Guest Author - Monica J. Foster
Being dependent on other people for your care when you have a disability can be frustrating. Still there are ways you can feel more in control, through choices, of your own life.
Dealing with personal care attendants and other in-home care can be stressful even when you know they have the best intentions. Whether you can communicate by voice, augmentative device or other means, always make sure the all professionals involved know your needs and preferences. They are there to make your life better, not to leave you helpless.
Whether you hire your own attendant or use a service, you have rights. Not all personal care attendants will have the same values and beliefs that you do, but that doesn't mean you must live by their rules. You call the shots in your own care. Let your family and any care services who oversee staff to know what your wishes are. If there is a certain way you like to sit in your wheelchair, or a certain way you like to be dressed, let someone know. There's no reason to be uncomfortable. This is your life.
Medication and therapies are a necessary routine, so there's no getting out of that if it's doctor prescribed. However, if you prefer to take medications with a particular drink or food, let your caregiver know! Let them know that a certain food or drink with that pill makes you queasy or pills are too hard to swallow, so you need it in liquid form or crushed in a spoonful of something like applesauce.
Caregivers are going to be there to help you keep up your household routine. If you like your bed made a certain way, you don't have to be mean about it. Just let them know you are used to things being a certain way as politely as possible. You're a person and this is your home. Do you prefer your towels and other laundry be stored somewhere you can reach when you are on your own during the day? Let them know. There's nothing worse than having someone who means we place your things out of reach and then you've fallen trying to reach them. Tell them!
Do you have a routine that helps your mood or keeps you better focused? Tell your caregiver or attendant you like to get up by a certain time, barring they are running late for unforeseen reasons. Don't stress! Traffic and emergencies happen, but it can be a nuisance. When professional caregivers do a great job, let them and their supervisor know! Service providers want to know when they are doing a good job so they can keep doing it. On the other hand, do let someone know when you aren't happy. Don't be afraid of having it taken out on you. Document with a witness you let someone know you were unhappy.
Go up the chain of command if you don't get the results you want, but always document on paper or in a datebook. Have someone help you write up the incidents that bother you if you have difficulty writing or typing. Tell them constructively what is wrong and how you would like things to change. It could be anything from a different shift, a different care provider, an adjustment in certain methods. Be bold, be direct, be honest and be grateful when things are done well. This is your life, your choices and your routine, so make clear what you want and need to lead a quality life.
Accept a few wrinkles in your routine at first. People need time to adjust to their work routine and to your needs. You also need time to adjust to new people. Having to depend on someone else for things can make things uncomfortable. That said, don't allow yourself to be neglected. If you need a bath, you need a bath. If you want to be dressed and ready to go out by a certain time, don't let that slide. Put together a schedule with your family members, caregiver or service provider. Make sure it's posted where everyone can see it. Give them the opportunity to check off things one by one as things are done.
When I needed a personal care attendant, we had a check list, not only in the agency folder to check off, but a check list on my refrigerator with the days certain things needed doing. I had difficulty getting my own groceries and doing household chores when I first moved out on my own. Rather than have my retired dad, who is also a transplant survivor, make the trek back and forth from his place to mine, I took it under my own responsibility to use the services out there. It took a while, but I found the right attendant, with a great personality who had my best interest at heart. I looked forward to her visits each week.
Jsut as they say you have to kiss a lot of frogs to find your prince, I had to go through a few personal attendants before the right one came along. Some had not so pleasant work habits, displeasing personalities, showed up too late or too early or did sloppy work. I recognized they worked hard in their day. But, if they became completely neglectful of their time working to help me, I spoke up to the agency supervisor and made it clear what my needs and expectations were. I asked about the grievance policy of the agency early on, but not in anticipation of a problem -- just in case. I documented habits and behaviors I would not tolerate. I documented names and dates, when they were late or too early or didn't work the whole time assigned. It was my right to be dilligent in what services I was paying for and alloted. It doesn't matter if the money comes from your pocket or from state and federal funds. That slot is yours and you deserve quality work.
And personal care attendants also deserve respect. The industry sees a high turnover rate with few incentives. No, that's not your fault. Being nasty, bossy or combative, though, doesn't help anyone and just makes it harder for you to find the help you need. Go through the paces, learn the routine with your caregiver and voice your preferences. You're a team working together. You don't have to be friends, but you do have to respect each other -- as people. That's what each of you is, a person. You aren't a patient or client first. You're a person first, and so is your caregiver.
If anything, some attendants may not have been trained well, or they need reminding because they have more than one person to work with, so do your part to make sure they know how to treat you or anyone with a disability -- with respect. The next person on their caregiving schedule will appreciate it and so will you. When an attendant comes and goes, it can be disheartening to see faces change, but be sure they know you appreciated their work and let the service know. Also, as you make the transition from one caregiver to another, tell the supervisor what adjustments you would like to see. Maybe this new person coming to care for you can do an even better job or improve on something in your world.
Remember that you are in control! It doesn't matter if you spend a lot of time in bed, are a quadraplegic, have speech or learning difficulties. This is your life and you have the right to the choices you make in your care. Speak up and be your own best advocate.