Independent living can be achievable for many adults with muscular dystrophy (MD), but there are various factors to consider to ensure you get the best care and help available. Often the greatest challenge is finding and managing your personal care assistant (PCA), but according to the Muscular Dystrophy Association and Living with Attendant Care, there are resources available to help with this task.
Criteria for a personal care assistant
A PCA could be anyone from a member of your family to a registered nurse. The level of medical expertise needed will depend on your needs. A registered nurse (RN) can provide a high level of medical care including drawing blood and administering intravenous medications and can also provide a patient assessment and home care plan that someone else could follow.
Licensed practical nurses (LPN) can help with general nursing care but may need to be under the supervision of an RN or doctor to administer medications. Certified nursing assistants (CNA) are often trained in CPR and first aid and can attend to basic healthcare if supervised by an RN or CNA.
You will need to assess how much help you need, whether it’s help around the house or you need assistance with getting dressed, bathing and changing colostomy bags.
Where to find a personal care assistant
There are different ways to begin a PCA search: you could advertise the role through an employment agency or use a company who will provide a PCA for you.
Home healthcare agencies employ PCAs and can provide a PCA to match your requirements. More often than not, they will pay the insurance and wages of the PCA directly and bill you for their services (meaning less paperwork and stress for you). However, you may not have much input into the person they choose for you and they may insist on a minimum number of hours each week.
Employment agencies will have PCAs on their books and you will be able to interview prospective PCAs yourself and set out your own terms and conditions. However, you will be responsible for paying their wages and insurance and there will be no backup if your PCA is sick or on vacation.
Managing personal care assistants
It’s important to remember that your PCA is your employee and you are their employer, so you need to view the working relationship as such. Setting out clear expectations and boundaries at the beginning of the working relationship is key to a successful future.
It’s advisable to bring a trusted friend or family member along when you interview prospective PCAs to help you form an opinion. Set out clear interview questions and above all, go with your gut instinct — if you don’t like them, don’t hire them! Explain what you will be expecting from them and your management style to make sure you’re a good match. Always check their references before offering them the position and have an official contract drawn up containing all the relevant details.
Training requires on-the-job experience and it may take a while before the two of you click into a workable and happy routine. Don’t be afraid to speak up if things aren’t going the way you want, but be sure to give the PCA enough time to be fully confident in what they’re doing and give them the chance to correct any mistakes. You are there to guide them, and also to treat them with the respect and gratitude they deserve.
Ending a PCA relationship
If for some reason you don’t think your personal care assistant is working out, then you’ll need to sit down and have an honest but respectful conversation about why you need to let them go. Expect that the PCA may be upset or angry and try to answer their questions constructively. It’s advisable to have a third party sit in on the meeting to take notes or simply observe. If applicable, offer severance pay and a reference.
If your PCA has come through a home care services agency then you need to communicate with your care manager why the working relationship is not working and why you need a replacement. Provide honest feedback about your PCA, including the positive aspects of their work if there are any, since while they might not be the right fit for you, they could be perfect for someone else.
Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.