“SIGH”, she says as she steps up on her soapbox once again.
While trying to maintain a positive attitude that people are waking up to the unacceptable state of elder care in our country, yesterday I was so disappointed in our disjointed, fragmented healthcare system.
I received a call from a memory care community where one of my clients lives. She was found by staff in tears in the dining room before lunch yesterday. She reported significant pain in her left ear. The on-duty manager made a good decision to send her to a nearby urgent care rather than send her to the hospital Emergency Department. I agreed to meet my client at the urgent care.
The facility employee that took my client to the urgent care delivered all the required paperwork to the front desk receptionist.
The nurse that took us to an exam room asked my client several questions including her height. When my client said she didn’t know her height the nurse asked her to remove her shoes and she would measure her. I interrupted and said “no, we won’t be removing shoes. She is about 5’10”. The nurse agreed and directed us to a room. She had no paperwork in hand – only a laptop. She asked several questions then promised the doctor would come in soon.
The doctor entered the room holding a pen and a sheet of paper. Because my client is unaware that she has dementia, and because she reacts very angrily when anyone uses that word to describe her, a dialogue with any healthcare provider about her cognitive impairment is always awkward. The doctor and my client had a testy question and answer session about her ear pain. As I helped my 80 year old client up to the exam table, behind her back I mouthed the word dementia to the doctor. She looked completely surprised, thereby confirming for me that my client’s paperwork delivered by her facility caregiver never made it beyond the office reception desk.
The doctor poked and prodded in my client’s ear until that pivotal moment when my client said, “If you don’t stop I will slap you”. And she meant it. I repeated to the doctor. “Stop. Now. She means it.”
The doctor asked my client to rate her pain on a 1-10 scale (my client said she didn’t know how to answer that question…it just hurts). The doctor ran through a list of possible diagnoses, now speaking to me instead of my client – as though my client had suddenly become invisible. She could prescribe this or that or another drug…all with scary side effects. In the end, she prescribed ibuprofen – Advil – 400 mg every 6-8 hours, along with a soft diet for a few days.
As the doctor turned to leave I explained that my client lives in a retirement community. This means that all medical orders must be written on a specific form that was delivered to the office along with my client. Then the doctor and I verbally sparred. Yes, an order is necessary to change her diet from regular to soft. Yes, an over the counter medication must be ordered in writing. I explained that I could not purchase ibuprofen and hand it to the nurse at the facility because of state regulations. I further explained that it would take at least 12 hours for the doctor’s orders to be reviewed by her facility, faxed to the pharmacy, packaged by the pharmacy and delivered to the facility. Long story short, it would be another 12-18 hours before my client would receive pain relief.
I asked the doctor if she could give my client two Advil there at the urgent care. “Oh no, absolutely not, we don’t have Advil, no, no, no.”
She left the room in search of my client’s paperwork. New orders (on the proper form) in hand I drove my client back to her facility, delivered paperwork to the nurse, confirmed that my client had no ibuprofen on-hand, listened to the med-tech explain that I could not give my client medication and read between her lines that that is exactly what I should do. I went to the nearest convenience store, purchased Advil, checked the dosage and strength orders and returned to my client. In a quiet corner away from caregivers and residents, I gave my client the pain reliever she had needed all day. I promised her I would be back this morning to check on her, to bring soup and give her another dose of ibuprofen. This dear lady burst into tears, held my hand, and thanked me for helping her.
My soapbox speech: what is so broken in our healthcare system that one of our most vulnerable populations, our elders living with dementia, must suffer endlessly while state and federal regulations leave the rest of us hamstrung and desperate?
I understand that medical protocols are necessary and are meant to protect patients from dangerous prescription side effects, drug interactions, and abuse. Sometimes the things I see in facilities make me wish for more stringent government regulations to protect our seniors from harm or neglect.
My point, buried in this long narrative, is that if you have a loved one living with dementia, living in an assisted living facility, you must be poised to act as your loved one’s health advocate. Ask questions, question authority, bend the rules, be relentless, be her eyes, his ears and their voices.