Caregiving Instructions After a Spinal Cord Injury: Personal Experiences with Paralysis

Honestly, our caregiver was amazing. She actually became a member our family. So, we talk on a regular basis. She’s no longer with us because he’s doing so well. But she comes and has dinner with us, but I didn’t really have to work with her. We pretty much told her “this is how we stretch him,” and she was amazing from that on.

Be assertive, be assertive, you are in control of your life. You have to tell them what you do and don’t like, what you will and will not accept and who is in charge. I had to learn that the hard way because these caregivers, they came in—and I am not saying all caregivers are like this, you got the sloth, then you got the bossy lady that wants to be mama. And then you have to ultimately remind them that you work for me, this is what I like, this is what I don’t like, this is what I’ll do, this is what I won’t do. You have to control your care, you have to direct your care, I guess that’s the better way to say it, and that’s a process to learn. So, when you get a caregiver and it’s hard for you to say you feel helpless, you feel like you’re just the patient and they’re the caregiver, so they’re supposed to know what to do. But you can’t treat it like that, it’s not the hospital. So, you have to say, “I want my lunch at such and such.” “I would like for you to make sure you’re cleaning my room.” “No, I don’t want my things placed there, I like my things to be hung up, don’t hang my clothes,” you know. It’s every little thing that matters to you, you teach them.

I mean, we always treat the caregivers like how we would want to be treated if we were working in that situation. And, we try to treat the caregivers, although they are employees, we try to treat them more like friends. But you have to, we have to keep telling ourselves that they're employees. Sometimes that's more difficult, because it crosses that line.

I leave that up to Vicky.  She’s a very strong-minded individual, she’s lost a great deal, and I don’t want to take away any control that she can have over her own life.  And, I have learned being married for quite a few years, there’s some things best left to her.  And she does it; she tells them what she wants.

It's important to understand as a caregiver that you have to be really cognizant and aware of the fact that you need to adjust your role. You know, my first instinct was to swoop back in and to take care of my baby, and that worked healthily for a while. So I think going forward, it's important for, just, the caregivers, to just very so often in different stages of life, just step back and say, "okay, how I need to adjust my role in his life."

It's not easy to ask for help, and especially like when I'm asking my family, it's sort of like a balance between, I don't want to bother you, but I really need this, and you get over that pretty quick because you need things. So just if they can help without making it seem hard or...but also really pay attention to what I want, not what they think I would want, or what they think they would want if they were me—sort of like you're doing this for me, it's not for you to judge but just to do.

I think every one of them is different, you have to find out what works best for working with them, there’s no rule there. Some of them have been great and have lasted for years, and some of them have lasted for literally one day, and didn’t show up the second day when they said they would. I find them in various ways—word of mouth is the best way to find them, but you can also get them online through Indeed and places like that. But word of mouth is the best because the people come a little bit prescreened.

I became my brother’s primary caregiver eight years ago; my brother taught me everything.  You know, from his catheter, ointments, how to put on a bandage properly.  You know, he taught me the condom catheters when he was still using those.  There were actually times where I, we ended up going to the, you know, to the hospital together for his doctor’s appointment or whatever, and I actually showed a nurse how to put in the indwelling catheter.  That’s basically what I call myself is an underpaid nurse.  You know, I don’t know if it’d be different for me working for someone else, but what I’ve learned is repetition is the best.  To continue to do it, to keep the same routine of doing it, so that way you get so good at it, that it’s second nature to you.

I think a lot of times that caregivers and people, that they go home to, and I see it all the time, they do too much for people. And if they could just say “no, you transfer.” “No, you feed yourself.” “You brush your teeth,” or whatever it is. If they would just make the person do it, I can guarantee you it would change their life for the better. I feel very passionately about that.

You gotta try them out. And it's, you know, it's like a, you know it gonna sound funny but it's like a pair of shoes—you know, you gotta try them out, walk around for a while, and if they feel great, and everything works out, great. If they don't, you know, you gotta find someone else or, you know, move on from there. It's just a matter of personalities and, you know, you can tell pretty quick when people are in your home and you're with them for a long time, what kind of person they are and if they're going to fit in or not.

A caregiver really has to be intuitive about the person, the person's lifestyle. It's very important that they know what their lifestyle is like, it's important that they know what their demeanor is like, because a caregiver is not there to educate or change that person's way; they are who they are, and you are there to assist, and you are there to meet the needs of that person. And, if that person is an obnoxious, son-of-a-gun, then he will be an obnoxious son-of-a-gun. And you get him a caregiver, a caregiver that's appropriate and fitting for that person's demeanor. You don't want a caregiver that is going to slow a person down or try to accelerate or move them too fast in the lifestyle that he lives. So, that's very, very vital, vital to know the lifestyle of the person you're going to provide services for.

If you’re going to be living with someone, it helps if that person is someone that you can get along with, because, I mean, you’re going to be sharing space. And other than that, it’s important to know that they can’t read your mind, so you have to be very articulate and descriptive of what it is that you need. You need, proper communication is really important.

Showing your appreciation, that I always try to do that. It’s a give and take again. Your caregiver is, it’s hard to realize that they’re doing everything for you, and at some point, you have to let them do for them too, which is kind of, it’s—you have to give your primary caregiver a break sometimes because they are your primary caregiver, and they are the most valuable thing in your life at this point. And you know, I know I can’t show my appreciation enough, so I always try to just show my love.

Working with caregivers, you need to be organized.  You cannot have things in many different places and expect everybody to be able to run around and find those things for you.  So having a routine, having a place where everything is to make it easier on the caregiver, because if somebody wasn’t there the day before, they still need to find the things that you can’t get up and look for.  Having respect, trying not to let your frustrations pour into the mix, because it can be very frustrating when something’s not being done the way you’re usually used to it being done.   And trying to be patient and explain those things effectively, you know whatever your needs are.  Don’t assume that they know what you need; you need to be able to explain it.  

My first advice is you know, ramp up your interpersonal skills, ramp up your communication skills because if you don’t have them, you’re going to need them. And so that’s what I had to learn to do and I learned how to meet people more in the middle. The attendants I’ve had over the years, it’s almost a friendship. I know some people don’t want it to be that, and some people are advised not to make it that but it’s kind of hard not to understand what is going on in their life as well. So, communications, listening to what’s going on in their life some. You may not be able to do anything about it, you might not be able to, you might not want to engage in it, but it’s important to communicate and listen. I’m not one that has a long list of “here’s all the things that I expect you to do. And going “this is how I do things, how do you?” And then sometimes there’s a negotiation, or sometimes there’s a compromise because I may—it’s like when I get on an airplane. My first advice when I was advising the airlines about how to lift me was saying “just ask me,” versus “well, I’ve been trained how to lift people.” Well, you’ve been trained how to protect your back, you’ve been trained how to stand right, but let me tell you where I want to be grabbed and let me tell you how to move me. But sometimes that’s a conversation that has to occur with a new attendant because they may have lifted a C5-6 quad, before but they haven’t lifted this C5 quad.

Be very upfront when you're hiring your caregiver. Say, this is what I want done, have like a list, a schedule, and so you can never, you can go through the list and say, "you didn't do this today," and she, he or she can't say, "well, you never ask me to," so.

To me I think, the most important thing, is to really watch your client's skin. You got to really be diligent about making sure no sores appear, that they're well taken care of, you know, especially on your behind, because you're sitting on it all day long. I have a Roho cushion and I've got to make sure, you know, that it's just right. You have to check it, like, if I was a quadriplegic, you would have to really have someone checking every day to make sure you're not getting break-down of your skin, because once your skin breaks down, it's more internal than external. So when, when it shows on the surface, it's actually the interior is broken down and it's just coming out, and you'll be months, you know, laying on your stomach trying to get that to heal up.

Originally, my mom was my full-time caregiver; she did all of my personal care.  And that was great, I’m really glad that she was willing to do that.  I think at the time, especially right after I got hurt, I wouldn’t have been comfortable having anybody else do it really.  But, it was I think really hard for our relationship, it definitely put a strain on it.  We spent so much time together, but it was all doing personal care sort of stuff.  And so then when we had free time, it wasn’t like we wanted to spend it with each other because we spent all of our other time together.  So, it ended up being that when I did fun things, it was with my brothers and my dad.  And that everything I had to do that was some sort of chore, and related to my injury, was all with my mom, which definitely put a strain on our relationship.  And, as I became more independent, I think that helped us a lot.  We had to do more things together that we wanted to do and spending less time together doing things that we didn’t want to do.  So, if there is any way to kind of minimize, especially if someone that you really care about is taking care of you, minimize the fact that so much of what you do together is a chore.  That would be a good thing to keep in mind.  And then when I went to school, I started by hiring caregivers from an agency, and that worked terribly.  I had a lot of problems with people not showing, and coming late, and not being reliable and that was expensive.  What I ended up doing was hiring grad students’ wives.  So, I advertised on campus, and these were people who usually had full-time jobs and came over after work to help me out.  They were great, really responsible, super punctual, young, understanding, had no history of medical care or anything like that, but they really didn’t need to.  They just needed to be friendly, and follow instructions, and that was pretty much it, it wasn’t too complicated.  So, that’s who I used for the remaining three years of my Stanford career, two years actually, and my fourth year I lived completely on my own.  Every year I basically scaled back the amount of help that I needed.  My freshman year they came every day.  My sophomore year, they came every other day.  My junior year, they really were kind of a more standby about that sort of thing.  My senior year, I lived independently.  But I would say, for me, it was important that I didn’t pay my friends to be my caregivers, just because I thought that created kind of a riskier, tenuous situation.  So, I think keeping that separate is a good thing.  I did become friends with my caregivers, but I didn’t hire my friends to be caregivers.

It's gotten easier over time to tell people what I need and what I want them to do for me. The key is on how I tell them, how I explain things to them and just to be honest. Even things, if I don't like something, I have to let other people know, that way they can stop doing it, or, you know, make it better.

Mike's caregiver and I have had our issues because I always want more done. And, there's an issue of Mike being such a nice guy, soft guy that he doesn't push people to get as much done as no doubt I do. So, I've learned to stay out of it more because of the aspect of enabling, you know, Mike's got to take control of this at some point on his own. So, year one, and year two and year three are kind of different in terms of how much more he's able to manage and do, both for himself and to direct his own care. So that's been a journey in terms of letting go.

I've gone from no nursing two to three months, to what I currently have now, which is 112 hours a week, and sometimes 115 hours a week. And that right now, I am able to work three days a week, because you have to divide those hours up on when you want to work, and when you need them. If I have a third-shift nurse, I can sleep all night. But, the nights I don't have a third-shift nurse, I might be up four, five times with my child because he's on the ventilator. Because, it's like a newborn baby, you're going to wake up if you do fall asleep because of any little sound, you have to suction him, you have to reposition him. That's lack of sleep on your part, and then you try to go to work the following day, and it's kind of hard. So you have to learn when you need to have that nursing, and you also want some time for yourself, so that you can go out and get some grocery shopping done. At the same time, is that really time for yourself? So, you have to learn when to use those hours and what to do with them.