Do you think it is appropriate to ever involve your children in your SCI care?
If so at what age and to what extent?
Trish, I just saw this.
My kids were older than yours when I got hurt. My daughters were 13 and 15, and my sons were 18 and 21. The boys were in college in Boston, where I was in the hospital. It made it nice in that they were able to visit almost everyday. My youngest son spent his first "spring break" from college staying home to take care of his sisters, while my husband spent the time with me in the ICU. My 15 y/o daughter spent a couple of nights with me in the hospital, alternating w/ her dad, when it was decided I shouldn';t be alone at night, due to what I now attribute to ICU "psychosis". Then for the next 12 weekends, the girls came up with their dad. They spent time with me in PT and OT and learned a lot about what they could do. Same with the boys when they stopped by in the late afternoons or early evenings. My mom and I had figured a way to wash my hair in the sink in the hospital. It was rather hysterical the first time I asked one of my son's to help, but aside from needing a dry shirt when I was done, it worked out fine. So that is where I am coming from.
RE "SCI" type help .....
Because they were so involved while I was in the hospital, it seemed obvious that for me they would help me at home. The girls both did ROM with me for a long time, until I had it figured out for myself. I don;t need dressing help, but they are the ones I call on when I have transferred too many times, and have just about transferred out of my pants. My youngest daughter came up with the solution to one of my shower transfer issues, and helped me perfect it. I would dry off and put on a robe on the shower bench, as an attempt at modesty, but that was all it was. We had a "lovely"
mother-daughter bonding experience in the hc stall in a ladies room recently. But this isn;t typical.
As a para, I really don;t need help with any medical issues, or B & B, on a daily basis, so I can;t address that.
But everyone was taught how to help me transfer, which was still necessary in the early days. Any of which may be called on to help if I end up in a swishy sofa, a strange car or more recently on an airplane seat. We went camping recently, and my younger son and daughter transferred me in/out of bed. (I wish rehab had taught us how to transfer, the 2 person lift like they do on the airplane ..... it is much easier that what we have attempted sometimes in the past with the slideboard.) They were really good about helping me turn early on, and settling me with pillows too. (I am trying here to relate to things that your husband needs daily, that as a para I only needed help with in the beginning).
My kids were my primary chauffeurs in the early days too, and are still
called on often. (It is easier to go out w/ help ... especially if I
have multiple stops.) Yours aren;t old enough yet, but keep that in
mind ...... guess who can drive him to appointments, or go shopping
with him in a few years!!
I am trying to remember your kids ages .... preteens I think? I am guessing they are already involved in fetching and carrying and such. Turning pages if he is reading to him, and moving his piece in a board game. I guess it is kind of a sliding scale as to what actually constitutes "sci" help, and what is just "normal" help. The kids next door probably bring their dad a drink from the kitchen. I doubt they put his shirt on for him, and I am sure they don;t change a catheter. How much more involved they get in his care will probably have to be on a sliding scale too, as to what works for your family. Kind of like getting him dressed every morning before school at age 8 is definately too much, but doing so once in a while when they are 12 or so and everyone is in a rush is a different story? Some help can be turned into good time too. Helping you with ROM, leading into doing it themselves is a good time to talk, or read together. I used to find that so with my daughter. I would read aloud, or help her study during that time.
Personally, I am thinking too about the point that the spouse shouldn't be the primary caretaker (yea, I know, hard to follow this rule, but bear with me). I would say that is true for kids too. They are supposed to be his sons, not his nurses. (You just have boys, right? Apologies to your daughter if I am wrong.) So I think the nitty gritty care (B&B, vent, bathing and such) should be avoided.
Another thing I would be careful of, is you don;t want to turn Dad into a "chore". If it turns into something you have to nag them about, it is too much. Otherwise, where the line is between "helping your dad" and "being his nurse" may have to come from your kids. If either you, your husband or kids are feeling uncomfortable, or that it is effecting their relationship, it is too much.