More adventures of a caregiver, who thought she was really just a wife:11/5/12

On our newest adventure to hospital land, we arrived early and found a delightful clerk in registration who remembered us (that means you have been there too often!) and didn’t miss a beat when she recognized us as a “we” and Casper as not being able to remember at least some information. Bonus points! Maybe today would be okay after all, I thought. Not great, when facing a spinal tap, but ok enough.

The nurse found us quickly and was great- no asking if I was Casper’s daughter (really- we are not that far apart, and with all of the drama I am catching up quickly!). She had already read the history- more points!- and knew what she was dealing with. She took us to get her changed, and simply assumed I would be there to help, stepping away for privacy. Wow, I thought, this is getting to be almost too good to be true. As she settled Casper into a bed she acknowledged the legal documents, and noted that I would be signing for her. Wow- not a single challenge. This is going to be easy…

And then…

“Let’s go over her history and symptoms.” Umm, let’s not. I have it all in writing. Meds too. I’m OCD like that. No discussion needed. Really. Bedside, with me on one side of the bed, and the nurse on the other, for forty five minutes. “How much memory loss? Short term or long term?” “Both? Oh, that’s bad.” (I know it, thanks. Casper didn’t. Until today.) “What is her diagnosis?” I have no idea. Neither does the doctor. That’s why we are here. “Have you considered things like (fill in your best guess.)” Yep. Been there. Done that. “What can she do?” Umm, step back or you might find out. She’s still got ears and she’s hearing this entire conversation. “Why does she have pain?” You try tremoring 24/7 and falling and tell me how comfy you might be. “I have to list her as nutritionally deficient with the rapid weight loss. You should try to feed her Ensure.” Have you ever tried Ensure? Did you hear me say she can’t always swallow? That would be a choking hazard. But thanks. “Honey, I have to put a Fall Risk band on you. Don’t get up. The rails will be up too.” Move quick- she’s still a nurse, and she has an opinion about being trapped anywhere. And she is definitely not "Honey."

None of the above is to say the questions didn’t have to be asked, or that the fall risk wasn’t real. I totally get that. But Casper is a person, like all patients, and having those conversations over her head like she’s not there is dehumanizing. After it was over, I leaned down and asked quietly how she was doing. There were tears in her eyes. She said she was ok. I apologized, and she said the answers were right. I asked if it hurt to hear them, All she could do was nod. We held hands for a while, and I stroked her head. She usually hates that kind of thing, and public displays of affection are not in her book. North Carolina beat that out of her. Today she needed it the whole time, and when my hand left hers she looked for me.

Then after a huge delay the radiology tech came for us. He didn’t introduce himself, or warn Casper that the bed was going to move. He didn’t ask who I was at that point. When we got to our destination (another holding bin for gurneys with patients who were people before they entered the hospital) he looked at me and said “Are you her caregiver?” How to answer that? “No, I’m her wife. And I’m staying with her.” He looked at me. “We’ll see about that.” Oh, you betcha we will. He shoved her bed into a wall, so Casper was facing a phone, without another word. No explanation of what was coming, no orienting to where we were. By now her meds had worn off, and the tremors were back with a vengeance. I went after him, and explained, outside of Casper’s earshot, that she could be easily confused, and her meds were gone and she would need more to take effect before the procedure. “I’ll have to ask the doctor. If he says no, we do it without them.” Oh hell no. Do you understand how many procedures she’s had? How little patience she has left with medical people who poke and prod and hurt her without results? Do you get she might not agree to more if this does not go well? I know you don’t care, but do you hear me? “The doc left anyway. He thought he was done. I have to find him.” Casper was ready to leave, in her hospital gown. The only good thing about dementia? You cannot easily escape the confusing warrens of hospital corridors.

Finally a doc shows up, but will not talk to me. He is much too important for that. The woman next to us was wailing, the guy with pneumonia was gurgling, the upset guy on the overflow gurney was starting to get mad but was madder for us because he knew how long we had been waiting and heard the medication discussion. He told the tech to go her Casper meds, and offered to send his wife for them. Go Team Patient!

Meds arrive, and they tried to move Casper before I could even open them for her and get her to take them. Wait! She’s been in a dark holding cell, with lots of noise, she’s scared, and you aren’t letting her get the meds she needs on board before the procedure! “The doc says now. He’s in charge.” Not if my body is in front of the gurney he’s not. I’m still a big girl. Meds down, and with Casper a little reassured, we went to the room. Big tough tech guy asked Casper to move herself onto the table. Umm- she’s shaking. She needs help. We got her moved. The doc finally decided he would see us. He put down his Starbucks cup (reason for delay noted) and gave her a 30 second list of side effects. “Understand?” Umm, she cannot process that quickly. She held onto me and asked only if he would wait till the meds were in. “I have to mark you. I can do this on less cooperative patients. I’ll get you fine.” Well, that’s reassuring. Only she is cooperative. The shaking isn’t on purpose. The confusion is real. She held onto me tighter. “You have to leave. Now.” Panic on her face. “They said…” “No, you leave.” How about I stay until she’s calm and you have the Betadine done? Then I can help her manage that. “Out.”

I kissed her and sat directly outside the door. Techie came by-“there is a waiting room. We’ll come get you when we are ready.” Nope, I will be right here. She needs me when it’s over. The minute the door opened Casper was looking and reaching out. I was right there. It had clearly been hard for her. Techie was apparently glad I really was sitting there. For the next three hours we sat in recovery where we started our day, and every time my hand moved Casper’s eyes went looking, even when asleep. She almost fell when we got home. That fall risk thing once again. It’s real, I get it.

I really do appreciate the kindnesses shown, and the caring moments. This is not sour grapes. But if you work with patients, please remember they are people. If they have signs of dementia, orient them. A lot. Don’t move them without warning. Don’t give the same rote fast explanations. Let them have a support person. Go out of your way to make it happen. I have known lots of patients. I cannot tell you how many simply stopped agreeing to medical care because of the way they were treated. They gave up. Don’t contribute to that by being in a hurry. And don’t talk over someone. Eyes being closed are sometimes a defense mechanism, not sleep. Those ears can still hear you asking those questions, and the pain they cause is just as real as physical pain. Probably more so.

Thanks for listening. The wife.