Comunidad de información y apoyo para las personas que viven con parálisis y sus cuidadores en español.
What I wish my family understood
Since his SCI my son requires catheters to pee. I am my son's sole caregiver, this limits me to how long I can be away from him. Any thing I do falls into the narrow window of 8:30am to 10:30am while he is at school. That's when I go to the local grocery store (we live in a small town, not much here except a few stores). Because of the limited time I haven't been to my own doctor since my son's SCI. If my mother or daughter would only learn to cath him I would have that extra needed time to schedule an appointment with my doctor (haven't been to the doctor since early 2017). I've tried to get them to take a more interested and involved role in his care but they are reluctant to do any 'hands-on' care.
This worries me because if something were to happen to me there would be no one within the family to care for Charlie and I fear what would become of him. They (family) say "oh don't worry, we'd take care of him" - but how could they if they won't even learn to cath him! They don't even take seriously his need to be cath'd every 3-4 hours.
Wish people understood that actual caring is more than just mouthing the words!