The Other Side of the Call Bell

Posted: May 21st, 2013 under family, health, nursing, philosophy, psychology.
Tags: , , , , , ,

I work as a nursing unit secretary in both the intensive care and the step-down cardiology units at the hospital. I think I’m more cynical than I used to be. It’s easy to become complacent, and even judgmental toward patients. During one of my shifts an obese patient requested donuts, cookies and pie. Even if we did stock those items in the cardiology unit, I would not have given them to him. After receiving chest compressions and a defibrillator treatment in CICU, a patient sat up and asked for a cigarette. One night we had a patient suffering from alcohol withdrawals and undergoing detoxification. He kept yelling at everyone to get out of his house, and I had to call security when he jumped out of bed and threatened the nurses. Two rooms over another patient was constantly yelling…all night. She would scream “I want to go to sleep!” and “I want my meds!” After the nurse gave her some, she screamed “That ain’t enough!” Do these patients realize why they were admitted in the first place? I would like to say to them, “You brought this on yourself. I have no sympathy.” Nurse_BettyBoop

I answer the call bell when patients ring out. Patients push a button in their room which rings a box on my desk. I pick up the receiver and ask them what they need, then respond appropriately. It is often frustrating when the same few patients ring out constantly for seemingly trivial matters, monopolizing the time and attention of the RNs and CNAs. As often as I can, I try to help the patients myself rather than to call for the CNAs or nurses. I’ve noticed that the more I interact personally with the patients, the more compassionate and empathetic I feel toward them, and the more eager I am to help them. I understand how a nurse can develop a special bond with his/her patients. When the nurse takes on the responsibility of certain patients, he/she is accountable for them, takes ownership, and forms a connection with them.

Those opportunities I have to experience personal interaction change my attitude, and I truly want to make each of them comfortable and happy. I compare it to driving a car. When I’m on the road, the other drivers are “idiots” in my mind, and they need to go back to driving school. But I almost guarantee that if I encounter those same drivers in person–on the sidewalk, in a crowd, or at the store–my attitude and feelings toward them would be completely different. My vehicle separates me from the other drivers, preventing intimacy and personal human contact, just as sitting behind the desk and the call bell box distances me from the patients.

I’ve been working in the hospital for several years. My recent experience being a patient in the hospital as well as in a rehabilitation center has allowed me to empathize, relate to and identify with those patients who are anxious, frightened, in pain, isolated, helpless, dependent, and facing death. I took a copious amount of notes while in both places. The high cortisol levels in addition to all the medication I was on caused a great deal of confusion and anxiety, and many episodes of delirium. I often didn’t know what was real, and I had a difficult time remembering things from one minute to the next. I wanted to keep a record so that I could remember what what happening, who was who, and what I was thinking and feeling.

I will share some of the notes I took so that those reading may understand a little of what I was going through. Even though I cut some out, it is a lot to read. I felt that I needed to include them for readers to fully appreciate all the moments and thoughts going through my head.

Sunday, September 2, 2012

I heard someone say “Patient expired September 2, 2012.” I have episodes when I can feel pain, when I can hear things people said, but can’t respond. People keep asking me silly questions over and over again. Too many questions about medications. One RN kept telling me about medications he was giving me that I wasn’t even taking, telling me what they were for–which I knew was incorrect, and talking too quickly to give me a chance to respond. I’m tired of all the questions. He said he was changing my dressing, but it seemed like he was only pretending, and he was taking so long to do everything.

Me while I was intubated

Me while I was intubated
Picture by Brent Danley

Things keep happening that I feel like already happened. There are episodes when I feel like I’m dying, perhaps dreams. I actually feel the pain; I smell, hear, and see things happening really fast, and I’m paralyzed.

There are episodes when my lower abdomen feels full and uncomfortable, and I can’t breathe very well. I have pressure in my upper lungs. Lying down too much may be the reason, but sitting up too much causes pain and discomfort in lower abdomen. Pain meds help. I feel as though I’m deteriorating quickly. I hear someone say “aging syndrome.” I am frustrated feeling so helpless. Had a hard time ordering lunch because I couldn’t decide. I kept forgetting what I was ordering; focusing and counting carbs was difficult for me. I suck at math anyway. The experience of actually dying in my nightmare is frightening because I can actually feel my mind and body slowly declining and deteriorating…I’m reliving everything over and over again. I am cognizant of everything, and I can’t control it. I have to remember that all this stress and anxiety should improve with the hormones. Standing up and walking helped a lot.

20:40 – I’ve been instructed to press the EEG button when I’m having frustration, anxiety, and difficulty making decisions.

Monday, September 3, 2012

16:45 – Feeling much less anxiety. Maggie and Peg have been great. Kathy and Margaret are coming in and moving me around improperly, not supporting my head, rushing everything, and being very rough. This happened earlier today too. I feel as though I’m piecing things together more than I was earlier. I’m just starting to accept it and feel tired of fighting against it. I hate not being able to get my thoughts out on paper. There are more things that are happening that don’t seem to really make sense…as though I’m in a dream.

I'm in traction after falling and breaking my neck in the hospital

I’m in traction after falling and breaking my neck in the hospital
Picture by Brent Danley

17:48 – Kathy and two others came in and turned me. I had to ask for them to support my neck. They should have known to do that. Kathy apologized. Foley catheter is driving me crazy. I’ll be glad to get it out.

21:45 – Mom and the girls just left to go home. I told them I was having trouble thinking and expressing what I wanted to say. I cried. I was finally able to explain what I was going through. There were periods when things they were saying were nonsense to me. There was a lot of talk about caterpillars, but it didn’t seem nonsensical. It was wonderful having them here.

Tuesday, September 4, 2012

00:10 – Karen (RN) and CNA came in to turn me. This was all very realistic. They were very nice. This is why I didn’t press my EEG button at this time. Just dropped menu on the floor. Hate being so helpless.

02:03 – Pressed call button for dropped menu and misplaced pen. Karen told me she took my pen away to record labs. Going to stop pressing call bell. I hate having people come to rush in for unimportant things.

04:45 – Sound of heart monitor is stressing me out. Trying to relax and take deep breaths. It’s making me nervous and afraid to fall asleep.

06:30 – Court (my RN) came in with a CNA. He was surprised to see me sitting up in bed with my feet hanging over the side. I’m supposed to be on a bed alarm because of my fall precautions due to confusion, suspected seizures, and fragile bones. The alarm should have gone off. He looked over at the wall and said “Oh, they never even plugged in the alarm cords. She’s been here this whole time without the alarm on.” He and the CNA then both laughed about it. It wasn’t very amusing to me.

Thursday, September 6, 2012

05:30 – Woke up to loud pump alarm and a lot of pain. Wonder why they don’t control pain even when patients are sleeping. No one offers or asks if I want to clean up.

15:00 – Sometimes I just want to tell everyone to go away and leave me alone. Tired of people asking me questions and telling me things. I’m now still having moments of anxiety, problems trying to get my thoughts out, trying to make decisions. CNAs stood and stared at me while I tried to do my business. I was getting stage fright.

Kate frequently brought dirty chai's from Bard Coffee to us at the hospital.

Kate & Brent with “Dirty Chais”

20:00 – My visitors just left. I’m happy that everyone came. Jenna and I had a heart-to-heart talk. I see a lot of me in her personality. Kate made me a slideshow with the girls and is going to bring me a dirty chai from Bard Coffee. She’s so sweet. There are still times when I feel overstimulated after a while, and sometimes when I am feeling anxious, in pain, or overwhelmed. I work hard to be strong and overcome it. I feel exhausted and overwhelmed now. It seems that this whole event has caused Brent to become very negative and cynical. It is understandable, but it breaks my heart. I just want to fix everything. I just want to cry. I want things to be normal.

There are times I feel like things are going great and moving forward. But I hate being here. All the humiliation; the pump alarms, call bells and tube station alarm constantly ringing and beeping; wondering if I’m going to have a caring nurse and CNA (I hear them talking about me in the hall); continuous streams of people coming in; having to ask for help to go to the bathroom. I am still working on reading Brent’s blog so I can piece everything together, and respond to everyone, because I’ve missed so much and not clear on what’s going on. I am constantly being interrupted. So hard to focus. I need to put things in perspective. I am very lucky. It was great to hear about NE Rehab–that I’ll have somewhere to recover with good care, and Brent can go to work without worrying about me. He has taken on so much. I hate the U.S. healthcare system!

21:30 – I never ordered dinner. CNA brought me graham crackers and peanut butter with milk. I told her there was an after-hour menu for patients. She wasn’t aware of it. How is that possible? My blood sugar was 240-something. Don’t know why it would be so high. Court removed my central line.

22:20 – I’m so tired of fighting for myself. I just want to give up. Brent just called the RN station to tell them there’s an after-hour dinner menu. I don’t feel at all like eating. He takes such good care of me. People seem to think I’m just hanging out here at the hospital with nothing to do, but by the end of the day I’m so emotional, worn out, and frustrated. Don’t want to deal with anything.

23:00 – My stomach aches. I am sick of putting food in it. I don’t enjoy eating because it is a struggle to chew and swallow with the neck brace. I feel miserable. This light behind me keeps flickering on and off, and I’m so sick of “complaining” about things. I keep thinking maybe one night I’ll feel relaxed and maybe watch a movie. It hasn’t happened yet. I want so much to respond to those who have tried to contact me, and catch up; but I’m so mentally and physically exhausted. It’s a struggle to type on the computer with my weakened arms. Looking forward to NE Rehab. It’s going to get better. I have to remember that.

23:50 – CNA came in to help me to commode. She didn’t introduce herself. She had no idea about C-spine precautions, and I had to tell her what to do and what not to do. She took forever to do everything as if it were her first day or she just didn’t care. I got a new nurse. I think his name is Ed. He seems nice. He brought me earplugs right away. Every time you turn on the TV someone has to come in and press the volume on the actual TV in order for volume to work. Now I’m just complaining. I feel like my mind is never going to rest. I just want to sleep. I just want to relax. I feel like it’s never going to happen. Tired of writing. Now it’s a new day. I’m so uncomfortable. I don’t want morning to come and have this start all over again.

Me in my hospital bed

Me in my hospital bed
Picture by Brent Danley

Friday, September 7, 2012

00:45 – Ed came in to give me pain meds. I’d asked him about them a little earlier, and he said I was due at 01:00. It was nice of him to check on me. I’m sure he noticed I’d been crying, and I was embarrassed. He was very nice. He made sure I was comfortable and had everything I needed. Hopefully I’ll get some sleep.

01:55 – A CNA came in to help me to the commode. She has absolutely no personality and speaks in monotone. It is evident she doesn’t care. She handed me a cup and told me to pee in it for a urine sample. It’s hard to be able to relax and pee when you hear someone standing there fidgeting and waiting. When she returned, she asked if I wiped myself. I asked her “How could I have done that?” The toilet paper and wipes were out of my reach. Then she asked if I wanted to wash my hands. Obviously! I had just held my hand under a stream of urine! She didn’t even support my head and neck when she laid me down.

02:55 – It’s hard to sleep. So uncomfortable. Mind is racing. Can’t relax. There is loud talking outside my door. I called out to ask if someone would shut the door and turn off the bathroom light. I feel like I’m becoming hypersensitive.

12:55 – It’s very loud. I can’t sleep. Pump alarms keep ringing, people are talking loudly. The light is very bright outside. My neck collar is so uncomfortable which makes it difficult to sleep.

10:30 – Someone from New England Rehab just stopped by. Said I’ll be going there today at 13:30. So excited to be taking this step forward!

14:00 – The ambulance came to get me to take me to NE Rehab. I’m so tired. People kept talking over me. Couldn’t breathe very well. It was so nice to be outside and see the sky. I saw an airplane.

Saturday, September 8, 2012

09:35 – Erin from occupational therapy gave me a hot shower. It was absolutely wonderful. First shower since being admitted in mid-August. Shortly after I woke up, someone came in to ask if I needed anything. They come and check on me often and are attentive to the call bell. Keep having moments when I’m drifting in and out of awareness, inability to do tasks, and process things. I also quickly forget something or people say something that doesn’t make sense or is unrealistic. Am I going delirious? I keep hearing the same things over and over again.

10:50 – I am thinking back to my experience at MMC. They didn’t take very good care of my skin. I had a bad bed sore with skin breakdown in the crack of my butt from laying on it so much. It’s very painful.

16:00 – BJ (CNA) just took my vital signs. She is very chatty and kept suggesting specific things I might need that I hadn’t thought of. She suggested using a night gown for sleeping which might be more comfortable, and I don’t have to worry about soiling it. Mary, my RN, gave me suppositories earlier. I better not shit my panties.

19:00 – BJ helped me to the commode. She offered a pad to keep from soiling my panties in case I had an accident later. She offered to put a pillow behind my back so I could be comfortable on commode because she could see I was taking a while. She noticed my hair was really matted. She and another CNA (who used to be a beautician) combed through my hair and attempted to get out the tangled mess. So glad to be able to cut my fingernails today and excited to be out of a hospital gown!

Sunday, September 9, 2012

07:15 – Didn’t sleep well last night. I was uncomfortable, and the neck brace makes it hard to sleep. My roommate, Gertrude (who goes by “Maxine”), is a very sweet older lady. She just told me how she thinks the time goes by so slowly–that five minutes seemed like an hour. It’s so nice to have someone to relate to! Last night a CNA came in because one of us must have accidentally pressed the call bell button. When the CNA asked if she needed something, Maxine said “No, but it’s nice to see you.”

11:50 – Helen (my RN) and someone named Michael just changed my Aspen collar (neck brace). They cut it smaller, and it feels better. Helen just told me my family could wheel me outside in the wheelchair. I’m so excited! I could only eat a few bites of lunch because it’s so hard to chew. Good thing I had a Mighty Shake. Helen kept trying to open everything for me with my lunch, and I told her I wanted to do as much as I could for myself.

Jenna pushes me in the wheelchair outside New England Rehab.

Jenna pushes me in the wheelchair outside New England Rehab.

15:30 – Brent, Mom, Hayley, and Jenna just left. It was nice to see them. Mom brought in some things to brighten up my room and to pamper myself, which is really nice. Jenna pushed me around outside in my wheelchair. It was nice to actually be outside and feel the fresh air on my face. Brent and Hayley came shortly after. He bought me comfortable lounge-around clothes from Victoria’s Secret. He’s so sweet!

I’ve been having an off day. It’s frustrating not being able to focus, going through crazy sleep-wake cycles and constantly being woken up, feeling so overstimulated, having people all staring at me. I feel like I should have some kind of routine to perform for everyone. One moment I feel aware and clear, and the next moment I just feel fuzzy. I talked to Brent about how I was feeling. He gave me a hug and reassured me. I love that he does that. It really helps me to keep positive and keep fighting, to not stress so much. Everyone was able to watch me walk with my walker for the first time!

21:00 – Kate just left. She brought a game to play, but I was having a difficult time being able to follow it and understand the rules. I feel like an imbecile. I had a nice visit with her and enjoyed just having her here. Hopefully I’ll sleep well tonight.

22:55 – People keep coming in and talking loudly, making lots of noise helping Maxine to the commode. The earplugs are not drowning out the noise. I just want to sleep!!

Monday, September 10, 2012

Brent came to visit me every single day for the six weeks I was in the hospital and the rehabilitation center. I don't know how he kept going! He's amazing.  :-)

Brent came to visit me every single day for the six weeks I was in the hospital and the rehabilitation center.

02:25 – My RN, Minjing, just brought me pain medication. I woke up to hear my roommate Maxine getting put on the commode. She makes lots of constant moaning noises in her sleep. She was telling the CNA and RN all about how she has weird dreams and also keeps thinking about medications. It’s kind of bizarre, because I’ve been having the same experiences. Every night Maxine opens a drawer and rattles a sack around trying to find something. She does this every few minutes. It’s very loud. It makes it hard for me to sleep. I feel bad for her. I wouldn’t want to go through that restlessness and confusion. She’s so sweet.

05:45 – Minjing just gave me more pain meds. I woke up quite a while ago hoping not to need them, but I couldn’t sleep. Don’t like to keep being in a pain medication fog. Now I’m thinking it’s more of a sleep-deprived fog. Sleeping in 2-hour increments just doesn’t cut it. Mingjing is very nice.

06:40 – Just about to fall asleep when NordX came in to draw my blood. I give up trying to sleep. At least the pain’s gone.

10:55 – Emma, the dietician, just stopped by. I addressed my concern about not being able to eat much food in one sitting, but needed the calories. She had been having Mighty Shakes put on my tray, which has been helpful; and suggested eating eggs, cottage cheese, meat, or other dairy products. The food here is very bland. I understand why, as it’s mostly older people here. I guess it’s BYOS (bring-your-own-spice). I’ll have Brent bring me seasoning salt.

12:05 – Got back from OT with Emily. She had me practice wiping down counters in the kitchen, getting something out of the fridge, and filling a teapot in the sink. I never knew how stoked I’d be about doing kitchen tasks! We also practiced range-of-motion exercises with special tools and weights. I should know my OT & PT schedules a day ahead of time. I am very encouraged.

12:45 – Just ate the lunch I made with Emily for OT. I didn’t think I’d be so excited about cooking something as simple as spaghetti! I dropped the ground beef on the floor after pulling it out of the fridge, something I hadn’t anticipated. Emily handed me a “grabber” to pick it up. Emily even brought in a tablecloth and fresh flowers from home. I sat down a couple times to rest. As we were close to eating, I was feeling dizzy and lightheaded. I think I may have overdone it. Emily took me back to my room to lie down for a while and then brought me my lunch that we’d made.

Several times this morning I’ve seen and heard things that are not realistic or don’t make sense. My RN, Mary, stopped us in the hall on the way to the OT Kitchen to give me my meds. It clearly read “CNA” on her name badge, but I knew she was my nurse. There were things she said that I know weren’t true, but I don’t remember now. I keep hearing drawers slamming, but I don’t know where it could be coming from. It’s so frustrating not knowing what to believe! When Emily brought me the lunch we made, she brought the vase of flowers. She’s so sweet! I mentioned I was feeling some confusion along with my dizziness and light headedness. She suggested speech therapy, as it also deals with cognitive issues like short-term memory loss.

13:00 – Helen is talking to Mike about “black ‘n tans” and then Guinness & Pumpkinhead. These aren’t common drinks. It eems too coincidental. This is one of those times when I think people and life around me are catering to me. People are saying things that I’m thinking, feeling, experiencing. I have been experiencing this on and off. And situations and events are happening as I would want them to. I’m feeling groggy.

I loved when the girls came to visit me!

I loved when the girls came to visit me!
Picture by Brent Danley

19:35 – Mom and girls just left. I’m glad they came. It was nice to see them. Skye talked a lot about her shopping and clothes, and asked about what make-up she should use. She’s definitely in her teenage years! Jenna told me about how she was the only volunteer in her Spanish class to do a translation activity in front of the class. What a milestone for her! Hayley told me about two kids who were fighting over who gets to play with her. Brent left just before they came. I always look forward to his visits. It brightens up my day, and I feel reassured knowing that he’s taking good care of me and keeping everyone here (hospital staff) in line. My roommate Maxine had friends visit her from her Jehovah’s Witness church. They practiced a song together, and one woman asked us (Brent and I) good-naturedly if we’d be nauseous if they sang. When they left I told them I enjoyed their singing. The lady jokingly said “She’s mocking us!”

20:30 – Brent left a nice write-up about me about my condition and history so they would be aware and take good care of me. They should be aware that I have more health concerns besides just my broken neck.

Tuesday, September 11, 2012

09:45 – Did PT with Courtney. I really like her. She pushed on my legs to stretch out different leg muscles, and we walked around the unit. I could sense an improvement even from the day before with my mobility. Courtney put on a new collar. Every PT has a different method and idea of how the collar should be cut and adjusted. It seems like there’s always an issue with it. The size, tightness, plastic cutting into my skin, the padding… Oh, hell, it’s only three months! Hopefully I’ll have it removed after that.

Jenna tries out my hospital bed

Jenna tries out my hospital bed.

I had another OT session with Emily an hour earlier. She had me work muscles I was pretty sure didn’t exist. I think I overestimated how soon–or if–I’ll be able to go out running again. Simple tasks like crouching down to pick something up are going to take time and work. It’s still difficult for me to remember to hold my head straight. I try to think of myself as a robot, which makes me think of only twisting my torso like C3PO. Hey, whatever works. Emily seemed completely surprised that I had other health issues besides my broken neck. I had to tell her the whole story; then she didn’t know I couldn’t raise my hands above my head due to c-spine precautions.

21:00 – Just talked to Mom and the girls on the phone. Hayley is so cute and sweet. She told me she likes my voice. :) I love her cute little voice, too. (I had a hard time not laughing yesterday night when she called a “sifter” a “shifter.”) She’s so funny. She told me all about her fun recess experience playing dinosaurs with her friend Kaitlin. She told me how excited she was that I was able to cook lunch today. She said she was sorry I dropped the hamburger on the floor, but she thought it was neat that I got to use the “grabber” to pick it up.

Skye is growing up so fast! She had just gone shopping with Brent to get make-up. She was so nervous about putting it on the right way, right amount, and using the right colors. I reassured her and will help her tomorrow when she comes in. She is also troubled about boy issues. There is a boy she’s had a crush on for quite a while. She calls him her “crush.” She wants to approach him, but is very nervous. We talked about boys and I gave her some advice and reassurance which I hope helped.

Jenna is such a sweetheart. She said she wished she could kiss me on the cheek. She seems to be enjoying violin. She told me she was in violin with the 7th and 8th graders when I asked if violin class was challenging enough. I loved watching her as she watched the video of herself the other night. She was closing her eyes and moving to the music as though she was playing it and experiencing it. She has such passion about things. She is also so tender. I worry because she stresses about things she shouldn’t worry about.

I had a nice visit with Mom. I love her. She’s a sweetheart, and it’s so nice to have her here to help. After the simple directions I gave her, she got lost trying to find the beach. I asked if she’d ever taken a walk around town. When she said she hadn’t, I told her about all the shops on Main Street and gave her easy directions. I think she’ll really enjoy it, and she seemed excited about it.

Brent and Mom went out to dinner.

Brent and Mom went out to dinner.
Picture by Brent Danley

Wednesday, September 12, 2012

12:35 – There is so much to write about, and I don’t know if I can remember everything. I feel like since I woke up (around 05:15), my ability to concentrate, focus, remember things, process things, etc, is especially bad. I feel like such an imbecile that I’m writing down notes for everything so I can write about it later. Everything has been so rushed today. Not good sleep last night. There are no breaks between anything in my schedule.

I think after lying in bed for most of the time for three weeks, then sitting up straight all day and walking all of a sudden may be too much too soon. Perhaps it’s the lack of deep and quality sleep. I’m trying to make correlations. It’s frustrating not knowing when I’m going to feel this way. When this happens i feel exhausted, tired. People are still unaware and surprised by my complex medical history, and I’m sick and tired of recounting it. I just sat in my wheelchair at lunch, drank my shakes, had a couple bites of meatloaf, and cried. I miss Brent. I miss my daughters. I’m going to try to have a nap before my next PT session.

In OT Emily had me bend my knee to touch my foot to my butt while I was standing up. I couldn’t even do it. I also couldn’t bring my leg up to the side laterally. I raised it maybe half way or less. I was strange. I just expected to be able to do it, but it was too heavy. I’m realizing how much more work and time it’s going to take to be independent. It’s frustrating, but it makes sense and I’m learning a lot.

Emily gave me several neat tools. She gave me a couple of different grabber tools with which to pick things up off the floor like the one I used to pick up the hamburger while we made lunch. They’ll be very handy! I was really excited about that. She also gave me a gel ball, some theraputty, and a foam block to work with which will improve my hand and arm strength. She got me a basket to put on my walker so I can carry things around. I can just picture myself walking down the sidewalk with my tricked-out walker and groceries in my little basket like a little old lady. Ha ha!

Hayley feeds me

Hayley feeds me
Picture by Brent Danley

Mom and the girls stopped by. When they walked in I was on the verge of tears and so stressed from the day. I didn’t want the girls to see me like that. I had an Ensure shake instead of my dinner, which was nice. I had absolutely no appetite. Brent came in a little later. he’s so great about making sure I have what I need.

Courtney came in at 15:30 for my PT. I talked to her about my down day. We decided to skip the second PT session so I could rest. She’s going to call Brent about coming in during a PT session so he can walk with me while I use a walker. She’s great, and I enjoy talking to her during my therapy. Helen is one of my favorite nurses. She takes good care of me. She always makes conversation and I like her sense of humor. One day I heard she didn’t have any CNA help, so I tried to ask as little of her as possible. She still seemed happy to meet my needs. When I knocked something on the floor during lunch, she picked it up for me. I said, “Oh, man…I should have tried out my new grabber tool.” She said, “I’ll throw it on the floor again after you eat.”

18:20 – My evening RN, Diane, came in to give me meds. She has no personality, a very poor bedside manner, and no compassion. She’s very abrupt and quick to get out and does not ask if I need anything. She didn’t bother to ask where my pain was. She looked really annoyed.

Thursday, September 13, 2012

11:45 – It was wonderful having a shower again this morning! Emily washed my hair with real shampoo and conditioner. She was great about making sure I was comfortable and had me do as much as I was able.

16:00 – Finished PT with Courtney. It was great! She got me a special pad for my wheelchair made of a foam/gel that contoured to the shape of my butt so I would be more comfortable, and especially I have no padding down there myself. She wheeled me outside, where we stayed for quite a while. She massaged out the knots in my upper back and shoulders, and pushed on my legs and arms for a while to stretch out the muscles. It was so nice being in the wonderful outdoors!

Courtney had me climb stairs. I feel really good being able to do that! I discussed with her my discouragement about not being able to bend my leg higher behind me (bending my knee back), and she said that I was actually bending it about to where any normal healthy person could. I guess because it feels so heavy and I can’t see it (because of my neck, obviously), I feel like I’m not lifting it very high. She said that after just three days straight of lying down in bed you lose 60% of your muscle. Crazy!

Walking with Courtney, my PT

Walking with Courtney, my PT
Picture by Brent Danley

They’re going to do a 24-hour evaluation on me in which someone watches my ability to do different things safely and independently. Once I’ve passed that, I get a special green bracelet showing that I don’t need assistance when I feel stable. Waiting on Dr. Charbonneau to clear me to go out on a drive.

17:00 – Just dropped my grabber tool on the floor, which is really inconvenient. Now what do I do?

18:15 – Had family training with Courtney and Brent this evening. It was very encouraging! Courtney showed Brent how to open and close the wheelchair, monitor me, and support me while I use my walker, and watch/help me in and out of the car. It was successful. I was very excited. This means I can go walking alone with him anywhere, and that he can take me on a drive. Yay! he says he’s going to take me to a lighthouse. I’m SO looking forward to it.

Still having moments in which I hear things that are eerily coincidental and timely, especially with my roommate, Maxine. She’ll say some things that I’m thinking. It’s bizarre.

Friday, September 14, 2012

08:00 – I’m feeling mentally acute for the most part, but since I woke up I have some moments when I have trouble with my thought processing. Tha, my CNA, just gave me pain medication. She couldn’t have, thought, because she’s not an RN. I tasted a Fig Newton in my mouth without remembering eating it. I saw something I typed in Google which I don’t remember typing or would not have typed.

09:30 – I’m really starting to feel more independent. I washed and dressed myself with no assistance! I then asked Helen if I could use my walker and basket to go throw something in the trash while she watched me. While she was gone I dropped the cap to the toothpaste tube on the floor and used my grabber to pick it up. I also put my dirty laundry away in my closet. I WILL earn that green bracelet.

10:45 – Done with OT. I folded laundry! Woot! I passed. With the last item of clothing I told Emily I would just put it on a hanger. Emily had me pick my shoes off the floor, put them in my basket, sit in a chair, then put on my socks and shoes. I’m still surprised by the things that have always been so simple, and take effort and concentration now, and I appreciate being able to do. I’m having more pain today, but I really don’t want to be groggy and am trying not to take too much pain meds. My bowels are not moving well today. It’s very uncomfortable!

My friend Maggie often left her unit to come visit me and give me wonderful spa treatments.

My friend Maggie left her unit often to come visit me and give me wonderful spa treatments.
Picture by Brent Danley

14:20 – Incredibly discouraged right now. Dr. Charbonneau and my care manager, Andrea, came to talk to Brent and me. They seemed to think I was ready to go home in a week. However, with the neck brace I will not be able to drive myself anywhere (including all my doctor appointments), and that will be three months. I don’t really know how safe I will be by myself at home, which is dangerous with my weak and brittle bones. It’s going to take a long time for my muscle and fat to build up. Brent has this new job where they are being very generous and flexible. He can’t keep taking off work and worrying about me. I hate being such a burden! I was so excited about making progress. I didn’t like using the call bell, bothering people, or being the needy, demanding patient that everyone is annoyed with. I’m remembering how the staff complained about patients that were difficult as I was working as a nursing unit secretary at MMC. Even more, I don’t want people doing what I feel like can do myself. I want to be independent and do things I’m used to being able to do. I hate feeling like an invalid. I hate having periods of confusion. I’m trying not to take too much oxycodone because I’m thinking it’s making me really drowsy and unable to focus or function very well. If I don’t take it though, the pain is distracting.

My roommate Maxine’s constant mirroring of my own thoughts has started becoming almost therapeutic. It’s strange. Like a voice in my head. It seems very surreal. I feel like I’m a different person almost in a different life. I guess it’s only been about four weeks since I went to the ER, but it feels like my normal life and routine are fading from my memory. It’s frustrating and distressing to have theses constant periods in which it’s difficult for me to think clearly, and understand and make sense of something. I wish I knew what exactly triggers it, and that I could anticipate when I’m going to feel mentally acute. I don’t want to take care of important business when I might not be capable of making important decisions.

20:40 – My mood and mental acuity have improved a lot since earlier. Brent, Mom, Jenna and Hayley just left. I really enjoyed their visit. I’m glad they came–I really needed it. I loved looking at the pictures of Hayley playing soccer. At the same time it made me sad that I couldn’t be there to watch her. It cheered me up to have everyone here although I wish Skye had been here. I did call her earlier today to wish her a happy birthday. She’s going to “celebrate” tomorrow by going out to breakfast and going to a movie with Brent. Mom and the other girls are making her a “Better Than Sex” cake and will bring me a piece at some point. She wasn’t here tonight because she’s at a dance. Skye told me that she had a talk with Brent about boys. She said “No offense, but Dad’s advice helped a lot because he used to be a boy.”

Emily awarded me my green bracelet! This allows me to go to the bathroom, get things I need, and do laps around my room. I can’t leave my room unassisted, however.

Saturday, September 15, 2012

10:05 – Just finished group therapy. Most of the time in group therapy seems like a waste of time, at least for me.

17:45 – Brent, Mom, and the girls stopped by a little while ago and brought me a piece of cake Mom made for Skye’s birthday. I wish I could have celebrated with Skye. Their visit was brief, as they were headed out to eat, but it was great to see them and a good visit. My neck brace is more comfortable since they changed the back from an adult small to a pediatric yesterday. Now the top isn’t pushing into my occipital bone.

20:15 – Brent just FaceTimed me so I could watch as everyone sang “Happy Birthday” to Skye and she blew out the candles on her cake. It was a great idea! It was very nice to be involved in the celebration.

Me at Bug Light

Me at Bug Light
Picture by Brent Danley

Monday, September 16, 2012

In OT Courtney showed me the outpatient gym, and I tried out one of the exercise machines there. I walked quite a ways by myself! Courtney was there to hold my hand and be available in case I needed it. We discussed using a cane.

16:30 – I’m so happy I was able to get a day pass today! It was so nice to get out of here and go somewhere else, to get outside, to be somewhere familiar, and ride in the car! Brent, Mom, and the girls came to get me, and we went to Bug Light. The weather was perfect! It was a beautiful day. Never have I appreciated the smell of the ocean, the breeze, and the gorgeous view as I did today. I enjoyed my time with everyone. The girls took turns pushing me in my wheelchair, and I walked some with my walker. Mom attempted to get the obnoxious dreadlocks out of my hair with baby oil. I think it’s a lost cause, and I’ll probably cut it off. The mat is pushing my head up when I lie on my back and really making me uncomfortable.

Sunday, September 17, 2012

My new haircut

My new haircut
Picture by Brent Danley

18:15 – Brent cut my hair! The big round mat of hair on the back of my head (my “dreadlock”), above my neck brace, I decided was beyond hope. No one has been able to get it out, and it’s very uncomfortable when I’m lying back on it. I’d asked Brent to bring in hair cutting scissors. He was very nervous about doing it and asked if I was sure. I’d been thinking about it a lot, for a while. If short it would definitely be more manageable, comfortable, and look better with my neck brace. So Brent cut out the knot, then the rest of my hair a little so it would look even. He did good! I looked at the huge mat of hair, as well as the rest he cut. It was a lot! But I’m really glad he did it. I feel much better. He said it looks good. I think it’s nice, and I think I’m ready for a change anyway. I’ll probably have Glenn, the CNA who was previously a beautician, even it out later.

Monday, September 18, 2012

09:45 – Emily assisted me with a shower this morning. It felt great! Much easier for Emily to wash my hair with the big mat out of it. After my showers I always get a fresh Aspen collar, as it’s soaked from the water. I look forward to the opening of the collar and having it air out. Today Emily asked if I didn’t mind lying still for a while so she could wash out some of the pads. Of course I didn’t mind! It felt so good to have my neck unconstrained and feel the air on it! I look forward to these moments.

11:00 – I made good progress in PT. Courtney said that I was even better doing the flight of stairs than I did yesterday. My left leg is definitely weaker, and I had to work on strengthening it especially. I did the exercise bike. I’m doing more independent work with Courtney, and I’m trying to focus on walking using my leg muscles, using my walker as a safety net rather than as support. I notice the increasing strength and stability of my muscles, which is encouraging. Courtney showed me some butt muscle exercises I can do in my room which I really need.

My weight was 81 pounds this morning. Why is it taking so long for gaining weight? I asked Helen if they had any standing scales, and she said they didn’t. I thought that was absurd. I asked how long it’s been since my bed has been zeroed out, and if she would zero out my bed again just to make sure it’s accurate. I was about 2 pounds or so heavier than this morning, but then she mentioned that I had just eaten breakfast.

I’m getting a lot of compliments on my new haircut. Everyone says it looks really good on me, and Courtney and a couple other people said I have the right (petite) face shape for it. Brent did good. I’m going to watch a street hockey game today at noon out in the parking lot, so my lunch is scheduled to come early. The street hockey game is for National Rehabilitation Week. I had a lot of sleep last night and feel good.

Street hockey game at NERH

Street hockey game at NERH

12:50 – Enjoyed sitting outside and watching the street hockey game. Players were a mixture of NERH staff and patients. One goalie was in a wheelchair with a spinal cord injury, and the other was a patient Courtney said has been her for six months who has Guillain–Barré syndrome. He was briefly a quadriplegic. The weather was perfect–perfect temperature, overcast, light breeze. Between that and the oxycodone, I kept dozing off. The Portland Pirates mascot was there.

I felt bad for Helen, my RN, today. She doesn’t have a CNA to help her again and has been doing pretty much everything herself. My sweet roommate, Maxine, has moments in which she becomes very confused and impatient, and thinks people are against her. She kept wanting Helen to do things for her and arguing with her, which also happened to be during change of shift–a stressful and busy time for nurses.

14:30 – Trying to nap before OT, but I’m too uncomfortable. I’m having bowel and constipation problems again. Helen had me insert my suppository so she knew I’d be comfortable doing it at home. Maxine also had a suppository, so we are both fighting for the bathroom. Ugh! Helen has been bringing me snacks as ordered by my dietician. It’s nice to have little things to eat throughout the day. When I’m not hungry, at least I know I have these custom snacks available in the kitchen for me when I want them, and I don’t have to stuff myself at meal time and feel miserable. Courtney arranged for us to do a home visit on Thursday. She has a car checked out from 10:00 to 14:00, and she, Emily, and I are going to drive to my apartment to see my living conditions and the things I need to do; what I have to work with. They can better determine what I need, and they can show Mom and I things I can do to make things easier, and how to best get around. I think it will be very beneficial, and good to get out of here for a while. Also good to see home!

15:30 – Donita, the secretary, wheeled me out to the hockey game today. We talked about how great it was to get away from the desk. I mentioned that that was one reason I liked to respond personally to patient call bells myself. She’s been working here about 25 years. I could not imagine being a secretary that long. Emily gave me some abdominal exercises to do while I’m in my room at my OT session a little while ago. Strengthening my core helps with my walking and general mobility.

Wednesday, September 19, 2012

07:30 – I was not in a position to eat when the CNA brought me my snack, so it was put back in the kitchen fridge for later. When I was hungry last night after dinner and asked Diane (my night RN) for my cottage cheese and fruit, she said she couldn’t find it. She said things get thrown away if they don’t have a date on them. She rushed away without offering something else. I would have called her back if I didn’t have some snacks in my drawer. Plus, I did not feel like dealing with her anymore. I asked her later about getting melatonin. When she brought me my 21:00 medications and I asked her what they were, she said, “They’re your usual night time meds.” I’m still trying to figure out what drew her to nursing

Glenn walked in later and asked if I still wanted my hair cut. I guess Helen had reminded him about me, and he said he wasn’t so busy tonight as he was the night before. He’s worked at a couple different salons in the Old Port. He did a great job! I’m so happy to have a cute new haircut that will be easy to take care of.

Thursday, September 20, 2012

08:00 – Helen is my nurse again today. I’m always happy to find out when I have her. She often sits down to talk to me and explain things to me. It makes me feel like she’s not in a rush, and that she cares. She also seems to know exactly what I need, and she’s always following up to make sure things are being addressed and resolved as they should be.

13:30 – Just returned from my home visit. Once we got close to the Saco exit, it almost felt as if I hadn’t been away. It was nice to be home again, even just briefly! I’m glad Brent was able to be there to see how I did and what I would need while at home. The stairs were more challenging than I anticipated, and more so than the stairs here that I’ve been practicing on. They are steeper, and the second flight has only one rail, which makes a big difference. I realized how very weak my legs are still. I will probably need a commode frame for the toilet because it is too low for me, and I’ll need a shower chair. I’ll need assistance climbing the stairs for a while. It will be nice to have PT visits at home, which should be about three time a week.

14:00 – Dr. Charbonneau came by. She’s spoken with Courtney and Emily about our home visit. She said she would like to change my discharge date from Saturday to Wednesday, as they felt I needed more time to work up my strength for the stairs. I felt good about it. I don’t feel comfortable taking those stairs yet, and I think a few more days will make a difference. When Emily came to get me in my room this morning, my left knee buckled, and I began falling to the floor. I had taken a step from the walker to the chair. Emily was standing right there and reached out to grab me under my arms–just in time. She caught me just before I was about to hit the floor. I screamed as I fell, because it surprised and scared me. Anyway, I really need to get strength and more stability.

Saturday, September 22, 2012

I had a day pass to leave New England Rehab hospital for a few hours. We went to Macworth Island. I did some walking while holding onto Brent's hand, and he pushed me in my wheelchair when I got tired. It was a great outing!

Brent, Mom and the girls on Macworth Island

16:40 – I just returned from my outing. I decided on Macworth Island. I’m so glad I did! I really enjoyed it. We didn’t end up using the walker, because I wasn’t able to maneuver it very well over the bumpy, rocky path. I walked while holding Brent’s hand, and his other arm was around me for security. One of the girls would walk the wheelchair behind me like we did at Bug Light. Brent pushed me when I was tired from walking. It’s such a nice walk and beautiful view walking through the wooded area and seeing glimpses of the ocean. The weather was great, and beginning to get a little cold. I loved the combination of smells from the recent rainfall, the woods, and the ocean. I miss Brent and the girls, and it was nice to spend time with them. I’m glad Mom was able to come. She hasn’t been out to many places since she’s been here, which is a shame.

Sunday, September 23, 2012

My new roommate Leah and I worked as a team very cleverly today. I realized that the person who brought me back from my walking group therapy session (in which most of my time was spent sitting and waiting) left my walker and grabbers out of reach. Leah offered me her grabber in order to reach mine. I stepped up from my wheelchair to take the grabber from her hand. I then moved over to my bed, used her grabber and successfully clamped onto my grabbers, which were sitting on the chair. I then used my heavier, stronger grabber to hook onto my folded-up walker and pull it toward me. I unfolded the walker and brought Leah’s grabber back to her. You have to be creative in here!

Monday, September 24, 2012

11:55 – I told both Emily and Courtney about my weekend excursions. They were very impressed with how much I was walking. I hadn’t done any stairs, and knew how weak and unsteady I was climbing them. When Courtney brought me to the stairwell I was prepared for a difficult and slow climb. However, with my first step, my leg felt surprisingly strong and steady. With each step I felt more confident, and I climbed the entire flight without wobbling or stopping to rest or steady myself. I tried walking up holding onto both railings, and walking up facing one side and holding onto one railing (sideways). Courtney cheered me on as I took the second flight. I didn’t feel overwhelmed or tired afterward. Courtney thought maybe all the walking and activity increased my confidence which helped in climbing the stairs. I’m sure it also helped my coordination, balance, and strength. Courtney had me use an outpatient exercise machine which worked my butt and back thigh muscles which are used primarily in stair climbing. It was a good workout. I feel much stronger, encouraged, and confident today. I need to rest from writing. My right shoulder is really hurting. Wish I’d damaged my left shoulder instead, since I’m right-handed.

19:00 – Courtney came by around 17:15 so she could show Brent how to change my Aspen collar neck brace and how to replace the pads. I told him how complicated it was, and he kept saying it looked simple and that even a monkey could do it. I could tell Courtney appreciated his sense of humor and enjoyed giving him a hard time. He did a good job changing my brace. He had lots to do, so he left shortly after that.

Wednesday, September 26, 2012

09:30 – I go home today! Having Helen as my nurse made it a perfect last day. She told me I was the perfect patient and enjoyed taking care of me. She has been wonderful. She is so positive and cheery, and has so much energy and enthusiasm. I don’t know how she gets so much done with all her patients and still finds time to talk with us, follow up, and do extra things (at least for me) to make my stay more positive. She’s a great example of patient advocacy.

Trish was my CNA today. I’ve had her quite a few times. She’s very nice, responsive to my needs, and personable. I asked her (jokingly) why my schedule wasn’t written on my whiteboard in my room, as my roommate’s PT/OT schedules were written on hers. Trish said “Well, you’re being discharged today!” I told her “Then that’s my schedule. I want it in writing.” She laughed and wrote “Going home” with a heart around it. She said “Normally I put a happy face next to it, but for you I used a heart because you’re special.”

I learned in nursing school that the fuller definition of medical care is to cure sometimes, to relieve often, and to comfort always. This has has always stuck with me. When overwhelmed by the biomedical needs of the patient and complexities of the treatments, it is difficult to attend to the psychosocial needs of the patient and family.

It is important to see the person, rather than the illness. The best doctors and nurses I’ve had were those who took the time to sit down with me and actively listen, made sure I understood everything, and ensured my needs and concerns were being addressed. I could sense their genuine concern as they showed an interest in me, and not just my diagnosis.

Being on the other side of the call bell has truly opened my eyes. Attitude and bedside manner makes all the difference. As a patient I have had caregivers who do not seem happy to be there, who seem rushed and annoyed by being inconvenienced. I have also had caregivers who put their whole selves into their job, who make me feel that I am a priority, and that my needs are important and significant. It concerns me how much miscommunication there is among hospital staff. It makes it that much more important for patients to be their own advocates. I want to thank those nurses, CNAs, physicians, radiologists, phlebotomists, therapists, dietitians, secretaries and other hospital staff who were there with a positive and caring attitude; who cared for me so thoroughly and compassionately while I was one of those patients.


  1. Wow! It was difficult to read this! I am so amazed by you always, but this really helped me to see just what you went through. It amazes me even more now that we has a hard time keeping up with you in New York and Boston! You are an incredible inspiration to me! I love you so very much!

    Comment by Amy — May 21, 2013 @ 10:22 am

  2. Very well written. Reading your experiences from when you were in the hospital is heart breaking. It really changes how you act with patients after you’ve been one for so long. I love you!

    Comment by Sara Sterling — May 21, 2013 @ 11:48 am

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