Since my husband’s injury in 2011, one of the ways we have been able to thrive is by establishing and keeping routines. It is amazing to me how important daily routines are when caring for someone with a spinal cord injury. You are dealing with a body that has lost much of its ability to do “normal” stuff. Suddenly you are figuring out routines for everyday tasks that you never gave a second thought to before the injury.
One of the best things for your sanity as a caregiver is creating a routine that works for both you and the person you are caring for. During the initial adjustment stage of figuring out life at home with paralysis, a lot of your day may feel like trial and error and that is perfectly okay. This role of caregiver is most likely NOT something you would have chosen, rather it has chosen you and now you have to figure out how to make it work. Give yourself and the person you are caring for a lot of grace during this process and every day really. It takes time to figure out your new normal and even once you have an established routine, life will continue to throw curve balls that force you to make some tweaks and adjustments to your routine. Learn to laugh a lot in the midst of these routines and it will help make them more endurable if not enjoyable even.
I remember when my husband first came home after spending 3 months combined in the ICU and then a rehabilitation hospital. I was overjoyed to finally have him home again under the same roof with me and our three children. However, that feeling went very quickly from overjoyed to overwhelmed. It was just so much to take on and figure out. Sure, they train you in the hospital to safely transfer your loved one, get them dressed, and use a catheter. In fact, for many years we have kept some of the same routines we learned in the rehabilitation hospital 7 years ago because it was easier to just keep doing what they taught us rather than trying to figure out something new. Honestly, at the time I had no confidence in my knowledge to make any major changes from what they taught us.
In the hospital, the nurses, doctors and staff have protocols that they must follow. However, those protocols don’t take into consideration each patient as an individual. It may be helpful when you first get home to use the routine they help your loved one establish while in the hospital, however it is important to know that you can make changes that make sense for your specific situation. Within the last year I have recently joined some Facebook support groups for SCI Caregivers. Some are specific to wives that are also caregivers (https://www.facebook.com/groups/wivesgirlfriendsSCIsurvivorsupport/ ) but some are simply for any caregivers of a loved one with an SCI (https://www.facebook.com/groups/1507220012904280/ and https://www.facebook.com/groups/392564167818812/ ). I have learned so much from these groups even though we were 6 years post injury when I joined. I wish I had joined these groups years earlier, actually I wish I was part of one of these groups while my hubby was still in the ICU and I could have asked questions from the start but honestly the idea just hadn’t crossed my mind. If you are new to the SCI caregiving world, please take my advice and join some support groups. These are great places to ask questions that ONLY people living in the reality of the SCI world will get. And not only do they understand these questions, they are happy to offer advice without judgement! These groups are places you can vent about frustrations, share about victories and build relationships with people who know EXACTLY what you are going through. You will get ideas about how you can change up your routine just by reading posts and engaging in conversations. Trust me when I say, in the SCI world, you never stop learning because just when you think you have it all figured out some crazy symptom or situation will pop-up that will boggle your mind. The people in these groups will be there to sound off to and they will encourage you beyond what you realized was even possible.
It seems as though it wouldn’t make sense to just write about the importance of routines without giving you a real-life example of what our daily routine looks like. Because this blog is read by others outside the SCI world, I will not get too specific about some details, however those support groups I was telling you about are the kinds of places where you can get “embarrassingly” personal and you will not feel embarrassed at all by the responses you get. Here is a basic overview of what our daily routine has looked like over the past several years: (just for an ability reference to anyone new to our story, hubby has a C7 incomplete SCI with patchy sensation but no movement below the nipple line. Hands are affected but his right hand has more function than his left. He affectionately calls them his claw and a half!)
Weekday: (school day for kids/work day for hubby)
6:30am Rise and Shine (we start our day with hubby praying for us before my feet hit the floor)
6:35am Pull pillows out from all around hubby and get him turned onto his back; he sits his Craftmatic adjustable bed up all the way up
6:45am I head to the kitchen to get his protein smoothie and two pieces of sausage ready (this is the same breakfast hubby has every day…he is big on routine!)
6:50am First kiddo goes into our room to have Bible study/prayer time with Dad.
7am Second kiddo has Bible study/prayer time with Dad
7:10am Third kiddo has Bible study/prayer time with Dad and I bring his breakfast to him on a lap tray to eat in bed along with his daily supplements (omega 3 fish oils, cranberry, multi-vit, calcium and probiotic)
7:20am Me and the kids head out the door to get everyone to school. Hubby stays in bed eating breakfast, taking supplements and reading his daily Bible devotion and/or preparing for our weekly home fellowship that he teaches
8:15am I am back home to get hubby up and ready for the day. We start our morning routine which consists of getting in the shower chair, brushing teeth, bowel program (this varies widely for every person living with SCI and you can gain great insight from a support group on this subject), a bidet type experience in the shower, back into bed, dressed and up into the wheelchair for the day. At our most efficient this process takes 45 minutes total. There have been days that have taken longer and some days that we set records and finished in 35 minutes!!! However, I have read stories from some caregivers that their morning routine can take several hours. The time for each person is greatly impacted by the level of ability of the person you are caring for. The more they can do on their own, usually, the quicker the process.
9:00am Hubby rolls to his office (we had an office built onto our house and the door is off of our room so it’s a short commute…LOL). I plug his phone in to the charger, fill up his water bottles and he is good to work. (He was a chiropractor before he got hurt. You can read his blog post about how he figured out a way to work and provide for our family: Here. He used a Foley catheter for 4 years and now has a SP catheter. He uses a leg bag with a flip-flo valve that he is able to drain on his own so this gives him a lot of independence and freedom once he is up in his wheelchair for the day.
1:00pm Hubby takes his lunch break. I make him a healthy lunch often with some raw garlic pressed over the top (this has been the key to no UTI’s for over 1 ½ years now). He has a nice size tv in his office so he moves away from the computer and watches something that he enjoys during his lunch break. I bring his food to him and he eat on a tv tray in his office. When he is done, he will slide his empty plate onto his lap and roll on out to the kitchen to put his plate on the counter or in the sink. He has made some pretty loud crashing noises into the sink but to date he has not broken a glass dish!
2pm Back to work
5:30pm Standing Frame Time- when he was first home and for several years after he went to therapy 2 to 3 times a week. It was very expensive and time consuming. 3 ½ years ago we were blessed to buy a home and modify it to work for our needs. One and a half years after that we built hubby an office to work out of so he didn’t have to work in the corner of our room anymore. When his office was complete, we decided it would be better to spend the money we were using for therapy and buy a Easy Stand Standing Frame Glider. He keeps it in his office facing his big tv. Now he is able to stand up and move his legs everyday for 30 minutes to an hour (depending on his schedule) while watching his favorite sports team(s) (Lakers and Cubs) play or enjoying a show that makes him laugh. He figured out how to get in and out on his own after he figured out how to get in and out of his modified van and learned to drive with his hands.
6:30pm Dinner with the family (on Monday nights he leaves after dinner to go to Man Up at church and on Wednesday we go to our Home Fellowship together after dinner while the kids go to Wednesday night youth group).
8pm We each pray for each of our children and put them to bed
8:30pm Some nights this is shower time but on non-shower nights he will usually stay up in his wheelchair until 9 or 9:30pm. On shower nights he gets into bed, undressed, change out leg bag for bedside bag, transfers into shower chair, rolls in to the shower, showers (he does this part on his own after I put a clean wash cloth on the shower rack and drop the hand-held shower head down to where he can reach it), then back into bed, dressed and snuggled in for some couples TV time. Showers usually take around 45 minutes from start to finish. Sometimes we trim fingernails and toenails after because they are soft and easy deal with after a shower.
9:30pm On non-shower nights this is about the time I help him get into bed. Once in bed we usually watch a few shows that we enjoy. Hubby usually plays some games on his iPad to challenge his mind like Words With Friends or a digital “Poker tournament”.
11:00pm We start our bedtime routine. I bring his toothbrush, flosser, spit bowl and water cup to his bedside. Once he’s done brushing and rinsing, he flosses while I rinse out the bowl and cup (I keep these stored in a cupboard in the bathroom.)
11:15pm I fill up his water bottles to be sure he has water during the night in case he wakes up and can’t sleep (he is usually hungry if that happens so he drinks water to curb the hunger.)
11:20pm I put on his boots to prevent foot drop then I get him turned on his side with pillows tucked behind him, in front of him and between his knees. A few minor pulls and tucks until he is comfy and he is ready for bed.
11:30pm Lights out, hubby prayers for us, good-night kiss and the day is done.
Routines can help you celebrate all that you have accomplished on a great day and they can help you get through the really tough days because after each routine is complete you can say “okay, one more thing done”. Some days we celebrate how quickly or efficiently a particular routine was accomplished and some days (like when either of us aren’t feeling well) routines help us get through the day knowing there is time to rest and recuperate between the routines. We try to look back and reflect on how far we have come from the daily routines we had 7 years ago compared to where we are today. It helps us celebrate how far God has brought us and gives us hope for how much farther He will bring us in the years to come.
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