(To see the first post in this mini-series, check out When And How Dan Became My Caretaker)
Dan and I have been married for almost four years now, and together for almost eight and a half. (A sappy look at our relationship: My Personal Romantic Comedy.) When we first met, I had a few health issues, but I was relatively healthy (and quite active). Unfortunately, in the past five years, my health has started declining in leaps and bounds: it will be stable for a bit, then suddenly I’m blindsided by new symptoms and pain, then we’ll work hard to stabilize it and it will happen all over again. Through all of this, Dan has been my primary caregiver. Yes, it’s stressful, and it’s not always perfect, but it actually works relatively well for us.
I figured a good way to give you a glimpse into what this entails, would be to outline two days of our lives. These days are an “average” day and not a “real” day because our days actually vary quite a lot. Dan’s job can have him working some weird hours and our schedule needs adjusting when that happens. The weekday model is based on what Dan’s “ideal” (his words) schedule would be: working from 7:30am until 4:30pm or 5pm. (They work 9 hours Monday thru Thursday, and then 8 hours every other Friday to get the full 80 hours in for two weeks.)
We’re going to assume I have one medical appointment (that Dan does not need to attend) in the afternoon for the sake of this post as well, which is a fairly normal occurrence. Some of my appointments require Dan’s presence (or we’d both prefer it that way) and that also throws our schedule off. For appointments I can do on my own, I actually try to schedule my appointments in the mid-morning, but the rest of my routine also gets thrown off by them, so I put this one in the afternoon where it messes with my schedule the least.
6am: Dan wakes up, showers if he needs it (sometimes he showers at night), eats breakfast, packs his lunch, and does any dishes that were left from the night before.
7am: Dan feeds the cats their breakfast, then he comes and wakes me up to kiss me goodbye. I fall back to sleep. Dan goes to work.
10:30am: My alarm goes off. I hit snooze (5 minutes) and try to wake up, usually I fail and drift off for the five minutes. Slowly, I wake up enough to put on my glasses and roll onto my back (this takes several “snoozes”). Then I grab my phone, play some games and move around a little to wake up my body and mind.
11:30am to noon: I take my morning medications, put on my lounge clothes and stumble downstairs. I get myself some breakfast and plop on the couch. Odds are, I’ll turn on the TV and watch something less-than-exciting. (Lately, I’ve been watching a few paranormal shows or HGTV. Sometimes it’s GSN because I don’t care to watch the others.) I will, likely, leave the TV on all day because I like the “company” it gives me – I promise I’m not a dog!
12pm (noon): I feed the cats their lunch.
1:30 to 2pm: I make my own lunch. Lately, lunch has been an apple with sunbutter (sunflower seed butter). Sometimes I eat leftovers, but usually it’s the apple. We have an apple slicer, which is my preferred method for apple slicing… though it’s getting dull, so it’s been easier to use a knife at times.
2:30pm: Time to get ready for the appointment that is at 4pm. I get up off the couch and go upstairs. I pick out my clothes and get dressed in “real people” clothes (jeans and a tee shirt, usually). If I’ve thought ahead and brought my clothes downstairs with my morning stuff, then I’ll start getting ready closer the 3pm for a 4pm appointment. I have to rest a moment on the bed upstairs to let my heart rate and blood pressure even out a bit better. Then I come downstairs, with my lounge clothes to make changing back easier, and gather up everything I will need for the appointment, including any paperwork. I also fill my water bottle and grab a book/magazine for the waiting room.
3:30pm: I turn off the TV and leave for my appointment. I have to go down another flight of stairs to get out of my front door. I leave for all of my appointments at least 30 minutes early, even if they’re technically just 10 minutes away. Some of my appointments require I leave an hour before. I can still drive myself, thankfully.
4pm to 5pm: I’m at my appointment. My hips and back are hurting from sitting up and wearing jeans. Luckily, I’ve found some jeans that are far more comfortable than my older pairs. Depending on the appointment, sometimes I’m sore from what the doctor has to do. The office lights have probably caused me to start having auras, because fluorescent lights and I are not friends.
5pm: I get a text from Dan telling me he’s on his way and asking if he needs to pick anything up on his way. At the beginning of the week, he has to pick up prescriptions for me. In the middle of the week, or end, he sometimes needs to pick up groceries. I tell him that I have prescriptions ready, and that I’m also on my way home so I’ll see him soon. (His work is about 15 minutes from our house and he drives past both the pharmacy and grocery store on his way home.)
5:30pm: I get home, go up the stairs from the front door to the living room, change back into my lounge clothes, say hi to the cats and use the restroom. Then I lay down on the couch, while trying to remind my kitties it is not time for their dinner food yet! (That is a hard message to get through.) Sometimes I’ll turn the TV back on, it depends how far away Dan is.
5:45pm: Dan gets home. He says hi to his supine wife and the cats. Then he goes upstairs to change out of his work clothes, because the cats’ claws get stuck in his slacks too easily, and is followed by his little grey shadow (Mikki is completely obsessed with him). The grey one will yowl at the bedroom the door the whole time, because the bedroom ate her human! (They aren’t allowed in the bedroom due to my cat allergy.)
6pm: Dan asks me what the plan for dinner is, or looks at the list we sometimes have prepared. Sometimes he needs help remembering how to make something, most of the time he can do it completely on his own. He’ll feed the cats their dinner time food. He’ll start making dinner. If he needs help, I can usually get up and go help him a little. Sometimes, I’ll just go sit on the stairs (the ones from the bedroom come down right next to the kitchen) and talk to him or verbally help with a recipe.
7pm (or whenever dinner is ready): Dan sets up some tray tables in front of the couch so we can watch a show or movie while we eat (at 7pm it’s a show, unless it’s the end of the workweek). Occasionally, we’ll eat at the dinner table and play a board game, but those chairs have been hard on my back as of late.
8pm: After dinner, I lie down again while Dan takes the dishes to the kitchen. He’ll collapse the tray tables and put them away, take the dishes into the kitchen, load the dishwasher, put away any leftovers, and straighten up in the kitchen a bit. Sometimes, he’ll do some dishes before bed.
8:30pm: We usually have a dessert of some sort. The only dessert I’ve really been able to consistently have on this new diet is an “edible cookie dough” recipe I found online and tweaked a little to fit my diet. It’s a great “something sweet” for the evening! I might have a little bit of dark chocolate or a strawberry too. This is usually when I remember I need to take my Visbiome.
9pm: The kitties get their bedtime wet food and we’ll start getting ready to go upstairs (finish our show/movie, gather up any other dishes from the day that hadn’t made it to the kitchen yet, get the dishwasher ready to run, finish my diet log, get my doTERRA diffuser ready for the bedroom, grab anything that needs to go upstairs, etc.) We’ll go upstairs and get ready for bed, minus putting on our pajamas. I take my nightly pills before I brush my teeth. Then we go sit out in the hallway outside the bedroom to say goodnight to the cats. Dan will check on their water bowls and refill them if necessary.
10pm: We will finish our goodnights to the kitties and go back into our bedroom. We’ll finish getting ready for bed, including our pajamas this time. I’ll get in bed, and Dan will brush my night guard for me (I have TMJ/D and grind my teeth). Then Dan gets in bed and passes out cold, while I lay there and play games on my phone for a bit.
12am (midnight) to 1am: This is usually when I’m finally sleepy; I’m always tired, but I can’t get to sleep very easily if I’m not sleepy. I will wake Dan back up, ask him for any meds I might need (sometimes I need Zofran or Benadryl to get to sleep, sometimes Tylenol is necessary). Dan comes around to my side of the bed, gets my phone plugged in if I didn’t do it already (it can hurt my back to get my charger off the floor), then opens the Calm app I have on my phone. I select my nightly meditation, spend far too long organizing my pajamas and sheets so I’m comfortable, and he turns off the light and starts the meditation for me. He gets back in bed, says goodnight to me, then goes back to sleep. I fall asleep slower than he does, but almost always get to sleep before the meditation ends. (I used to take hours to fall asleep, so it’s amazing that I fall asleep so fast now!)
4am to 7am: Some time in here, Mikki comes and yowls at the door until someone acknowledges her. She wants either food or attention. If I physically get up, I won’t be able to get back to sleep, so Dan has to deal with her. If it’s before 6:30am, she gets squirted with the water bottle until she goes away. Otherwise, Dan gets up and goes and feeds the cats their breakfast. (The cats have automatic timers that open between 3am and 5am to give them a feeding overnight.) Sometimes he’s able to get back to sleep after feeding them, sometimes he’s not. I have no idea what he does with his time in the morning if he stays up, but he usually takes care of some quiet stuff around the house or starts some laundry.
10:30am: My alarm goes off, and it’s the same struggle it always is for me to get up (see the routine in the weekday).
11am: I text Dan and tell him I’m awake and ask if he can please bring me some breakfast. He will bring my cereal (or oatmeal in winter) upstairs for me. It’s way easier that way, because it saves me energy and lets me wake up a little slower without getting faint from lack of food. On Sundays, he’ll give me my pill box so I can sort out the weekly pills. He’ll hang out and chat with me a little bit, or he’ll go finish up whatever he was doing downstairs. (If I need to shower, I’ll shower after breakfast and everything else will be pushed about 30 minutes later in the day.)
12pm: By now I’m usually dressed and have managed to get downstairs. I go to the couch and sit or lie down. It depends on how bad of a day I’m having with my pain as to which one I do. Dan will feed the kitties their lunch food.
1pm: Dan asks if I want lunch, and he’ll make a lunch for us. Sometimes, it’s still my main standby (apple and sunbutter right now). However, since Dan is making lunch, sometimes it can be more elaborate. We’ll eat and chat.
Grocery Day: We’ll spend the next few hours figuring out our grocery list and buying groceries (this takes until dinner time, usually).
Home Day: We’ll figure out what chores/cleaning needs doing and get as much of it done as possible. We also try to hang out at least a little each weekend. Usually, hanging out is playing a video game if I can’t get off the couch. We both love tabletop games, though, so sometimes we’ll play one or two of those if I can tolerate sitting at the table! Hanging out is my favorite part of every weekend, but it never seems to last long enough. If I’m feeling fantastic, sometimes we’ll go run “fun” errands (like buying stuff for the garden/porch) or we’ll go for a drive or to the movies. Our “Home Day” is also our “Date Day” and we try to make the best of it, however we can. Throughout the day, I rely heavily on Dan to get me beverages and snacks when I need them. If I need something from upstairs, he has to get it for me.
4:30pm to 5pm: We’ll get started on dinner (the time depends on what’s for dinner). I can usually help if it’s been a restful day. However, if I’m having a terrible day, or if it was Grocery Day, I have to go rest on the couch instead. We try to make our more elaborate dishes on Home Day.
6pm: We’ll setup trays to eat and watch a movie, or we’ll get the table ready to eat at while we finish our game. Dan feeds the kitties their dinner food.
The rest of the evening goes pretty much exactly how the evening goes on weekdays. We hope to be in bed by 10, but it usually ends up between 10:30 and 11pm. Thankfully, we’ve been getting much better and can usually get closer to 10:30pm on “normal” days!
There you go! This is what two of our average days look like.
Do you have any questions for Dan/me/us?
I want to interview Dan about our relationship and the patient/caregiver dynamic. I cannot come up with all the questions on my own and could really use your help! Please comment below!
I hope this has helped with understanding the dynamic a little better! Make sure you checkout the first post in this mini-series to learn more about how Dan became my caretaker (and when). Obviously, our specific flow has taken time to develop, and what works for us may not work for you and your significant other. It’s really about finding what works best for everyone involved, and for you that may mean hiring a caretaker outside of your personal relationships. For now, this is what works best for Dan and me! (Also, you will have to constantly revisit your dynamic as your conditions/symptoms/abilities shift and change.)
Comment below! Let me know what you think and what you’d like to know!