What level and severity of spinal cord injury a person has will determine how much assistance they will need for every day living. Since I can’t move anything other than my head, or breathe, I need assistance 24 hours a day. This is a great opportunity to meet and work with a lot of people, but you need to remember they are working for you. The saying of “treat others as you would want to be treated” is very true, especially when you have 24/7 assistance.
If you are just getting used to having other people help you or a family member with personal needs, it may take a while. Going from being completely independent to needing help for all activities of daily living is a big change in life. The person receiving care needs to be assertive to his or her needs and how to get them done while remembering the person helping needs to be respected as well. It is best to establish clear lines of communication and what is expected of a caregiver while they are working. Every aspect from what needs are to be met and how to interact when friends and family are around should be considered. If something is done that is dangerous or against your wishes, that caregiver needs to be informed about the problem and how to fix it. Always be sure that another person is around when discussing incorrect behavior with the person in question and document such instances well.
Depending on funding sources, a caregiver may only have only a few hours, or less, with you and will need to carefully document everything that was done. If you do have a short time frame to get multiple cares done, make sure you’re ready to start when the caregiver comes. This will help make sure your needs are met and show respect for his or her time.
The line between personal relationships and caregivers, often nurses, can sometimes get thin, but it’s a boundary that needs to be kept in mind for safety and independence. A caregiver can be a friend, but they can easily step out of bounds and create situations that are not as you intended. If proper boundaries are set and followed, having an assistant can allow for greater independence and a full life.