely he will need a tracheotomy and feeding tube and the oncologist might not even think he is a candidate for either option.

I ask her for her recommendation on how to get my Dad comfortable. She refers us to an oncologist for palliative care to find out how we might get my Dad more comfortable. Heart-Broken. 

12 comments on “Are You Ready for the Icky Discussion?

  1. holding you and your Dad in my heart

  2. I’m so sorry that your family is facing such a grim diagnosis. I hope they can find a way to make your dad comfortable.

  3. Hi Kay,

    My thoughts are with you. Caring for my mother when she had cancer was the most difficult and rewarding thing I have ever done. It was in her brain so it had dementia-like cognitive effects. Fortunately with brain cancer there isn’t any pain.
    My heart breaks with you.

  4. Holding your heart gently Kay, and sending love to you and your family, and especially your Dad and mum. It would have been easier, I suspect, if it had been a symptom of dementia… With love, hugs and blessings, Kate

  5. Sorry, Kay,
    This is not the best of times, for sure.
    They told us last week after a CAT scan that my mom has lung, liver, and bone cancer (the exact diagnosis my dad had a year ago-he lived 3 weeks) she had a scan about a month ago that showed nothing-so it’s happening fast. The difference is, that while my mom is mildly impaired dementia-wise, she is able to understand and participate in her care. My dad was so confused and withdrawn, we didn’t know he was so sick and in such pain until it was really very late. He definitely didn’t get the palliative care he should have, now that I see how aggressively they’re treating my mother’s pain.
    So advocating strongly for your father with the palliative care people will make a huge difference.
    My mom, who is a squeaky wheel and can be really cranky, is getting much better care than my dad did. It’s something I wish we’d known for Dad.

    • I’m so sorry to hear of your double (or should I say quadruple) losses. I’m still trying to understand and recognize that my Dad may not be able to communicate his pain. We are now moving in the right direction and I’m so lucky to have siblings that are willing and able to share the load. My thoughts go out to you as you face your challenges. Aging ain’t for sissies.

  6. […] I had the “icky discussion” with the doctor, I take my Dad home and I tell him we will do all we can to help him feel […]

  7. […] While he suffered from dementia, the time that a doctor first found a lesion on his tongue, to a diagnosis and his death was 4 […]

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