So you have your legal paperwork in order, power of attorney, health care directive – should be smooth sailing, right? No, just when I thought I had a grip, surprises were just around the corner. Below are situations I ran into with my Dad shortly after his dementia diagnosis.
Dad wanted a couple of stations added to his cable TV roundup. I stopped at the house and told him I would call the cable company, and they may need to talk to him to confirm I could change his account. He agreed.
“Hello, I’d like to make some changes to my dad’s cable TV account.”
“Is this Lee Eggerud?”
“No, this is his daughter.”
“I can only speak to Lee because the account is in his name.”
“Okay, I will put him on, and he will let you know it’s okay to talk to me.”
I put dad on the phone.
“Yes, Lee, is it okay if your daughter speaks for you on your cable TV plan?”
Dad: “No, don’t listen to her! Don’t do anything she says!”
Sigh. Eye roll. From there on we rehearsed what we would say on the phone.
University Eye Doctor
My dad insisted on getting another opinion on his glaucoma, so his eye doctor sent him to the local university physicians. I thought, what could go wrong with this visit? I naively assumed the original eye doctor had forwarded all the medical records.
I dropped him off, went back to work, and picked him up an hour later.
Dad says, “That doctor says there’s something wrong with me.” A week later a letter arrived. Here is part of it:
“Thank you for asking me to see Lee in Neuro-ophthalmic consultation. Unfortunately, he is a very, very poor historian…[it went on to state the confusion on Dad’s part, and listed pictures of people he could not recognize.] …He is able to recognize the president and a picture of Superman.”
It went on to say he should have an MRI to obtain a diagnosis.
Clearly, I should have been at the doctor appointment. I called the physician’s office at the University to let them know he already had an MRI, and we knew the diagnosis. This was shortly after the HIPAA privacy regulations went into place.
“I have information regarding Lee Eggerud I need to let you know.”
“I can’t tell you anything,” the young man on the phone told me.
“That’s okay,” I said, “I can tell you information.”
“I don’t think so,” he insisted.
“Yes, I can, and here is the situation. He has dementia, it has been diagnosed…”.
(I had written about privacy regulations in graduate school, so I had a good idea of what was allowed.)
There are a couple of points I’d like to emphasize:
- If possible, have someone attend medical appointments with your loved one to provide information and take notes.
- Medical information does not freely move between physician groups.
- Even if you are named on a Healthcare Directive, most medical offices have their own permission forms to be completed.
- Medical records do not transfer themselves, and even if you ask them to be transferred they may not reach the correct place. You must follow-up to make certain they reach the proper location.
- Even if you have all you proper paperwork in place, surprises will await you.
While we struggled to deal with our dad’s dementia, we received some very bad news about our mom.