When I moved away from home to go to college, I had to make a rapid adjustment from being at home with my parents to living independently with the help of hired caregivers. At times, I did not handle it well. I remember wishing that I had some kind of instruction manual to help me handle the interpersonal conflict, not to mention any of the other issues that come up when an inexperienced 18-year-old is expected to manage a team of people 5-50 years older than her 24/7. Over the years, I’ve developed some skills and learned how to avoid difficult circumstances, and I’m happy to share my knowledge and experience. The following is a list of dos and don’ts I have come up with. It is by no means an exhaustive list. If you or someone you love is in a situation like I was at 18, you may need this.
It is very hard to start accepting strangers into your home, especially to take care of you or a loved one. When I went to college and had home healthcare services for the first time, I was really terrified someone was going to sign up to be my caregiver and then murder me. Or abuse me. Or rob me. Don’t get me wrong, that does happen sometimes and you definitely should be careful, but think about the situation from the caregiver’s perspective. They’re going into a strange home where they are an outsider, and they sometimes know very little about what to expect. They may be more nervous than you are.
DON’T be afraid to say no.
This applies to your interactions with caregivers and agencies alike. People may try to take advantage of the fact that you know relatively little about the system to push you to settle for things you don’t have to. One thing I often encounter is agency recruiters and caregivers trying to influence my schedule or short me on hours. You can choose what time of day you have help and you don’t have to bend over backwards to accommodate someone else’s preferences. Having said that, there is wisdom in picking your battles. Agencies are often full of overworked and underpaid employees (caregivers especially) and it may behoove you to compromise in certain situations, especially one-time-only events (like an aide having to leave a little bit early for an appointment or family emergency). It will make your life easier in the long run if you make a rule to not deal with unnecessary inconveniences on a daily basis.
DO maintain boundaries.
When a caregiver spends a lot of time close to you, it’s easy to let things slip into an overly-familiar territory. It may feel impossible to treat them as impersonally as you’d treat an employee. You may even genuinely like the person and become close friends, and that’s only natural but it is important that you maintain your autonomy and keep some semblance of professional boundaries. If not, you or your loved one may be more susceptible to abuse and mistreatment, or you may feel obligated to sacrifice your comfort to make your friend’s job easier. In addition to emotional boundaries, you should remember to be guarded with your valuables, especially at first. And it’s important to remember the following: they are being paid to accommodate you, not the other way around.
DON’T apologize for your needs.
Not long after I started college, I got a really bad stomach bug and was up sick for most of a night. I had a nurse working overnights and between dry heaves I was apologizing for needing her help. She thought I was crazy and insisted that that was her job, but I felt like I was imposing on her time. In a sadly-typical-for-a-woman fashion, I was apologizing for existing and having needs. As I’ve mentioned elsewhere, it is not your fault you need help. Don’t apologize for needing someone to work for their paycheck. You’re allowed to have needs and to have standards for those needs. Whether the care is for you or a loved one, give yourself a break. You are doing ok.
DO keep an open mind about methods.
Caregivers, especially those with certifications of some kind, usually have some sort of training that allows them to care for others more efficiently than the average person. Sometimes these methods are not useful in a home setting but other times they are very helpful. If you are used to giving or receiving care in a certain way, you may overlook shortcuts that would make your routine quicker and easier. It can sometimes feel confronting when someone questions an established routine and by no means should you unconditionally accept all suggestions, but it may surprise you to find that caregivers often have a toolbox of skills that come in handy.
DON’T treat them like “the help.”
It’s really easy to ask an aide or nurse working in your home to do small favors for you. Washing everyone’s dishes, tidying up some of the rooms and generally helping around the house may be something your caregiver is even perfectly willing to do, but it isn’t their job. Depending on how you hire them, what kind of caregiver they are, and who they actually work for, they may be breaking rules by cleaning up after other people and you may be breaking rules by asking them. Additionally, they normally get paid a pittance compared to a housekeeper or nanny (especially if they work for an agency), so asking them to do things outside of their normal duties can put an undue burden on them. To say that they are overworked and underpaid is a huge understatement, so remember to be kind and be patient. None of them are doing it for the money.
DO be sensitive to their needs.
This is really just basic courtesy. If, for example, the caregiver is a single mother and their child’s babysitter is calling, maybe consider setting aside the “no cell phone” rule just this once. As long as nothing gets out of hand and you don’t have to make a big sacrifice to accommodate them, there’s no harm in allowing things that aren’t technically by the book. Having said that, as you get to know your caregivers, you’ll likely learn their needs vs. wants and it will be easier to make sure they aren’t taking advantage of your kindness.
DON’T talk about them to each other.
This is a big one and it can be very difficult. If and when you get along really well with a caregiver, sometimes it’s tempting to complain about the things your other caregivers do that frustrates you. It’s not always big, overwhelming things. Sometimes it’s easy to say “Yesterday, my aide/nurse put away all dirty dishes, and”—here’s the important thing to avoid—“she does that all the time, I hate it!” This kind of gossipy conversation makes it easy for your caregiver to think that if you talk that way about others, you probably talk that way about them too. At times, it can be very difficult, but there should be lines that you don’t cross, as with any relationship. For example, when your caregiver says “Hey, the person who I relieve when I get here always seems to be in a bad mood,” it’s one thing to say “Yeah, I’ve noticed, I’m sorry about that,” and another thing to say “Yeah, between you and I, I think she’s having trouble at home.”
DO trust your instincts.
This is some of the most important advice I was given when I started college. Unfortunately, some people like caregiving because it gives them power over vulnerable people. Luckily, you can usually tell when people are like that. They’ll say things that are a little bit off. Maybe they’re not very friendly, or, most often in my experience, a little too friendly. In college, I hired someone who made me uncomfortable from the get-go. She came to my house to meet me and immediately acted like we were best friends. She was nice and I ignored my gut, but had to let her go after 3 days when I found out she was addicted to methadone and she repeatedly asked me to lend her rent money. 6 months later, she showed up on my doorstep asking if she could look around my apartment for “some rings she left,” despite my knowing she didn’t wear jewelry. If you get that tingling feeling, don’t brush it aside. It’s your subconscious mind communicating to you that there’s something wrong.
DON’T be afraid to speak up.
If you don’t like something your caregiver is doing, you should feel comfortable enough to ask that it be done differently. You have a right to receive care that you need (within reason) and that care should be given in a way that makes all parties as comfortable as possible. This goes for things big and small. Most of the time, asserting yourself tends to go better than expected, as long as you remember to treat your caregiver as an equal with valid opinions. That also means you need to be kind and receptive when they speak up as well. When you have open, two-way communication, it keeps small issues small and large issues manageable.
DO report them if they break laws (including abuse).
If you take nothing else from this list, take this one. Abuse rates are said to be disproportionately high in the disability community. Everyone involved in the care of someone who is disabled, including the disabled person him or herself, needs to stay vigilant to prevent this from happening. When abusive situations do occur, it is extremely important that it is reported to authorities. Abusers never “get it out of their system” and stop abusing once some imaginary threshold is passed. And it is a terrible feeling to know that what happened to you or your loved one happened to someone else. Even if it is not physical abuse but a different crime, if a person with a disability is victimized by a caregiver in any way, there are specialized laws that specifically tackle those situations. When in doubt, call the police.
DON’T forget to say thank you.
I know I’ve talked a lot about boundaries, emotional distance, and abuse, but I do so with the caveat that unless there is a violation of some kind, your caregiver is there because they want to help you. It’s easy to treat a caregiver like a commodity (“Your job is to help me and I therefore have an absolute right to get your help”) but the truth I have found is that you will do yourself and your caregiver a disservice if you treat them like an extension of your own abilities. They are people with hopes and dreams, likes and dislikes just like you. Some of the most meaningful relationships I have ever had are with my caregivers. Like I said earlier, none of them do this kind of work to make money. They do it because they want to help others. We need more people like that in the world.