Casper used to be the consummate morning person. I hated that. She could be up at 5am making coffee, ironing clothes, getting stuff together for the day. Sleeping past 5:30 am was a Cardinal sin, and she was not religious. PD has taken it's toll, and now she can't wake before about 9am on a good day. I wake her several times to orient her, and maybe half the time it sticks. Half the time she wakes and has no idea what day or even year it is, much less where I am, which is usually at work halfway across the county.
So today we had to be at Loma Linda University Medical Center at 0720 am. To Casper that would be like waking her while the Easter Bunny is still on late rounds from yesterday. Because she was afraid she would forget, she kept herself up all night. Did I mention PD causes anxiety? Such fun this stuff. If you are a PD family, you know what I mean.
At 0650 Casper was in the car, waiting for me. "Hurry up. We will be late!" My hair is not dry, and I am dressing on the way down the stairs. Not a good idea at my age. Even less a good idea with the dogs and cats barreling down with me. When I am in the car and we are moving, she is not sure she wants to do the treatment we are headed for. I bite my tongue. She's in pain and dry mouthed from being NPO at midnight. I pray she won't refuse when we arrive. It took and act of God and the goddess and lots of promises of Sees Chocolate to get this set up.
That's when the fun starts. Because if I have had to have every medical record faxed, we have already had a four hour appointment with the provider to do history, and I have faxed a summary, why would I possibly expect them to know Casper's history when we arrive? That would be so, I don't know, logical?
So we wait. And wait. Until 8:30am. Really? Why? "We never know the schedule." Then we are taken to the back. To a teeny room. Where we are told Casper has to stay without me. "But I want her here." Casper takes my hand. In public! "That's not our policy. Patient privacy." There are five other patients in a 10 by 20 room. Spouses cannot hear the information, but the other patients sure can. "You go outside. We will call if she needs you."
They want to do history. They have no idea she has memory loss. I go where I am directed. I mention casually to the receptionist that they are having my spouse sign consents that I have in my possession. That's a cool idea. And that she can't provide history. But that's fine too. She looks more confused than Casper. Two minutes later "You can go back now."
I do get the privacy things. Really I do. And the coolest part is that the surgical center has a private consultation room off the main lobby. But we are not offered that. Back to the teeny overcrowded room. Casper is holding consents. She cannot tell if she has even signed them properly. Absolutely nobody has asked her if she can even see them. In my practice that is the first thing I ask as I present privacy acts and such. Not one person has asked. This is a teaching hospital? "Can you look at these? Are they right?" Her signature is now shaky, not the strong KCasper of before. I miss that strong nurse's hand. I really do.
They take us to a desk by the door. There is no privacy. there is commotion everywhere. Casper looks dazed. My ADHD kids could never cope with this set-up. What are they thinking? The nurse points to a computer screen with tiny font, listing dozens of diseases. "Does anyone in your family have these?" Casper cannot see the screen. I know it. But folks with dementia are so adept at covering losses they will never reveal a weak spot. I watch. No answer. She looks at me. My turn. I answer. The nurse gets irritated. "I asked her." Yes, you did. But you didn't ask if she could see the stupid screen, did you? There is a patient maybe five feet away. the door is opening and closing behind Casper. A nurse is on the phone. The stapler is in use over Casper's shoulder. Way cool set up. Did I mention she has PD and dementia? And that you have all of her records? I am suddenly glad I took my blood pressure meds.
We get through that nonsense. It clearly does not really matter, because as I watch the nurse record the info I see it is at least 50% wrong. The best part is when she asks about substance abuse, and I give her the information. Remember, they are all about privacy: "Her mama drank?" at 100 decibels. I am contemplating how to make a rolling chair roll through the door with the nurse still occupying it. She starts the Mini Mental Status Exam. And she does it badly. I do these for a living. She does it with phones, and staplers, and doors, and patients nearby. Casper does okay until we get to the county where we were. She's stumped. "You don't know what county you are in?" May I just say that is NOT in the correct responses for that exam? Can you imagine being talked to that way in a crowded room before a medical procedure? I pray Casper does not walk out. I could not blame her if she did.
Then I am told to leave again, before it is done. I was okay, and now HIPPA is in the way. I am not believing it. I am promised they will come get me as soon as Casper is in a bed. It's now more than 2 hours later, and she is still being processed in. We can sign a patient on to hospice faster than this nonsense.
So I sit. I remember the look on Casper's face as I leave. She was afraid. And I sit. And I ask the receptionist, who is chatting with the fish tank people and other staff, and then disappears. Finally I text, and Casper responds asking where i was- the staff said they called and spoke to the receptionist. I am a storm trooper. I head to the back, and ask the staff who they called. "The receptionist..." Really- she's not there. She's in the back, chatting. They gulp. They talked to her, they left a message, they...
I don't care. I made my point. I sit with Casper, and the anesthesiologist appears almost immediately. I am glad I showed up without an invitation. He has NO records. None. I fill him in. He has no idea she has memory loss or PD or has had strokes. This could have gone badly. He runs off to check the computer, and to read her records. They take her in. They promise to come find me.
Thirty minutes later I go find her. I am told I am too early. They will call. But again, no receptionist. Peachy. Five minutes later"Go get your car. They will take you back and fill you in."
I park in the loading zone, and I am handed a discharge sheet. they have, of course, reviewed it with someone who has just come out of general anesthesia, and have no time for me. The return appointment? "We will call you."
I get Casper her long overdue meds. She rests. Then half way home "Why didn't I know what county it was?" Memory loss be damned- she remembers judgmental comments and the hurt it causes to her psyche. And I thank my lucky stars that I am already half way home...
The lesson?
If you are treating a patient with memory loss or dementia:
- They need preparation.
- They need clear instructions.
- The instructions need to match the reality: we were told I would stay with her and be an integral part of the process until she was taken to the treatment room. The reality was I was not welcome and Casper was unprepared for being alone in a strange place.
- Minimal wait times work better
- Patients need help with history without being made to feel they are being helped
- Family or support need to be next to the patient, especially when awaiting a stressful moment or after anesthesia for reorientation.
- If you are going to ask personal questions, a private room is indicated.
- Noting loudly that someone cannot recall something is a no-no. Always.
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