It is a simple fact of life that people inconvenienced by a wheelchair will need some assistance. The amount and frequency of help depends on your level of function (and mind-set). Paraplegics and low-level quadriplegics, and folks with MS, ALS, etc., can often dress and wash themselves, manage their bowels and bladders, and prepare meals and feed themselves on their own. Often, they can get themselves to and from different locations. But there are times when even the strongest and highest-functioning folks need assistance. For instance, when boarding or deboarding an airplane on a "straightback," or "aisle" chair (see the Transfers and Travel sections). Or when something is out of reach and there is no way to use a grabber, or get one's self out of and back into a chair.
High-level or low-functioning paras, and quadriplegics will, of course need more assistance. But it is important for anyone inconvenienced by a wheelchair – at whatever level of function – to do as much as we can for ourselfves. This is true for at least two reasons: (1) You’ll feel better about yourself. If we allow others to do things that we can do, we fall prey to the devastating victim mentality. Sure, we may need some help – No one goes through life without needing some kind of help – but we should do just about everything we can for ourselves (without being "an island"). It helps us to maintain our sense of self-esteem in spite of the fact that we need more assistance than most folks. (2) Others will feel better about you too. Most people are glad to provide some assistance to people who need it. Sometimes you’ll find people who want to provide too much help. But it is fairly universal that people don't like to help others if they are not doing what they can to help themselves. In fact, you'll find, the more you do for yourself the more people will respect you, and the better they will feel about helping you. You may 'need' some assistance, but you don’t have to be 'needy.'
It is normal to feel overwhelmed by a life-changing injury or medical condition. Many of the day-to-day activities we used to take for granted require a great deal of planning and/or assistance to accomplish. This can seem daunting. But if you take charge of your own life, and at the same time acknowledge what assistance you do need, you are well on your way to leading a productive, rewarding, and enjoyable life.
The key is to plan for and secure reliable, competent assistance. This is not always an easy task (even if you can afford to pay for outside assistance). When I was newly injured and returned home after the hospital and rehabilitation, I began using nursing agencies to staff my morning routine of bathing, dressing, transfer to the chair, shaving, brushing teeth, etc. It didn’t take long before I figured out that the agency scheduling coordinators have enough trouble finding nurses or aides to fill slots, even without considering whether they are competent, or a good match. The nature of the nursing agency business is such that agencies make the same money if they staff with a top-notch, efficient, pleasant nurse, or they simply furnish a warm body who just shows up and struggles through the shift. In fact, they may have to pay the good ones more, so they make more money when they staff a crummy nurse or aide.
Naturally, the agencies are more concerned about pleasing their bigger clients (hospitals, nursing homes, etc.). So where do you suppose their best nurses are scheduled? And who gets the left-overs? You guessed it! Very often, the individual client gets the nurses who either don't want to work in the rigorous-paced hospitals, or the nurses who can’t cut it. Many nurses who sign up for "agency work" are looking for part-time work where they might give some medications and sit around all day in case a patient goes into cardiac arrest.
On the other hand, some great nurses and aides do go to work for agencies. The point is: you take your chances when someone else sets up or staffs your care. Most nursing agencies don't have their own staff. They have a database of nurses and aides who have signed up to take shifts they can accept or reject. When they get a call to staff a particular job (for one nurse or 50), the scheduling coordinators try to match nurses from their database with the requirements of the job. Very often the scheduling or staffing coordinators do this by calling a number of nurses or aides in attempt to coax them into taking the shift(s). As you might imagine, the coordinators do not have an easy job. They are often harried in trying to staff all of the shift requests they receive. As a result, you may not get the same person back, if you get anyone at all. So you invariably end up retraining new nurses to your particular routine.
After training several nurses, putting up with some remarkably inept and amazingly lazy nurses, and after getting dropped literally on my head three days in a row (I mistakenly believed there was no way she would ignore the instructions for transfer the third day), I finally decided there had to be a better way! I ended up finding my own nurses and hiring them directly. If you can cut out the 'middle-man' you can pay more to the nurses. I have been employing nurses, aides, and nursing students directly for my morning routine for about 20 years (some have stayed with me for more than ten years). I also employ a legal assistant and drivers. More about considerations for hiring and employing later in this section.
There are some important things to remember for interacting with the people who provide assistance for you. Whether they are employed by you, are from an agency, or are volunteering, these guidelines will help to create a more positive experience, both for you and for the people helping you.
First, take a genuine interest in the people providing assistance (I don’t like the term "caregiver," seems too institutional or something). Get to know them if you don't already. When you know the person you can relate to them, and as a result you can communicate with them, more effectively. You can also understand what might be making them a little cranky or absent-minded on a given day. This allows you to be more patient when something doesn't go quite right. And it allows you to evaluate their requests (or explanations) from a more knowledgeable position. But more importantly, getting to know the people assisting you provides for smoother interactions. You may have a particular objective or goal in mind – a task for the assistant – but no one wants to be a robot. We're all human, and we want to be appreciated for who we are, not just what we do. Get to know the people assisting you, ask about their lives. It will make your relationship more enjoyable, not just task-driven.
Second, work hard on communicating effectively. The first thing to consider in communicating effectively is to know your audience. Different people learn in different ways. It is easy to assume people around us learn the same way we do. But that can be a mistake. The world can be divided into (at least) three groups for generally understanding the primary way we learn and absorb information – and thus the way we prefer to receive information: Visual, Auditory, and Kinesthetic.
Roughly 60% to 70% of the population is VISUAL. They process information best by seeing. Many "Visual" people will need to either see something or reduce it to writing themselves to fully grasp it and remember it. For these people, a list of steps may be critical. Seeing a list may help them recall what needs to be done and/or the order in which things should be completed. Pictorial representations may be helpful. Seeing someone else perform a particular task may be far more effective than hearing how it is to be done, or even doing it themselves. There are some clues that may help you identify that you are dealing with a visual person. For instance, they may say things like, "I see your perspective;" "it looks like this will be it;" or "I see what you're saying."
About 20% of people are AUDITORY. They process and remember best when they hear things. Everyone knows people who didn't take notes in class, or have a knack for recalling jokes or movie lines. Chances are they are "Auditory" folks. Auditory people learn best by hearing instructions. You may want to tell them an overview of what needs to be done, then talk them through, step-by-step. They will probably have better retention that way, than seeing instructions, pictures, or even a video. You might hear an Auditory person say things like, "I hear what you mean;" or "it sounds like you want is ..." When you’re talking to an Auditory person, he or she may tend to watch your mouth because they’re focusing on what you are saying. As you might imagine, it may be easier to teach an Auditory person something new if you can't use your hands to show what needs to be done. He or she may say, "I hear you."
The other approximately 20% of the world is KINESTHETIC. That means they process best by experiencing or feeling. A combination of visual and auditory instructions may help them get through a task. But the "Kinesthetic" person will understand and grasp the process best once they've done it themselves, and once they understand how and why its done a particular way. They are not really a combination of Visual and Auditory learners (most people are a combination to varying degrees, and also are part Kinesthetic to different degrees). But the Kinesthetic person is an experiential learner. They may tend to be a bit more empathetic because they are sensitive to feelings. The "Kinesthetic" learner may say things like, "That feels right;" or "I sense you mean ..."
There is quite a bit of information available about the way people learn. Quite a bit of it is available for free on the Internet. Often, people will know which way they learn best, and they will be able to classify themselves as belonging to one or another of these basic groups. Try asking which way they learn best. Of course, most people learn through a combination of visual, auditory, and experiential inputs (blind people and deaf people obviously have, or develop, different means of processing information or learning). These categories are simply a way to identify the primary way people take in, process, and retain information best. But you don't want to look for just one kind of person to assist you. Everyone has different intelligence, skills, and memory – which may be unrelated to the primary way they process information. But identifying the primary method can help you tailor the way you present information to them. We all tend to expect that the rest of the world learns the way we do. But we can realize significant improvements in communicating ideas by paying attention to the way your AUDIENCE prefers to absorb information.
The next important thing to remember when communicating is Consistency. Several people could see, hear, or experience the very same thing and all describe it very differently. We all have different experiences and perspectives. That’'s often a cause for conflict, but that's just the way it is. And the sooner we realize that it's not going to change – or more importantly, that we're not going to change it – the sooner we can get past it and become more effective communicators. When you say something that may be interpreted more than one way, you shouldn't get mad, and you shouldn't think your listener is stupid. For instance, when I ask a nurse to comb my hair "straight back," the nurse may have a different understanding of where I mean. So I need to explain exactly what I mean by "straight back." And then I need to be consistent about using that term.
Likewise, we need to be consistent about what we call things. If we mean "leg-bag" to be a 32-ounce urinary collection bag with button-holes, or we mean "night-bag" to be a large urinary collection bag with hooks for hanging, we need to use those terms consistently. We can't refer to them as urinary-bags or drainage-bags and expect others to know which one we mean. This sounds elementary, but it is very important. How many times have you heard someone say, "hand me the thingy;" or "give me the whatcha-ma-call-it"? Then they get frustrated with someone who doesn't understand! How rational is that? Or how effective is it to complain, "you know what I mean"? Say what you mean and be very intentional about saying precisely what you mean. It will help you by reducing your frustration, and others' mistakes and frustrations that may affect you (sometimes drastically).
We shouldn't be afraid (or too stubborn) to change how we refer to things. If most people around us have trouble following our directions, maybe we should think about changing how we give directions. We're all wired differently. We all process and retain information differently. Remember this when directing people around you, or asking for help.
Also remember that, in general, people are not good listeners, and are not good at following directions. They come with preconceived notions of what needs to be done and how to do it. Those preconceived notions very often override information input. In our everyday lives, we make our own assessments and make problem-solving decisions all the time. So we don't often look to other sources. We try to figure things out for ourselves. As noted above, most people don't like to be "robots." They want to feel good about how they chose to get the job done. Good listening skills are uncommon.
Unfortunately, we don't have the luxury of allowing people to figure out, on their own, the best way to do things for us. That could be incredibly time consuming, and actually dangerous. If your skin isn’t treated correctly, for instance, you could get a decubitus (skin ulcer). See Skin section. And if you're not transferred correctly, you could get dropped. You may experiment to try different approaches, but I find it fairly helpful to explain carefully to new people that almost every step they'll learn is different than what they expect. I think a good word is "counter-intuitive," but people don't seem to respond well to that word. So now I say, "It’s not what you'd expect." Sometimes that helps.
You will tend to get better results if you take the time – before you start – to explain to people that you will need to walk them through step-by-step, and that you don't really expect (or want) them to try to guess or figure things out. You also might try telling them not to worry about speed ... at first. Let them learn it correctly, then they can speed it up.
With all that being said, no matter how good your instructions, there are some people that just are not going to be good at providing assistance. Either they just don't "get it," or they don't care. Some people just cannot bring themselves to let go of their preconceived notions. It will save you a great deal of emotional energy and frustration if you can replace them once you feel they are not going to work out. In the past I mistakenly believed that anyone can be trained to be a competent assistant, with enough patience and attention to communication. I was wrong. Some people just don't have it in them. You will do well to identify them quickly and "cut bait" as it were. If, after giving someone a fair opportunity, they don't learn how to do things, simply replace them as soon as you can. You don't want to berate them, insult them, or be nasty. But explain that it just doesn't seem to be working out and you want to give them an opportunity to do something they will enjoy.
Of course, this may not be an option. If you don't have any backup, or the person is your spouse or family-member, you may need to carefully explore why the person is not doing so well and figure out how to improve the situation (without making them feel defensive). If you have means to hire or employ assistance, I highly recommend you do so. Relying on family or friends for everything can, and almost always will, change the dynamics of, and put a strain on, your relationship. Try hard to find a way to hire your own assistance. It may seem harder in the short-run but it is much easier in the long-run. See Hiring & Employment Tips below.
Another key thing to remember is to delineate responsibilities and keep them separate to the greatest extent you can. The saying "Don't put all your eggs in one basket" is sage advice. By this I simply mean don't rely on one person for too much. Always do as much as you can for yourself, but for the things you cannot do, divide the responsibilities among a number of people. For example, if you have help with morning care (bowel, bladder, bathing, dressing, hygiene, etc.), divide the days amongst two or three assistants (caregivers). And also delineate the morning care functions from such functions as meal preparation, office assistance, or driving. Now, that being said, it may not be practical to have different people for every function. Indeed, it does not make sense to have someone come in just to empty a leg bag throughout the day, right? So there is bound to be some overlap of functions performed by various assistants. But you will do well to keep people primarily in the roles they prefer and are good at. If you rely on few people for a great deal, imagine what will happen if they move or take another job. Or what if they blow a disk in their back (without warning) and have to stay in the hospital? They may also get to feeling they are irreplaceable and use that as leverage. Remember to contemplate before you act, and figure out what is best for your situation. But try to keep responsibilities separate.
Scheduling and back-up are critically important. Especially if you cannot get out of bed on your own, or can't empty your urine drainage bag on your own (for instance). We live in an imperfect world. People get sick or hurt, and people have emergencies. Things happen beyond our control. So, occasionally, you can count on people not being able to assist you when you are counting on them. It is truly a rarity that a nurse or assistant isn't absent at least once or twice over a span of years (I am especially fortunate to have a nurse that for whom over a course of more than ten years I cannot recall a single absence. I've got some super-dependable ones now, too). It makes sense to provide your assistants and nurses, etc. a list of emergency contacts to call (in order) until they actually speak to a live human who will take care of the situation or agree to find someone who will. Explain how important this is. Tell them that if they don't follow through you'll be stuck in bed and may have serious consequences (See: Dysreflexia and Skin sections). You also need backup that you can contact by yourself. See: Computers and Home Conrols/Alarms.
Hiring & Employment Tips
The first thing you need to do is let people know you’re looking for help. Craig's List (www.craigslist.com) is a wonderful, free web site for finding people (employees, roommates, etc.). Craig's List is the best resource I've found. In fact, I was going to include a section for free, wheelchair-related classifieds on this website, but I can't do it nearly as well as Craig's List so I didn't.But you have to be careful. The Internet is a haven for many predators. Don't give out too much information that can make you vulnerable. It's a good idea to get a phone number and call people back before you let them know where you live. If something sounds fishy, it probably is.
Get written permission (click here for a sample form) and do a background check on anyone you don't know. Let people know in your job/roommate posting that you'll require a background check. It is $50 well-spent (click here for a form to contact a private investigator who can do background checks for you through the Internet). You can have applicants pay for their background checks. If they are clean you could refund the money. If they won't pay, that might signal they have something to hide.
Posting on other Internet bulletin boards (other than Craig's List) may also work. Check around the Internet to see if there are local resources for pairing people who need assistance with people who want to help.
Word of mouth can be an effective method to find people. Often friends will pre-screen other people for you (sometimes this is good ... sometimes not so good). A mass e-mail to all your friends and family can get the word out quickly, consistently, and inexpensively. But just remember that you don't have any control over what your friends and family tell potential candidates, if anything. Current employees can also find friends or co-workers looking for extra money. They may even post something for you on a hospital or medical office bulletin board.
Posting (flyers) is relatively inexpensive and offers a little more control over your message. You can't keep someone from taking your job-posting down (or maybe even changing it). But you do have good control of your original message. And it can be targeted fairly well. We've all seen the postings on college or grocery store bulletin-boards with the cut phone-number tear-offs. Think for a while where Nurses, CNAs, Aides, Students, etc. in your area may find your message (whether they are looking or not). Maybe a nursing home or hospital employee break room, or a Nursing school bulletin board. Postings can be pretty effective if you can write them well and get them up in good locations (you may have to ask permission).
Advertising in the Classified section of newspapers is more expensive, but it provides fast, responses from people actively looking for work. If you get responses to your ad for:
PRIVATE DUTY
Short morning visits
for Quadriplegic in
Houston. Call 555-5555
then you can generally expect the respondents are looking for that kind of work. Before I found Craig's List I had the best luck with an ad like this one (with the addition of "Great pay"), and an e-mail address rather than a phone number. That way, when I got inquiries I could respond by e-mail with a lot more detail about the position (write it once, then copy and paste or create "signatures" for fast easy replies), and am not interrupted by lots of calls, which invariably come at inconvenient times. E-mail is wonderful. It also allows you screen people who you know will not work out (for example, if they can't follow even simple instructions, or their schedule won't permit the times you need assistance).
In some metropolitan areas you may have newspapers targeted directly at healthcare workers. In Kansas City there is a weekly newspaper called the Kansas City Nursing News. It is delivered, free of charge, to nurses in the area. It is a "highly targeted media buy," but because it comes out weekly, you can count on your ad being missed by all who are not actively looking that particular week. Therefore, it is a fairly expensive option (but one which has yielded some good results ... again, before the advent of Craig's List).
Metropolitan newspaper Classifieds have much broader coverage and are generally more expensive per line than a Nursing News publication. If you place your ad to run Wednesday and Sunday you'll catch the greatest number of people actively looking for work. But ads in the newspaper are quickly becoming a thing of the past. Online options are much more efficient (and fast). If you do go with a newspaper ad, remember that sites like Career Builder may just copy the print classified help-wanted ads onto their site. When I used newspaper ads (before discovering Craig's List, I never paid the extra charge for "Internet publication" because all print ads automatically appeared online.
When you advertise – whether on Craig’s List, in the newspaper, or in the grocery store – remember to provide plenty of information about the position (Pay, benefits, hours, Job description, etc.).
I’ve found that when hiring nurses it makes sense to pay them by the visit, rather than by the hour. This gives them an incentive to work faster, and thereby make more money for their time (if they move quickly). You have to be able to offer a fair amount per visit. And the amount will change depending on where you reside.
You should also look at whether you hire nurses (or other assistance) on an employee basis, or as contract labor. The benefit to hiring people as contract employees is that you don't have to pay social security (FICA), Medicare/Medicaid, unemployment insurance, or have workers compensation insurance for them. There are legal questions that need to be answered to determine if you can classify assistants as contract workers, rather than employees earning wages. Likewise, you may need to get a waiver from contract workers if you do not intend to provide workers compensation insurance. Be careful in this regard, and get legal advice or whatever information you need to protect yourself. I pay my nurses wages as regular employees because they prefer to have their taxes taken out, and have me cover their workers compensation insurance. But the people you hire may prefer to have the money it costs for those things up front, and take care of those needs themselves.
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