I had a span of four days two months ago when I went to the E.R. three times—twice for my mother and once for my husband. Going to the E.R. is never fun. Even if you have all your faculties it can bring out negative reactions and behaviors. Being in pain may cause one to really despise the wise-cracking nurse who otherwise would be fun to be around. The unpleasantness of being in that cold and stark environment, being left waiting for hours, and wondering what the heck is wrong with you just doesn’t make for a pleasant time.
When one is in the E.R. and has dementia, it is a bit different for both the patient and for the caregiver.
E.R. Staff Will Drive You Mad
Intake staff will persist in directing their questions to the patient. As the person accompanying a loved one with dementia, it gets really old having every single person ask “When is your birthday?” “Where were you born?” “What is your height?” Mom just looked at me mystified and concerned. I had to keep explaining that she doesn’t know that stuff on any day. It in no way reflected effects of the “seizure” which sent us to the E.R.
You might think, why didn’t you explain about the dementia. I did, but it didn’t change anything. I even came armed with a list of her diagnoses and of all her medications. The intake people took it, and it was never seen again. It did not travel with her to her cubicle in the E.R. or upstairs when she was eventually admitted to the hospital. None of the information was put in her chart or on the computer. I was left doing the best I could from memory. So annoying when you feel you really came prepared and organized. My advice is carry 3-4 copies, not just one.
The E.R. Is Not Dementia-Friendly
Once we navigated the intake questions and were finally seen by a doctor, the tests began. The lab work went okay, but the x-ray experience was special as in not-in-a-good-way special. Mom needed an x-ray of her heart. According to the technician, the doctors don’t want the patient to lie down while the x-ray is taken. The technician and I did our best to make this easy for Mom. However, since she is little, her wheelchair was too small to accommodate placing the plate behind her. The technician decided Mom would simply get out of her wheelchair and sit on a stool in spite of my expressed opinion that this was going to be difficult. Yep. Even once we managed the transfer, Mom kept listing to port, in danger of falling off. Mom gets really scared if she thinks she is going to fall. Sitting on something with no back and no sides was very scary for her. I was saddled with one of those heavy protective aprons as I tried hard to hold her up straight enough to get a good picture. We really needed a third person to help us with her. It was ridiculous. It took forever. Tell the damn doctors we can’t safely do it.
The IV was a disaster. Mom had been moving her hands almost constantly during her waking moments for several months as part of her agitation. Was she going to leave this thing alone that she could feel in her arm? No. I first discovered she had knocked it out when the monitor quit showing her pulse. As I was trying to put the little device back on her finger, I lifted her blanket, and noticed her gown was bloody. I called the nurse who ignored my efforts to tell her Mom couldn’t help it and lectured Mom on not touching the IV area. Oh, and also please leave your arm extended so that the blood pressure cuff works properly, thank you very much. The nurse decided that maybe the IV needed to be better wrapped to protect it and Mom. You think? Mom pulled it out a second time. No blood this time, just the IV spilling out and soaking her. Another change of gown. This time a different nurse came and had the sense to put it in her hand which at least made it easier for me to see what Mom was doing. I just held her hands. We eventually gave up on the pulse device altogether. It was no sooner put back on Mom’s finger than she had it off again.
When the doctors finally decided to admit Mom during our second trip to the E.R., there was more fun. Again the repeated useless questions, the repeated physical tests for stroke. At one point, after we had been there about six hours already, the admissions doctor came to see Mom and put her through her paces again. When he asked her to raise her arms, she started waving her arms around with delicate hand gestures and a childish look on her face. I looked down at her and said sternly, “This is not ballet class.” I know, it was mean, but I’d been up all night the night before with my husband. I was ready to drop, and those metal chairs are not comfortable. I actually climbed up on the foot of her bed at one point to lie down for a while.
Escaping the E.R.
I didn’t need a doctor or an x-ray or an MRI to tell me. I knew Mom had suffered a stroke. So many of the signs were there—the typical one side weaker than the other, the change in her vocabulary (The stethoscope was “icky,” “felt all messy” rather than cold.), decreased comprehension, the above-mentioned childish behavior, and the clincher–the fact that she never complained during the entire seven and a half hours we were there, never asked when we were going home, never muttered under her breath. That was definitely atypical. Mom just stared up at the ceiling. She was delighted to get into the hospital inpatient room with warm blankets. I had to answer all the same questions all over again, but got out of there by 11:40 and was home shortly after midnight.
And that was the beginning of the seven-day hospital stay. More about that experience and how to advocate for someone who cannot speak for themselves later.
For other posts that also deal with loved ones in the hospital, click here for Irrational Desires and Hospital Nightmares; click here for Dealing with Delusions and Memory Loss; click here for Inconsistent Memory vs. Nightly Rituals; and click here for Meeting Financial Challenges