What’s the role of a caregiver after a spinal cord injury?

A caregiver would be someone who provides assistance to a person with a disability who has a functional need, meaning an activity of daily living—dressing, bathing, eating. They cannot accomplish that themselves, and they maybe can’t manage their bowel and bladder, so another person has to come in and help them do that. Now a caregiver can be, in the way I look at it, any type of person. It can be a family member, or not. It can be a person issued by the state under a state Medicaid program, or not. It can be your next door neighbor who wants to help you out at maybe no cost. It’s the care you need that comes from someone. So it can be called an attendant, it can be called a personal care assistant. Often I think people think “caregiver” means the family member is going to do it for free, and that isn’t necessarily the way it has to be. The person who assists with your care can be any range of people. And for a lot of reasons family members may opt out of doing that care, especially married couples in terms of their marital relationship that is not the thing for them. In the case of mothers, they’re probably going to be more likely to jump on caregiving without stopping and thinking they can still be mom if somebody else does those bodily-function helps.

Theoretically you want the caregiver to promote the independence. You don’t want them to wait on the person hand-and-foot and a lot of times, in my thirty years of working with spinal cord injuries, that happens a lot. A caregiver is there for support. A lot of times it requires more support depending on the person’s injury level, how high it is—if they’re a tetraplegic obviously they’re going to need a little more support because there are a lot of things they can’t do by themselves. There’re also a lot of things they can do, and we try to encourage the family members. When our case managers go out and talk to them, we try to encourage them to get the person to do as much as they can for themselves. However, that’s not always the case. A lot of times we notice that husbands and wives, if they don’t have that great a relationship before the person sustained their injury, it gets worse after that. A lot of times they either can’t deal with it and they’re like, “I’m out of here.” Or you have a family member who thinks that it’s just so much easier for them to take care of everything instead of waiting for the person to try to put on their pants by themselves, or try to do their other ADL’s. And to me, that’s the part right there where they destroy the person’s independence and a lot of times that person gets used to it and is like, “I don’t have to do anything myself, they’ll take care of me.”