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Thread: What is "Independence" for a C4 Complete?

  1. #1

    What is "Independence" for a C4 Complete?

    I wasn't sure whether this belongs in "Care", "Life", or somewhere else.

    I am a 31-year-old C4/5 Complete quad, and I've been injured for 12 years. I've recently been debating whether I can improve my day-to-day set up.

    To get through school and my early-injury days, I realized that not only were caregivers necessary to help with my ADLs, but there were also a few things that needed intermittent help, or would best be done by someone living with/near me. One of those things was having someone in the house overnight. Once I'm in bed, I can't do anything for myself. I have a button that lets me call/text with my phone if needed, but I also need someone who can rearrange my legs if needed. I sleep on my back and get by without turning, but occasionally my legs spasm overnight, and they need to be repositioned to avoid pressure sores. In college I filled this need by living with roommates in dorms or off-campus. It worked great! After entering the real world, I'm asking myself whether this is still best/necessary?

    The other big thing that I need help with is dinner. My caregivers make breakfast, and I took/take lunch with me to school/work. At school I would also eat dinner in the cafeteria, but there's no cafeteria to go to now that I've left school. A roommate again seemed like the best option to fill this need. Instead of paying someone for an hour or two of work every day, I find a roommate who is willing to exchange a hefty discount rent (~$600-$800) for helping with dinner and being home overnight.

    I've been out of school for three years now, and keeping reliable roommates is proving to be difficult. I live in a small town with a low cost of living where most of the people who seem to be interested in my proposal are younger people who don't have their life together. Inevitably, after 3-6 months my roommates find themselves with new schedules/responsibilities that make them unable to stay in my house and help.

    My big question is what do other people in my situation do? If I was married or had a cohabitating girlfriend, I would have no issues. My mobility falls right in between complete independence and complete dependence. I need so little help from roommates that I could almost live independently, but these few things (overnight live-in, dinner) are crucial to my survival!

  2. #2
    Put two pillows under your knees, iam like you can't do much when I am in bed and just tough it out on my back. Curious as to what you do for BC, showering etc? I'm starting to realize that no two injuries are comparable. Meaning you can find a walking C3, to a transferring c4 to a pretty dependent c5 and everything in between. So it really doesn't matter what other people do.

  3. #3
    Do you have a meals on wheels program in your area for older people? They usually will serve disabled folks as well

  4. #4
    Unfortunately, most Meals on Wheels programs do not deliver meals at multiple times daily. If you are on their twice daily plan, they will deliver a hot lunch and a dinner at the same time, with instructions on how to refrigerate the dinner and warm it up later. They also do not help you eat the food, whcih I assume you are unable to do yourself at the C4 level.

    I would encourage you to continue to look for a live in type attendant arrangement that will work for you. Instead of recruiting a roommate and trying to talk them into doing this stuff for you, look at hiring an attendant with the provision that part of their compensation is provided room and board. Also, try recruiting from the middle-aged woman worker pool. Many women who have gone through divorces and have no job training/skills or who have left an abusive relationship can be perfect attendants, and they often also need a place to live. You may also need to consider relocating to an area where there are more prospective employees.

    If you have the funds, a turning mattress or bed might be an option for you at night. There are several on the market. They are not cheap, but can replace having to have someone to help turn you at night. As far as accessing your phone, who do you call now if you have AD or some other emergency during the night? That would be my biggest concern.

    Independence is being in charge of your own life and making the decisions about how you live, how your care is provided, etc. You can be very independent with good planning, in spite of a high level SCI.


  5. #5
    James – I sleep on my back with a pillow under my calves (to keep my heels up), a pillow propping my feet up against the footboard (to prevent foot drop), and a rounded pillow under my knees (to keep my knees from hyperextension). My legs occasionally spasm overnight and move out of position, which is when I need help rearranging them. I have aides that help with the other things you mentioned.

    I'm familiar with Meals on Wheels, but I wasn't sure about the qualifications for such a program. How widespread is Meals on Wheels? Does it usually exist in small towns? I have some arm mobility and can eat dinner on my own after getting help with attaching my fork to my hand. I could probably learn how to do it myself with a lot of practice, but I at least need help with taking food out from the fridge, heating it up, etc. I feed myself independently.

    And yes, my largest concern in the middle of the night is in the case that an emergency like AD, fire, or tornado should arise.

    With respect to KLD's definition of independence, I'm able to manage that very well. I organize and manage all of my care, find my own roommates, and take care of all of the minor details that make everyday life run smoothly. It's just difficult to see how close I am to living independently (i.e. on my own/without a roommate), but still have to deal with the headache of finding a roommate/live-in. It's not an impossible task, but I wanted to see if there were any fresh approaches in the spinal cord injury community in the recent years.

  6. #6
    Get boots for night help prevent drop foot, And I don't usually worry about this but I'm sure will help with bedsores on heels. If that's independence an Orangutan. How is relying on other people constantly, people that could be sick or just not show up, do it half ass, just not do it etc etc control over one's life? I'm in the same boat but I relies that independence is not possible, at our levels without some kind of functional recovery.

  7. #7
    Avoid putting pillows just behind your knees on your back. This can lead to knee and hip flexion contractures, and also, if compressing your superficial veins in the back of your knee, increase your risks for DVT. Support the entire lower leg with the pillow instead, and "float" your heels off the bottom of the pillow to avoid pressure (if possible). Well designed boots will also help to float your heels.


  8. #8
    I don't want to hijack this post, but I too sleep on my back, but have a 9" thick 36" wide and 22" deep pillow made from memory foam. My legs, from just below the knee, lay atop the foam. I have a few pillows as well atop the foam that keep them at the correct angle (I've done this for about 6+ years.)

    This works for me... but is this safe SCI-Nurse?

  9. #9
    Quote Originally Posted by Scott C4/5 View Post
    This works for me... but is this safe SCI-Nurse?
    Do your heels stick off the end of the foam piece? As long as there is no pressure on the backs of your knees, this should be fine, but turning is important not just for your skin, but for your lungs and kidneys as well. Keep that in mind.


  10. #10
    Meals... You can warm up anything in a microwave that is set up on a counter or table that you can access. I make up a couple of main dishes, or soup, etc. at one time-enough for 6-10 servings. In the morning before they leave, I have my help cover with saran wrap and place on top fridge shelf. I balance it on my thumb and index finger to get it out of the fridge. Without wrist movement, a person could also make a cradle for a plate, bowl..with handles and slide wrist through it to lift (I use sacks from the grocery for heavy objects). Pop off the saran, nuke it, slide the plate (I use white plates that can get hot. They probably make microwavable hard material/plastic ones that don't) out of the microwave... slide onto towel if needed.

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