I’ve realized that unless you are a caregiver, especially of someone with a spinal cord injury, you really have no idea what we deal with on a daily basis. It’s tough. And that doesn’t even being to express it…
I’m exhausted. It’s 10 pm and I’m finally in bed and I’m exhausted and can barely keep my eyes open. It’s tough knowing that I have to do what I did today all over again tomorrow. and the next day. and the next day. and the next day for years and years and years and years… until the quad gets the ability to be independent.
My day starts at 5:30 am unless it’s a Tuesday, like today, and then it starts at 5. The alarm goes off and every day (but Tuesday), I’m up. Immediately. There is no snooze button for me… I get up, turn the TV on and hit the shower. I then get dressed, open the shades in our room, turn on the lights and unlock the front door for our nurse. Then I work my way through the house and open the shades. I thought about it this morning as I did it… Since I’m the “one in charge” and the person who would have to deal with any emergency situation (hello, burglar…), I close all the shades at night. So, in the morning, when light like this time of year, I systematically open the all as I walk through the house. I get to the kitchen and turn on the coffee pot and the TV and the fire place to take off the chill. I close the kids door and putter around on the internet for a few while my coffee brews and I catch up on some of the news. I then do whatever needs to be done… I made lunches for the kid and the quad. I empty or fill the dishwasher. I fold or start a load of laundry. And I clean where I can and get dinner out for that night (maybe even making it since the crock pot has turned out to be my best friend!). And I start going through the list of what I have to do that day in my head.
Once the kid is up, we have a quick cuddle and then I finish getting ready while also getting her ready. I make her breakfast and somehow get her to get herself dressed, while getting myself ready and getting her stuff together. Once the quad is ready, I can go back into our room and finish whatever I need to finish.
And then we’re off… I drop the kid off at school and the quad and I drive to work. 40 minutes later… I drop the quad off and then drive to work. I work. All day… If the quad needs something, I leave work. If not, I work until it’s time to go home.
I pick up the quad. 40 minutes later… We pick up the kid. Once we get home, the real fun begins since the nurse only comes in the morning. So it’s just me.
I, for some reason, am tasked with bringing EVERYTHING into the house. My stuff, the kid’s stuff, the quad’s stuff. Every evening… EVERY EVENING. I unpack my stuff and unpack the kid’s stuff and figure out what she needs. I then start dinner. While cooking, I get the quad a drink. and it’s back and fourth from whatever I’m doing to whatever the quad needs. You need a sip? Hang on. There you go. You want a carrot? Hang on. There you go. You want some wine? Let me pour us both a glass. Think about what you do when you get home and watch your spouse… Now imagine you have to do it all for your spouse since he or she cannot… but you’re also doing it while trying to do whatever it is you need to do. No, it’s not easy. It’s hard to explain. Just when you’re in the middle of something, someone needs something… but it’s not like when you’re kids ask you for things. It’s very hard to explain…. It’s like having a toddler. forever. the kid is old enough to get things on her own. The quad cannot… and hasn’t been for five years. It’s tough.
Dinner is ready and I feed myself AND the quad. He cannot. So I have to help him. I used to just feed him and forget to feed myself. Trust me, that changed quickly… It’s to the point where I eat now and forget him… so he reminds me. So, in addition to helping him, I also get to listen to him telling me how to do it… No, no spouse thinks that’s great. ever.
We finish dinner and I do the dishes. every night. I cook. I clean. Then it’s time to read. The quad takes this one with the kid so I took some time tonight to work on my website. Yes, I’m making website! But I failed since apparently it wouldn’t work with the domain I already purchased… 30 minutes wasted… Books are finished, time to cuddle!
This is my favorite part of the night… cuddling with the kid. Her stories kill me. She blabs to me about her day and we hug and cuddle. It’s the only time during the day that I get to hold someone and have someone hold me back… yes, one day she’ll need some serious therapy, I’m guessing! I shall pay for it.
Tonight, the quad came in and reclined his chair back and fell asleep… So, I left and folded more laundry, took stuff out for tomorrow night’s dinner and started the dishwasher. And then picked up the house. And did a load of laundry since I’M ALWAYS DOING LAUNDRY. towels… bed baths cause a lot of dirty towels… And now I rest… wait, nope, the quad needs help.
The quad woke up so I helped him get out of her room (his chair magically turns off…). And then I helped him get to bed. We have a ceiling lift so I can save my back but it means that I have to put his net behind him, yes a net, and lift him up using the lift. I then manually move his 600 lb chair into the living room out of our room. And then I lie him down. I then have to roll him and undress him and roll him and give him 300 pillows (slight exaggeration…) and get him comfortable.
And tonight! Tonight was program night. Yes, BOWEL program night. Ah, the life of a spousal caregiver for someone with an SCI. So romantic. Who else did you think did it? No, our nurse does not. They aren’t trained. FYI, she’s not a nurse but a CNA (although wonderful and amazing but not an RN but I call her a nurse anyway…).
So, I did that and then, finally, was able to get myself ready for bed. The only time I sit and relax after I get home, is when I crawl into bed. and even then, I’m back up doing something else for the quad. How can I say no? I cannot. He needs water. I get it. He needs meds. I get it. He needs a readjustment of a pillow. I do it. No matter the time… middle of the night? yes. 10 minutes after I’ve fallen asleep? yes. It happens. Every night… I haven’t slept through the night since I was pregnant.
The quad is snoring. FYI, the doctors told me he’d NEVER snore. I cheered. He didn’t for two years. And then it started. and as wonderful as it is since it means he has more function and the doctors were wrong, HE’S SNORING AND HE’S LOUD!
I am the first one up. I am the last one to bed. Every. Single. Night.