Tag Archives: hospitals

Dementia and the E.R.

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.

Tiny Dancer

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

Irrational Desires and Hospital Nightmares

After a night in the hospital not sleeping due to Mom’s delusions, hallucinations, and attempts to get out of bed, I am trying to adjust my expectations of life.

Expectations

It interesting the things that we decide we want out of our lives when we are children or in early adulthood. During that time in my own life, I decided I wanted one of my parents to die a natural death. My father hadn’t, so that left my mom.

Although dementia is a natural disease, the way my mother got it was not via the usual normal slow progression.  Instead, it was the result of an event—an accident, which was not my mother’s fault.  However, it constituted a medical event that catapulted her into dementia. One week she was bright, witty, and articulate except for the occasional search for a word (the same way I struggle at 27 years younger than she). The next week, she was in the hospital after almost dying and not herself any more. Her accident caused an acute stage of rhabdomyolysis (muscle breakdown). Her creatine kinase levels were 4,000 times what is normal. Mom was therefore in a cardiac ward.

Hallucinations, Delusions, and Confusion  

When I stayed overnight with her in the hospital, she was hallucinating that there were cats playing by the foot of her bed. She also had delusions.  One was that the tv was a window through which people watched her.  Another was that the hospital hallway was a place she regularly walked down to listen to people singing in a choir.

Mom was confused and didn’t know me.  She thought I was a stranger, her mother, my sister. Mom asked if I had children, how the weather was where I came from. She was very polite as she clearly attempted to make conversation with a new acquaintance who just happened to be her daughter. Then she started calling me “Mom.”

A Sliver of Logic

Mom asked if her kidneys were okay. She remembered that her doctor had had her go to a class related to kidney problems. Mom was worried, and I thought somewhat logical in suspecting that was why she was in the hospital. She wanted to know truthfully, did she have what her mother had — cancer of the kidneys.

Paranoia  

Mom was paranoid.  The staff got her out of her bed and into a chair for dinner while they remade her bed.  Mom thought that the chair would tilt and drop her down a chute to the basement where people would murder her. She clung to me and begged me not to leave her there.

Loss of Basic Skills

Mom couldn’t feed herself, so I tried to feed her something. She had been days without food or liquids. She kept doing weird things with the food and the utensils. Even eating with her fingers didn’t work. Mom just didn’t understand what she was doing, and her hand-eye coordination didn’t work at all.

Hospital Nightmare

The night was an eternity. Mom had been through a horrible ordeal and was up until about 3:00 a.m. the night before after the EMTs brought her to the hospital. I thought that surely Mom would sleep fairly well. At 8:00 she did fall asleep, and I darted downstairs to get something to eat for dinner. I hadn’t eaten since breakfast. The cafeteria was closed. I got something out of a vending machine. I can’t remember what. I was back up at 8:10 to find Mom with her legs dangling over the side of the bed, her gown around her waist. “Help me. Help me,” she whimpered.  She had tried to get up.  She simply could not remember that she could not stand.

From then on, we were caught in a cycle.

Step One

Mom frequently wanted to go to the bathroom. It was difficult even with help from staff to get her up and to the commode. She couldn’t stand on her own. Mom clutched me, whispering desperately, “Don’t leave me with these people.”

The staff was bitchy and annoyed with her for thinking she needed to go to the bathroom so often. They made comments to each other as if she wasn’t there, as if her feelings didn’t matter. “Oh, she just thinks she has to go.”  They were not happy when we finally got her onto the commode only to find she really didn’t need to go.

Their faces revealed their annoyance, as well. I wanted to slap them.  After over two days of being on the floor, lying in her own urine and feces, it didn’t seem odd to me that Mom wanted so much to get to a toilet of any kind.  I wanted to yell at them to have some compassion or to at least consider that this was part of their job.

Step Two

The next step in the cycle was Mom eventually falling asleep again. But never for long.

Step Three

Then, five or ten minutes later, I could see her legs start to kick the blanket off, and Mom would try to get out of bed.  I had to watch her continually so as to stop her.

And Repeat

Then Mom would ask to go to the bathroom again. Back to Step One.

Finally around 10:00 pm, I begged the hospital staff to watch her so that I could at least go to the bathroom. (Wanting to pee is a family trait, I guess.)

This cycle went on and on. In spite of her ordeal, Mom never slept for more than five or ten minutes at a time that night. There was no sleep for me. Around 5:00 a.m. she actually slept for 45 minutes straight, but I couldn’t relax enough to do the same. Of course, I kept waiting to see her legs start to kick the blanket off again.  I was in the same clothes for 34 hours before I could finally shower and change that evening. I’m too old for an all-nighter, especially one so stressful.

It was a nightmare, but a nightmare for both of us. I cannot convey how distressing it was. As I said, Mom had no cognitive concerns pre-injury, and now she was completely . . . out of her mind?

Expectations Unmet  

So, what I’m getting to is this: My mother was robbed. There was a mugging, and Mom was robbed of herself. I feel robbed.  I just didn’t think it was too much to ask that one of my parents die a natural death. But I guess it was. I can’t believe how disappointed I am. It’s as if I somehow expected the wish I made over 40 years ago would just have to come true. I’m trying to get over this feeling of self-pity and betrayal.

I had no right to expect I’d get what I wanted. Living in America, I am privileged. My country is not ravaged by civil war or by out-of-control disease and poverty. If I stay out of a gang, take certain precautions about where and when I’m out and about, don’t drive under the influence, drive defensively, and don’t carry toy pistols in my pocket, I have a degree of expectation that I will be safe. How did this happen?

It was an accident, and accidents happen. I know this, and yet I’m feeling so sad and betrayed. I think I was stupidly naive to want what I wanted.

For just a few of related posts from this blog, click here for “Dealing with Delusions and Memory Loss,” click here for “Inconsistent Memory vs Nightly Rituals,” and click here for “Meeting Financial Challenges, especially the section entitled “The Trip.”