Sunday, September 30, 2007


I have a question for any nurses that happen to read this. How much is it okay to ask a patient's relatives to do? Here's the reason I ask:

This morning shortly after I got to the hospital to visit Donny his CNA came in and he asked her for a cup of coffee. She said she'd get it and showed me where it's at. She let me know that it's okay for me to get him what he wants out of the pantry.

A little while later his RN came in. He was concerned about the need to monitor Donny's intake and output. I was asked to keep track of the beverages that I got for him for this purpose. All of this seemed reasonable and I was glad to help.

That's when the RN started talking about the fact that Donny needed to use the urinal that had been provided so that they could measure his output. Again, that's a reasonable request.

And then we enter the field of annoying me. The nurse turns and looks at me and gives me directions about needing to measure the output and write down the time. He went on to tell me that half the CNAs had been laid off and so our CNA had a whole unit by herself. So even though I was annoyed, I didn't complain.

A little later my husband wanted to shower and get clean linens on his bed. He was grossed out by the blood on the linens he had and wanted to start fresh. (Let me say here that it wasn't huge amounts of blood. No pools or anything like that, just enough to bother him.) I asked his RN for towels so that I could shower Donny and let the RN know that Donny's linens needed changed. He brought everything that was needed for both jobs into the room and left.

I showered my husband (assuming that somebody would come change his bed while we were in there) and put clean clothes on him. I volunteered to do this because I knew that Donny would be more comfortable with me helping him than with anybody else.

We came out of the bathroom to find that nothing had been done about his bed. At this point I decided that it would be easier to deal with things myself than to try and get help. As I was getting started a member of housekeeping staff happened to walk by and see what I was about to do. She stopped me and did it herself. She let me know that even though she's not supposed to change the linens in a room that's occupied she didn't mind helping this nurse out since she thought he was a nice guy.

A little later the RN (who's name we never found out) came in and made an offhand comment that he had assumed that I'd change the linens. That's when Donny pointed out that I had surgery on my hand a few weeks ago and still wasn't supposed to be doing things like that. The RN said something about how we hadn't told him that. In my opinion that's not the point. I never should have been expected to do the nursing staff's job.

I really don't know how I should handle this. My mom says that I need to bring it up to the head of nursing, especially since I'm now uncomfortable leaving him there for too long without a family member there to care for him. Tonight his RN has a student with her, so I know that everything will be by the book, but what about after that? I don't want the nurses to take it out on him that I said something, but I feel like I shouldn't just let it go.

The other problem that I have in regards to confidence in the nurses is because of that RN. His mannerisms combined with his severe case of the sniffles leave a person with the impression that he's having issues with an illegal substance. Now I really think that it's an unfortunate case of an oncoming cold and natural jitteriness, but it leaves that niggling doubt. That was his day nurse, but it still makes me uncomfortable. Especially when combined with his comments about liking to give patients drugs and him instructing my husband how to get the maximum pain reliever prescribed. It just all really bothers me. I don't know what I'll do. I guess that I just need to sleep on it.

Saturday, September 29, 2007

Wrong Again

I figured out the problem. Things didn't fall apart because of a comment to my aunt. Things fell apart because I wanted to do my homework. My proof:

Tuesday afternoon I planned on working on my homework. Instead I wound up taking my great-aunt into ER.

Wednesday I planned on doing homework. I ended up driving my mom to her appointment with her therapist. Before leaving I was told that she needed to be on a 24 hour watch, and that I was responsible for the daytime shifts.

Thursday I was too overwhelmed to worry about homework. I went to physical therapy and it was great. Everything looks good, I have good range of motion, all is A-OK.

Friday as I got home from a doctor's appointment I told my mom that I had a mountain of homework to do before class in the morning. I decided that all my other plans for the evening would have to be back-burnered until I could get ready for class. And then we walked into the house.

My husband met me at the door saying that he needed to go to the hospital. Apparently he couldn't breathe and was out of inhalers. He has COPD (in addition to everything else) and breathing problems have to be taken seriously.

We arrive at the ER and I drop him off at the door before going to park. I notice the crowd inside and figure it's going to be a long wait. I hadn't really expected anything else for a Friday night.

I park the car and go in. As I walk in to the waiting room I notice a nurse standing out there, but thought nothing of it. I'm standing there filling out the registration slip when my husband notices me and says, "Oh, there's my wife." The nurse then turns and lets me know that his sats are okay and they'll be seeing him soon. Apparently they heard his breathing when he walked in and decided to check right away. It is now 7:00 p.m.

Not very long after turning the registration slip in to the triage desk they call my husband in for triage. This is a pleasant surprise, usually with a crowd this size there's a fairly long wait before you're triaged. He gets in there and the nurses start asking if the information from last time he was there is still correct. This is new, and appreciated. Previously they said that they didn't have access to records from previous visits. They tell us have a seat and we'll be called back shortly. This is a euphemism for admitting will ask to see your insurance information and in a few hours we'll come get you.

Imagine my surprise when after a very short wait we're taken to a bed for my husband. And a horde of people descend. The nurse came in and started getting Donny set up. And then the other nurse came in to do whatever she needed. And then the respiratory therapist shows up to administer a breathing treatment. And he has a student with him. And there's the lab tech to do the ex ray. And then there were a couple of people that I had no clue why they were there. I stepped around the corner for the ex ray. As I was standing there I looked at the clock. It was 7:20 p.m.

About 8:45 or 9:00 we got word that there was a little pneumonia in both lungs. The doctor said that since Donny died last time he had pneumonia they would be admitting him even though it's not that bad.

About 10:00 we were informed that there was a room for Donny, but housekeeping needed to finish cleaning it before he could be transferred. The nurse up there was supposed to call back in about 15 minutes to let them know to bring Donny on up. About a half hour later the ER nurse called to check on the room again, same story. At 11:45 I finally gave up and went home. It goes against the grain to leave a loved one in ER, but I had to be up early for class.

Tomorrow I'm going to sit in Donny's room at the hospital and do my homework. Whatever goes wrong, I'll already be there.

Thursday, September 27, 2007

And So We Begin

I started physical therapy today. The staff seems to be a great bunch of people. This should be an interesting 2 months. Right now I'm going 3 times a week.

I surprised the therapists today with my range of motion. I've been practicing moving my hand after talking to a few people who lost more range of motion than I'm willing to give up. Learning sign language has not yet been scratched off my lifetime to do list, so I need to keep my range of motion. There's still some work to be done, but I'm further along than expected.

Apparently my right hand is still weaker than my left, and since I'm right handed that's not acceptable. So I have to do stuff for strengthening. I'm not sure what all they'll have me do, today I just played with some dry pinto beans.

I was surprised how sore my wrist was at the end of the hour. I figured that with how little I did it wouldn't affect me. I'm hoping that it was the tests that got to me, not the beans. If running my hand through beans leaves me sore then I'm in way worse shape than I thought. But the hand massage at the end was great.

Wednesday, September 26, 2007

What Not to Say

I was talking to my aunt the other day and commented that life was calming down and falling back into a routine. Apparently this is code for I want everything to fall apart again.

I drove my mom to her therapy appointment today. Normally she goes by herself, but my dad asked me last night to drive her there. At the end of her appointment her therapist came and got me to go talk with them in her office. Apparently my mom's choices were to tell me that she's suicidal or have the cops called. So now we can't leave mom alone at all. Fortunately we have a friend that mom can go visit while I go for physical therapy tomorrow. It's also a good thing that I only have tax classes on Saturdays, because dad's home then. I just wish that mom wasn't hurting so bad.

And then I come home tonight and realize that in the next couple of days I need to take my husband in to the ER and have his ammonia levels tested. I really wish that his doctor's office could do it, but we always get sent to the ER. This time I just going to cut out the middle man and take him to the hospital. I hate doing that, because it takes forever and he has no patience. I'm looking at a couple of hours sitting in the waiting room trying to keep him calm so he doesn't become verbally abusive with the staff. This won't be fun.

The next time I'm tempted to say that it's calming down and getting back into a routine I need to staple my mouth shut. And then go in and have it sewn. And then somebody please pass the duct tape.

Tuesday, September 25, 2007

Unintentional Results

I read a blog where a nurse was ranting about the awful families that she has to deal with. I've spent enough time sitting with people at hospitals to know that there's a whole lot of truth is what she said.

But I was feeling insecure and so I took her general comments too much to heart. And I posted and let her know what I was feeling. This apparently hit her harder than I realized it would.

I'm sorry if I made you feel bad. I really do know that you didn't mean every single visitor was awful. I was just feeling insecure and let that spill out.

And for all those out there who are visitors in hospitals, please be kind to the nurses. I have the utmost respect for them, and you should too. Who else is going to do all the nasty things that they do, and without making you feel bad about it. Remember, they are the ones who will hold your hand and help you understand when things go terribly wrong. Be careful not to make them go away, you will need them again.

Wednesday, September 12, 2007

A New Reality

On Monday I took my husband to his monthly doctor's appointment. His health is bad so he has to go once a month. I missed August's appointment, but my husband told me about how great it went. He said the doctor even talked to him about a possible full recovery.

This month was a different story. There had been a hospitalization in-between, but my husband appeared to be as well now as he has been lately. According to the doctor there was a huge difference between now and 1 month ago.

At this months appointment the doctor asked if anybody had discussed transplant with us yet. My husband has cirrhosis of the liver, and his liver is shot. A couple sentences were exchanged with the doctor and he realized that Donny's not eligible to go on the transplant list yet. He only quit drinking 5 months ago and apparently it hasn't been long enough.

So the doctor talked about our new reality.

Our new reality is that Donny will never be better than he is right now. With every hospitalization his level of functioning will decrease. Eventually my husband will die of liver failure. Apparently it's slow and painful.

Our new reality is that we will never have a place of our own. We've been living with my parents trying to get our finances in order so we could afford a place. Now his health is so bad that I need help caring for him. Right now I just need emotional help, but as his needs grow so will mine.

Our new reality is that I have to give up my last hopes of us having a child. This means that I'm probably giving up all hope ever of having a child. I'm only 30, I don't want to give up.

Our new reality sucks, and there's no escaping it.