Finding someone who can help you with your personal care can be a challenge. Some individuals will have access to professional caregivers through their insurance or another payor but this is the exception. Others will rely on family members. Some will be able to hire a personal care attendant through their own resources.
Finding an individual who is knowledgeable about paralysis is a challenge. Generally, education about care is provided by you or your family member. It can be challenging to hire someone. Often, the personal care attendant does not understand the complexities of the needs of an individual with paralysis or even if it is explained, the actual actions are unfamiliar to them.
The Paralysis Resource Guide is a resource about all information regarding living with paralysis. It can be used as a structure for questions and procedures for care. Your free copy from the Christopher and Dana Reeve Paralysis Foundation is available here.
Conflicts arise when the personal care assistant does not understand the importance of maintaining your schedule, especially for intermittent catheterization or bowel program times. Even preferences that appear to be nitpicking can be essential to your independence. For example, the personal care assistant may not realize the importance of using a particular type of straw, placement of your joystick for optimal mobility, or items to be located at a particular height. The list of specifics goes on and is particular to each individual with paralysis. Even showing up on time instead of being a few minutes late can lead to the stress of wondering if they will show up at all.