8 Comments

The Reminder to Be a Hyper-Vigilant Medical Advocate When Dementia is Diagonsed

alertThe midnight visit to the ER was long and difficult. I wondered how mom would have managed by herself in a new place alone. Her community put her in the ambulance and gave the EMTs her papers and off she went. I wonder how she would have gotten back had I not shown up. While there, I spent most of the time trying to help get her comfortable and it resulted in only some short cat-naps as we waited for the doctor, the CT scan, the report, and the discharge papers.

There was no bleeding found, but they confirmed that her ear-infection is long-lived since they found fluid behind her ear in the scan. Just last Tuesday, I watched as the doctor checked both ears after I asked about her constantly running nose. He found nothing. Tonight, the doctor immediately tells me on his first look that he can’t even see down her ear canal because it’s so swollen.

My stomach immediately tightens as I recall watching a doctor stick her hands in my dad’s mouth and pull on his tongue when I was trying to find out why he was slurring. She found nothing and within a few weeks he got diagnosed with a tumor on the back of his tongue. He wasn’t diagnosed until after his appointment with a speech pathologist.

I’ve had many discussions with a variety of my mom’s medical team. I’m always told she doesn’t exhibit the tell-tale signs of pain. Most recently, I’ve been following up on her constant foot movement. Both of my parents have proven to me that they will either cloak pain or don’t register it. It makes the job of being the medical advocate so much harder. I’ve been told by a variety of different doctor’s, nurse’s and social workers that the family usually notices issues well before it might be recognized by the medical team. I will continue to use what I know of my mom and ask about those things I see that don’t seem right. It’s all I can do. Advocated. 

8 comments on “The Reminder to Be a Hyper-Vigilant Medical Advocate When Dementia is Diagonsed

  1. Good advice, persistence is key.

  2. Dear Kay,
    Thank goodness you were with your mum… many of our patients with dementia who end up in the ER in this country go downhill very quickly, and carers are not always allowed to be there to advocate for them.
    Your advocacy, and yes, persistence, is admirable.
    Best wishes always,
    Kate x

  3. Reading this reminded me all over again of the times we sat with dad in A&E or the admissions ward wondering what happens to people who have no family to advocate for them. Vigilance, persistence and a thick skin are required.

  4. “I’ve been told by a variety of different doctors, nurses and social workers that the family usually notices issues well before it might be recognized by the medical team.”

    Yep. Sometimes the medical team doesn’t pay any attention whatsoever to the people who really know… As you may have guessed, my level of respect for so-called “experts” is ummmmm lacking to say the least….

    Keep advocating! And bravo.

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