Personal care attendants, or PCA's, are a necessary part of life for many people with disabilities. A PCA allows you to remain in your own home instead of a nursing home and allows you to be an active member of your community. However, having to rely on someone else to meet your basic needs can be difficult and frustrating at times.
Setting a Routine
It can be a very confusing time when you've just hired your first personal care attendant. If you have been used to having your family members who know your routines do your care for years, you might just assume that a PCA will automatically know how to do things the way you want them done.
This is most definitely not true.
If you like to get out of bed at a certain time, you have to let your PCA know. Barring any unforseen circumstances, such as traffic, that will make your attendant a bit late, you should be able to get up at the time you want. If you need to be ready to leave for work or school by a specific time, let your attendant know and keep them focused on the task at hand or it's you who will be late.
If circumstances do arise that make your attendant a few minutes late, try to be patient and a bit flexible. When they arrive, let them know you understand that they are running behind, but that they need to get to work now so that you can start your day. If the circumstances are severe enough that they will be a half hour or more late, call your backup attendant.
Ask For What You Want
It can be easy to slip into a routine of simply letting your PCA do things the way they want to or find easiest. Even if you have fallen into this routine, it is not too late to change.
Don't be afraid to ask for what you want and tell your attendant how you want it done. Be forceful and authoritative - after all, you are the boss - but not nasty or rude. Your attendant is an employee but also a person and deserves to be treated with respect.
If you prefer your laundry folded a certain way and your attendant falls into the routine of the way they do it at home, tell them. If they leave certain things out of your reach when they leave for the day, let them know. If they react negatively, call their immediate supervisor. If they continue to do things their own way or react badly when a supervisor talks to them, it may be time to start the search for a new attendant.
Make Sure All Your Needs Are Met
The severity of your disability dictates how long you will need a PCA during the day. Someone who is fairly independent may need a PCA for only an hour or two a day. Those with severe disabilities may need round the clock attendant care.
If you fall into the latter category, chances are that you still need some time alone. After you and your attendant have met all of your needs and taken care of everything that needs to be taken care of, don't be afraid to ask your attendant for some alone time. Stay in the living room while your attendant cleans the bathroom, for example. Or have your attendant take a break so that you can have some time by yourself. Just make sure that your PCA stays in earshot or has a cell phone in case you need something.
Sources
Megan Abrams - I have lived with the effects of a childhood stroke for more than half my life and offer a uniquely personal perspective on disability.
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