For quite some time now I've been wanting to do a post about how I spend my days. NaBloPoMo seemed like the perfect time!
I plan to be fairly detailed in this post because I want it to be real. I don't want to sugar coat my reality for you. =) I've spent some time jotting down when I do things and how long it takes so this is an average weekday for me. This day starts at 12:00am and ends at 11:59pm.
3:00am - My alarm goes off. I get up, go to the kitchen and prepare a medication to give to Dorothy. She has trouble sleeping through the whole night and needs a "booster" medication to help with this.
3:02am - I go into Dorothy's room and give the medication through her feeding tube. Luckily, she stirs but does not need anything else from me so I adjust her pillows a little bit and head back to bed.
4:41am - I hear Dorothy's bell again and go in her room to see what she needs, grumbling because it's only 45 minutes until my alarm goes off. She looks at me quizzically and I ask her if she rang. She shakes her head and I go back to bed, grumbling some more because I'm hearing the bell in my sleep.
5:25am - My alarm goes off and I hit snooze.
5:30am - My alarm goes off and I hit snooze.
5:35am - My alarm goes off and I hit snooze.
5:40am - My alarm goes off and I hit snooze. (I am REALLY bad at getting up in the mornings.)
This continues until 6am.
6:02am - I finally drag my butt out of bed, knowing that I will be 10 minutes late to work again.
6:03am - I stumble into the kitchen and flip on a dim light. I turn the hot water on, wash my hands and leave the water on to warm up.
6:04am - I run 100mLs of water into a measuring container and pour in one can of Jevity (the liquid feeding tube food). I set that aside and rinse the can.
6:05am - Once the water is hot I run about 2 Tablespoons into a small cup containing Dorothy's meds that I crushed the night before and mix them around to dissolve them.
6:07am - I take a syringe and pour in 20mL of one liquid medication, then 5mL of another medication, then 10mL of an antibiotic Dorothy is currently on. Then I pour in the water with the dissolved medication. I put the plunger in the syringe and push the air out. Then I fill another syringe with filtered water and do the same.
6:09am - I place the two syringes, plus another empty syringe into a dish and carry that and the container of water and Jevity into Dorothy's room.
6:09am - I set the containers down on the cart next to Dorothy's bed and raise the head of her hospital bed so she is not so reclined. She barely stirs and goes back to sleep.
6:10am - I take the feeding bag off the IV pole and close off the line. I pour the water and Jevity into the bag, close the top and "prime" the bag (running the feeding mixture through the line so there is no air).
6:11am - I open the top of Dorothy's feeding tube, put the empty syringe into the top and open the clip that closes off her tube. I use the empty syringe to suck air out of her stomach so she doesn't feel so bloated after eating. This takes anywhere from 1 to 6 syringe-fulls to complete. Each time I clip the tube closed, remove the syringe, push the air out and re-insert the syringe.
6:13am - I give Dorothy her medications and then flush the tube with 50mLs of water (just as a visual, 50mL of water is approximately equal to 1/4 cup). I insert the end of the feeding bag line into her tube, open her tube and start the drip.
6:14am - I take the syringes and containers back to the kitchen, rinse them out and lay them upside down on a cloth to dry.
6:15am - I head for the bathroom.
6:17am - I finally step into the shower.
6:42am - I step out of the shower. (Yes, I take crazy long showers. It's what I do instead of drinking coffee. And yes, I know if I cut my shower shorter, I would not be late for work.) I put on lotion, moisturize my face, etc.
6:49am - I head to my room to get dressed, stopping in the hallway on my way to peek in Dorothy's room and make sure the feeding tube is still dripping (sometimes it gets stuck). It's not, so I go into her room and adjust the drip speed. It will have to drip fairly fast so Dorothy gets her full feeding before I leave for work.
6:50am - I head to my room to get dressed for real. I notice that it's 6:50 and think, "Ugh."
6:52am - I go back into the bathroom to fix my hair and brush my teeth. This is a ponytail day or an air-dry day because I'm running so late. No time for earrings, etc.
6:57am - I go back to my room and pack my "work bag" with a book, my hairbrush and anything else I need for the day and grab my purse.
6:58am - I set my bags by the door and go into the kitchen to put my lunch in my lunch bag (I packed it the night before and left it in the fridge).
6:59am - I fill a syringe with 50mL of water and head back to Dorothy's room. I stop the drip line, clip off the feeding tube and remove the line. I flush her tube with the water and clip everything off and close it up. If she's awake I ask her if she needs anything and often I adjust her pillows whether she's awake or not. If she is awake she will likely ask for the dog to join her on the bed.
7:01am - I go into the kitchen, throw away the feeding bag (we use them for one day (4 feedings) and the daytime caregiver will start a new bag) and rinse out the syringe. I wash my hands, put on lotion, don my jacket, grab my stuff, turn out the lights and head out the door.
7:04am - I think to myself that I'm not doing as bad as SOME days, timewise, and I text a coworker to tell them I'm on my way. I put my stuff in the front seat of my car and drive to work.
7:11am - I arrive at work after getting stuck at two lights, park and walk in.
7:14am - Ok, so I'm not doing great on time after all. I clock in and start my shift.
During my work day I will often e-mail Dorothy's daughter about things, print new med sheets or answer questions from Dorothy's friends at the hospital about how she is doing. I'm never really "off" from being a caregiver.
3:30pm - My shift is supposed to end but since I was late this morning I'll try to stay a little bit late this afternoon to make up the time. I often will clock out closer to 3:45 or 4.
3:45pm - I leave the hospital and go across the street to the pharmacy. We are out of cough syrup, which Dorothy takes 3 times a day to help reduce phlegm. There is a line so I wait.
3:55pm - I finally walk to my car and leave campus. (Sometimes if I actually DO get off work on time, I will run a quick errand after work. There are days when I do this just to snag 15 minutes by myself.)
4:05pm - I get home, gather my stuff and go inside, shushing the dog as I walk through the door. I go in my room, put my stuff down and give Charlie a quick rub-down because if I don't, he won't leave me alone until I do. He'sjustsoexcitedbecausehehasn'tseenmeALLDAY!!! Dorothy is often sleeping in her wheelchair when I get home.
4:09pm - I go out to the kitchen and talk with Polly (the daytime caregiver) for a few minutes about how the day went and if there is anything I need to know. We have a passdown notebook where we write notes to each other, but verbal communication is very important, too. She fills me in on any major changes while I wash my hands.
4:15pm - Polly leaves and I go over to Dorothy to check on her. She may need her pillows adjusted or she may want her Kindle or laptop or TV remote. Often times she will be in the middle of a feeding so I wait for that to finish before I lay down for my nap. I busy myself by reading any notes from Polly or Hospice and looking over the feeding log for the day.
Sometimes a therapist or nurse is at the house when I get home but most often it's just Dorothy and Polly. If there is someone else there, I usually talk with them and glean any information I can.
4:30pm - After taking care of everything needing immediate attention, I go in my room, change into jeans and lay down for a nap. On a good day there are no interruptions and I might sleep for an hour and a half. Most days are not like that. =)
4:35pm - I fall asleep (which I've gotten really good at doing quickly).
4:45pm - The phone rings. It's usually either Dorothy's mom (we will call her back in the evening), a friend from church (who calls almost daily and tells me, "THIS IS MARYELLEN! YOU TELL DOROTHY I'M THINKING ABOUT HER AND I LOVE HER AND SHE'S IN MY PRAYERS. OK? YOU TELL HER THAT. ALRIGHT, BYE-BYE. She's a freaking hoot but there are days when I wish she would skip calling. ;), or Hope (a friend from the hospital who is over at least 4 days a week). I take the call and then go back in my room, taking the phone with me in case it rings again.
4:55pm - I have just barely fallen asleep when I'm woken up. Charlie has lost his toy under a piece of furniture and is growling at it, willing me to come and rescue it for him. I sigh, go out and shove him out of the way and retrieve the toy. Dorothy and I shake our heads at each other because he does this at least 3 dozen times a day. I figure I might as well feed Charlie while I'm up because in ten minutes he'll be bugging me about that, too.
5:15pm - I have just gotten back to sleep when the doorbell rings. It's Hope, here to take Charlie for a walk. He FREAKS OUT BECAUSE OMG, HE HASN'T SEEN HER SINCE YESTERDAY! and barks and jumps and is generally uncontrollable. She gets his leash and says hi to Dorothy while Charlie waits VERY impatiently and loudly for her to hurry up. They leave and I go back and lay down.
6:04pm - Dorothy beeps the horn on her wheelchair to get my attention. 45 minutes is what I get for a nap today but it's better than nothing. It will get me through to bedtime. I go out to see what Dorothy needs.
6:05pm - Dorothy is hungry so I prepare her food and water and start her feeding tube.
6:09pm - I ask Dorothy if she would like anything else. She wants the TV channel changed, and for me to take off her BiPap mask so she can suction her mouth (she produces more saliva than she can swallow).
6:10pm - I help Dorothy suction her mouth but the mask is so gross that I have to rinse it at the sink. I do this, dry it and put it back together.
6:15pm - Charlie and Hope come back right as I'm putting Dorothy's mask back on. Charlie freaks out because OMG, HE MISSED US AND HE WAS GONE FOR A WHOLE HOUR AND DIDN'T WE MISS HIM TOO?!?! Hope asks Dorothy if she can rub her feet for her and I write down Dorothy's food/water in the log book.
6:18pm - I make some dinner for myself and for Hope and eat. Some nights I COOK dinner but tonight is not one of those nights so we have a simple dinner of pasta (although I do make the sauce from scratch).
6:45pm - I rinse the dishes from dinner, load the dishwasher and wipe the counters.
6:55pm - I go into my room and think, "Wow, I should tidy up a little" but instead, I open my laptop and read blogs. :)
7:10pm - Dorothy honks her horn again and I go out and see that her feeding is done. I flush her tube, rinse the feeding bag and hang it up to dry.
Some nights around this time Steve and Jordan will come over and we'll hang out in my room and read or sit at the kitchen table and do homework. On this particular night they don't come over though so I'm trying to have some ME time in my room, relaxing.
7:14pm - I visit some more blogs and read what's going on in some blog communities. I plug in my iPod to charge it up and sync some music. I might read a magazine or call a friend.
8:02pm - I hear Hope saying goodbye in the living room so I quickly finish what I'm doing and go out there. She is leaving earlier than usual tonight but I am very thankful because that means an earlier bedtime.
8:05pm - Dorothy is ready to get ready for bed so I take off her blankets, move the pillows under her legs, set aside her white board and TV remote and take off her breathing mask. I help her wipe her face with a washcloth and she wheels into her bedroom.
8:10pm - Dorothy parks her wheelchair and we start the bedtime routine.
8:11pm - I undo Dorothy's wheelchair seatbelt, take off her pants, hoist her forward and position the sling for the lift behind her back. I lift each of her legs one at a time to get the sling in place. I pull the lift up to her chair and hook the straps of the sling to the lift.
8:13pm - I raise her up out of her chair, careful to attach her catheter bag to the lift so it comes too and doesn't pull. I maneuver the lift around and push Dorothy up to the shower chair she uses in the bathroom. I lower the lift, positioning Dorothy as far back in the chair as I can. Once she's resting on the chair, I pull the lift back a little bit and go behind the chair where I grab the straps of the sling Dorothy is in and use my arm muscles (of which I had none when I moved in) to pull her up and back even more in the chair. If she doesn't get back far enough, she slides forward too far and... let's just say I'll have some cleaning up to do later. So we try to get it right the first time. :)
8:15pm - I remove the sling and push the lift back into its corner. I unlock the brakes on the shower chair, wheel Dorothy into the bathroom and position the chair over the toilet. I help Dorothy sit forward in the chair (so she's not slumped against the back of it) and leave the room, closing the door.
8:17pm - I go back in Dorothy's room, park her wheelchair off to the side and plug it in to charge for the night. I raise the head of her bed and adjust the sheets, and do a couple of other things to get ready to put her in bed.
8:21pm - Dorothy taps the buckle of the "seatbelt" on her chair to let me know she's finished and I go back in the bathroom. I flush the toilet, reposition her chair in front of the sink and grab the baby wipes (yes, to wipe her bum). After cleaning her up I empty her catheter bag into the toilet and flush again.
8:24pm - I wash my hands and put toothpaste on Dorothy's toothbrush. I drape a towel over her chest and use one hand to hold her head upright because her neck muscles are getting very weak. I brush her teeth and rinse the toothbrush.
8:26pm - I position a container under Dorothy's chin and she holds it there while I use a water pik to rinse her mouth of toothpaste.
8:28pm - I run a washcloth under hot water and wash Dorothy's face. I pat it dry and put lip balm on her lips. I ask her if she'd like me to do anything else and she thinks for a second, then smiles and shakes her head.
8:31pm - I wheel Dorothy back into her room, take off her "seatbelt," hoist her forward and position the sling behind her again. I attach the sling to the lift and the catheter bag to the sling and lift her out of the shower chair. I move the shower chair into the hallway and push the lift up to the bed. I swing Dorothy's legs around so she is parallel with the bed and attach the catheter bag to the bed frame.
8:33pm - I slowly lower the lift, positioning Dorothy where she needs to be and repositioning the lift as needed so it doesn't come down on her head. When she's all the way lowered I remove the sling from the lift and then remove the sling from behind Dorothy. I push the lift back against the wall and throw the sling over it.
8:36pm - I put a pillow behind Dorothy's head and one under her shins to elevate her heels (to prevent sores). I put a sheet over her and then position various pillows on either side of her (I say various pillows but there is a science that WORKS and we don't stray from it!). :) I drape the comforter over Dorothy and pull her bedside table over the bed so she can reach her bell.
8:40pm - I go into the living room and retrieve the cart that holds Dorothy's BiPap machine, suction machine, and other various things we use. I wheel that into the bedroom and plug in the BiPap machine. Dorothy wants to suction her mouth before putting on her mask so we do that. I put her mask on and make sure it's positioned right before I turn on the machine. (Are you seeing a trend with the positioning of everything?)
8:45pm - I either turn Dorothy's TV on and find something she wants to watch, or bring her her laptop or Kindle, depending on what she wants. I get everything set up for her and start on the rest of the "bedtime routine."
8:48pm - I throw dirty clothes and dirty washcloths into the hamper or washing machine. I put the shower chair back in the bathroom and drape wet washcloths over the faucet to dry or throw them in the laundry. I lock the doors and turn off the porch lights. I tidy up the living room (pillows on couches, blankets draped over chairs, magazines in piles, TV remotes on the coffee table, fireplace turned off, slippers/pens/etc. picked up.
8:57pm - I sit down at the kitchen table to write a note to Polly for the next morning. I let her know of any major happenings over the course of the evening (if Dorothy had a choking spell or if she was extra teary, etc.) and let her know of anything that needs to be done the next day (medication refills, notes for the Hospice nurse, etc.). I tell her things like if the dishwasher is clean and if we had trouble with anything (i.e. any machines acting funny). Basically just anything she may need to know for the next day. I look at the schedule book so I know what's happening the next day and will know what to ask about when I get home from work.
(I am USUALLY interrupted while writing this note.)
9:13pm - I wash my hands, prepare Dorothy's evening meds and give those to her via her feeding tube. She is busy watching TV and in about 10 minutes she will ask me if I've given her her meds and I will laugh and say, "Uh, yeah, you were there!" and she will laugh and shake her head. :)
9:18pm - I initial that I've given Dorothy her meds and start a log sheet for the next day. I initial the meds I will give in the morning and write down that she will have 240mL of food and 200mL of water at 6am. I flip back to the note I wrote to Polly and leave that page open in the notebook so she sees it first.
9:24pm - I let Charlie outside while I pack my lunch. I put everything into lunch-box-sized containers and leave them in the fridge for the morning. I set out anything non-refrigerated so I don't forget it. I call Charlie back in the house and give him a biscuit if he comes (we're working on that whole "come" thing). I wipe his paws.
9:34pm - I wash my hands and get Dorothy's morning meds ready by crushing everything she will take and setting out the liquid meds. I also crush the medication she will take at 3am and set it out.
9:39pm - I go in the bathroom and wash my face and brush my teeth.
9:45pm - I go through the house and turn off all the lights. I check on Dorothy and ask her if she'd like me to turn the TV off when she's done with the show she's watching. She would so I go in my room and put away my laptop and any clothes/stuff lying around. I set out stuff for work tomorrow and change into my pajamas.
10:00pm - I go in Dorothy's room and turn off the TV. She usually writes a question or comment on her white board and we talk for a minute. I tuck her in by pulling her blankets allll the way up to her chin and making sure her pillows are adjusted right. I recline her bed a little bit and make sure she's comfortable. I also make sure her bell is within reach before I say goodnight and turn out the lights.
10:08pm - I go back into my room and think to myself, "We did pretty good tonight!" 10:10 is a fairly early bedtime for us! I read for a few minutes, check Twitter, text Steve and set my alarm for 3am before I turn out my light.
And thus ends a day in my life. :)