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Q&A: Who does the primary caregiving?
Caregiving After a Spinal Cord Injury
After a spinal cord injury, 40-45% of people rely on caregivers to manage activities of daily living such as dressing, grooming, personal hygiene and eating. Some require the help of a caregiver a few times a week, while others need full-time support.
Some people choose to hire professional caregivers, while others rely on spouses or family members for their caregiving needs. We asked 100 men and women about their caregiving arrangements after their spinal cord injuries. The videos below are the most informative answers.
He does most of his own care. Minimal help now—it took a long time to get to this point, and probably after the first six months of being at home, he could definitely see a change in where he wanted to start doing more and more, but he does most of his own care now. If he needs to take a shower, I put him in the shower with the chair. If he needs assistance with his bowel program, I’ll help him, but I mean that’s something I did every night when he came home, now he takes care of it on his own. But he puts himself to bed, he gets himself out of bed, he gets himself dressed, you know he does all his own grooming. So yeah, we’ve come a long way.
I am. I assist him with bathing; I assist him with bowel regimens. Occasionally, he needs assistance getting dressed. And, I am his maid, his cook, I’m all those things I said I wasn’t going to be after he turned 18, but I’m still doing them.
My family made it a priority to make me independent. So, by the time I went to college, I lived in the dorms my freshman year, and was completely independent and my own primary caregiver. It was a fairly easy transition because I went to Wright State University in Dayton, Ohio, which is one of the most successful schools in the country, which was actually one of the reasons I didn't want to go there because I knew that it wasn't really real life. It was a good stepping stone, but I knew it wasn't like, "Oh, this is really what it's like to be independent and adult." I mean, I was 18, you know? Yeah so, it was pretty easy since the campus was accessible, and the dorms were accessible and I didn't have issues like that. And there was a pretty prominent disabled population. Wright State University has tunnels underground connecting all the buildings, so that if it's raining or snowing, you don't have to go outside. That doesn't happen in real life. You don't always have covered parking and an accessible bathroom that you can fit in, but Wright State definitely, I suppose, supported my independence more than a regular college would.
My primary caregiver—I've got three people: me, myself and I. Number one, you have to be your primary caregiver. I mean, I use my support network of family and friends to help me with certain things, but you need to turn around and take care of yourself, and be able to advocate for yourself or express yourself if you have issues, have problems and so forth.
Well it used to be that I had a nurse that would have to come in and check up on me, and catheterize me and things like that. And now, I'm able to self-cath; I don't have to have a nurse come in any more. I do have an aide that comes in, but I'm kind of weaning down on the hours that she's doing now. I'm really learning still how to be independent, even after five years. You just, it's a big jump, and once you do it, you know, you're going to be independent, hopefully for the rest of your life.
My wife is my wife. We have a relationship that way, we did not want her to become my caregiver. And sometimes that works out fine, but for us, we really wanted her to remain a wife, and to allow me to do the things that I can do. She still sort of says, “oh, I’ll do that, I’ll do that.” And I must correct, I say “no, I will do that, it may take me a little while, but I can do this.” And it was great for me because it forced me to learn how to move around the house, and get out of bed, and move chairs, and “what can I pick up off shelves with my reachers?” And things of that nature. But it also told me what I can’t do. And so, I have friends and other people that I call, and they come change light bulbs and do all those kind of things for me.
When I went home, I lived with my mom, my parents, my mom and a girlfriend of mine, and they pretty much spoiled me to death, I didn't have to lift a baby finger if I didn't want to.
I have actually multiple, primarily for bowel program, assistance with shower, you know, so I have several people. I pay it all out of pocket, so none of this is covered by my employer’s insurance. So, it’s a mix—mix of paid people and unpaid people.
Well my caregiver has basically been there 24/7, whenever there's been a problem, whenever there's been somebody not to show up, whatever. I've had an emergency or relapse of any kind, watched my skin, because that's one of the biggest problems with this injury is a skin breakdown. He makes me do things I don't want to do, like my exercises and my different care that I have to do. And, you know, if it wasn't for him being as strong as he is, I would probably overpower the other person, and you know, let a lot of these things go, which are not healthy for me. But I probably would have done that, you know I probably wouldn't have got out of bed as much, would have laid around a lot more, would have made some poor choices, and because of that, I haven't. And, I've been able to, you know, change my life, move on, and you know, try to be successful at something.
One of my primary caregivers, I should say, is my brother. And I, and I wanted to give my brother, of course, the ability to help me because he was having, he had a daughter, and he needed a job. And so, I found out through the, through the state, that they would pay for my brother to be a caregiver for me, so that was fortunate that way. And one of the other things that was also helpful was that I knew that through experience and time, that caregivers can get burned out, if they’re working, you know, 40 hours a week for you. So I learned to develop a sense of understanding that you need more than just one person to take care of you. So I have three caregivers, it’s through a multitude of time. I have needs assessed through what’s called Department of Rehabilitative Services. And they assessed me, they came into my home, they assessed my needs throughout the full day, and they give you a total amount of hours. And so, through that time period, I have three caregivers, and I separate that time throughout the week, so that not one person is burned out through a period of time. Because all this, you know, all this is so much work, one person is not enough.
We had a nurse that came in two-hours-a-day. Other than that, I did everything else. I didn’t want anybody else taking care of him. She came in the morning and stretched him, so I can get the boys ready for school. But other than that, it was me.
He pretty much takes care of himself except if he has, if something spills or an emergency. I do his clothes, of course, his laundry because he can’t get downstairs. But other than that, he’s pretty—and he drives. He’s got a van that has adaptive steering.
If you’re a caregiver, as a parent your life is consumed by your patient, you know, your daughter, your family member. It’s physically, it takes a toll on you physically. During the night, you may be called three, four, five times. It is definitely 24/7. You have accidents. You know, whether it’s things on the clothes, whether you’re having to get out of the wheelchair back into the bed, being totally helpless. And sometimes that’s a hard thing, just like, you know, we may, she may, I may feel like we’ve done all this over the weekend, but what are we doing next? There’s already next thing to go do. So, mentally and physically it can be frustrating. But I think because of our love, and friendship and communication, we get through that.
I had someone come help me, like a couple hours a day, like to get up and shower and stuff. Then I was mostly dependent on my family, but that gets hard. So, then I looked into Department of Human Services, and they'll come and do a determination of your, your need, and how many hours of personal assistance you can get. So while I was at home, it was like about four hours a day, and then when I moved out, it was eight hours a day, which is enough to allow me to be fully independent. And I have, right now I have four different Pas that split up the eight hours into, like, three different shifts, and they come and go, and they're flexible; if my day changes, they're day can change, if I stay out later, they'll come later.
Marie right now is very independent. She has an aide come in in the morning. She lives in her home with her husband and her two children that she had subsequent to the accident. She is very, very independent, has a full life, and at one point, told her father and I that if there was a cure, that she would certainly take it, but she wanted us to know that she was very satisfied with her life as it was now.
He doesn’t need a caregiver today. He is I would say 99 percent independent. I say 99 percent because I still need to get things down from a higher shelf, or help him with certain chores, or maybe sometimes help him, like put on his pants if he wants to do it a little bit quicker. But earlier on when he was first injured, I was his caregiver. So, I was helping him with the small tasks of just getting ready and getting through the day a bit until he learned how to do it on his own. Ryan has a bowel and bladder program that today he is able to manage himself.
So, I would not say that I have a primary caregiver now; I hire occupational and physical therapy students who come in twice a week to help me with cooking and cleaning. I’m able to do all my own personal care on my own. And just to expound on that a little bit on that, I was injured in my freshman year of high school. And, a goal of mine was to graduate on time with my class, and be able to go off to college on time. And, I can tell you that three years later, the last month before I leaving home, I was still trying to figure out how I was going to blow dry my hair, I was still trying to figure out how I was going to change the cover of my seat cushion. And I was lucky because I transitioned—I first started living by myself in a college dorm.
Myself. So, I think times were different, like I said, I was in the hospital from August 20th to November 4th, that included the surgeries and rehab. And then coming home, I would say mom was the caregiver in the beginning. But then again, it was just learning the independence, and the more I learned the more independence I wanted. I was 14, going to be 15 soon, wanted to drive, you know, all of the regular teenage things, hang out with my friends. It was important for me to be that independent, but mom provided the most care I would say. And I was trying to—I mean it’s been a while back, I was trying to think back what was it, but it was for everything, it was mom because I was her baby.
I have a personal assistant. Actually, I've always had someone who has assisted me. What I'm finding is that the personal assistant, I rely on her more than I used to. However, I'm still my own; I'm my own caregiver on the weekends, or when she takes a day off or isn't there. She doesn't live with me; I live alone. She comes in the morning and stays for about four hours, and then the rest of the day, you know, I'm on my own. So what she does is in helping me with my personal care—and of course the laundry, and the housework—she does these things for me and allows me to save my energy, so I can do the rest, complete the rest of the day with sufficient energy.
I have the ability, I have a nurse that comes in, and helps out with, you know, bowel programs, and showers, and getting dressed, and all that kind of good stuff. And, she comes in pretty much as often as we need. She’s with an agency, so I didn’t hire her, but she’s with an agency. She’s been with me for like six years, so I’m lucky that way for the consistency. My wife will help out, and do whatever needs to be done, if my primary nurse can’t do it. And, I think that’s—when we go out of town on vacations or whatever, I will always work through trying to get a care attendant out of town. I don’t want a vacation to automatically mean my wife’s got to be my caregiver. So we always try that, sometimes we’re successful, sometimes we’re not.
Definitely my wife, and there’s a fine line between a caregiver and a spouse, right. And, I would much rather Faith wears the spouse hat a 100% of the time. We prefer privacy, and we’re willing to sacrifice the caregiver stuff, we’ll let her be more the caregiver, so we don’t have as many people in our lives. She’s really, or we’re really private about our business and everything else, and we’d much rather have our own house, and feel like we’re a couple with her doing more of the caregiving.
I have attendants that come in the morning that do all of my personal care. It was very, very important to me that if I was to have a husband and a relationship, he needed to be my husband and not my primary caregiver. That is something that I still believe, I want him to be my husband, not my caregiver. And even to this day, he will be my last resort for any personal care, not that he won’t do it, he would, but he’s my last resort to try to maintain that.
At this point now, I take care of all my own caregiving and everything. 15 years in, it’s like we are saying, talk about the timeframe, and it took a while, but I’ve gotten there. I won’t say I made it, there are still things that, you know, you possibly need support and help in. But all of my eating, fixing, going, anything, I’m fully independent.
I don't have—no it's, you're looking at it. I've been independent since my injury and remain independent. So, I don't have, you know, if I need a light bulb change, I have to call in an extra set of hands, but that's about it.
Right now, I'm the primary caregiver for Michele. I work at home now, so that way I can give her a lot more attention and care. But, eventually I think I will probably have to find a caregiver for her, just in case something happens to me. So yes, right now I am the primary caregiver for her.
Yeah, I do my own laundry, I do my own cooking, cleaning, everything else I need to take care of I take care of. The only thing I can’t do—and this is only because it’s down in the basement—is wash my own clothes, so I have to wait for somebody else to do that. I’ve been very independent before when I was able-bodied, I like to be as independent as I can now as a “able-bodied, part 2,” if you will.
I do everything myself. I take care of myself, I dress myself, I wash myself, I bathe myself, I travel, I do a lot of traveling, I drive. So basically, I look out for my mother now. We switched roles now, and I love doing that. She was there for me, now it's time for me to be there for her.
My husband, the love of my life. He is a Vietnam vet, so before this happened to me, one of the things I learned about him is that when he opened his eyes in the morning, he was pretty happy to be alive. When I would feel embarrassed about the bowels and the problems we were having with that, when I would feel embarrassed because I left holes in the wall because I couldn't steer myself right. Everything that he did that I felt self-conscious about he would dismiss. Sometimes I wonder, "How you can handle that we don't have sex anymore, can you handle this is how you look at me every day?" And he just goes, "I love you," as if that is the answer to everything because for him it is.
I use an aide two-hour-a-day, in the morning just to make my morning succinct and quick. While I have the ability to be independent and get myself dressed, however I like to look really nice so I use a caregiver to help me speed up that process.
Nobody, I'm totally independent. I dress myself, I feed myself, I wash myself, I bathe. I do everything a normal, independent person would do for their self.
She needed a lot of care; she needs most things done for her—it's 24/7. I left work thinking I would never go back, and then realized that somebody needed to display normalcy. So, I went back to work part time for a period of time, and then I went back full time, and Carrie went to community college.
My wife. I’ve tried using some coming-in-house aides, it’s difficult; a lot of the stuff’s very personal. I did a lot very personal things with my wife before I was injured, so it didn’t seem like it was as difficult to deal with. It’s harder to be embarrassed by somebody you’re that close with anyways. And, just, trying to depend on a stranger to come into your house, and you have to trust them with all the things that you do in your life, whether it’s with finances, or doing the things the way you want them done. Whether they’ll show up on time, whether they’ll call in sick. It’s always just worked better for me, you know, for us, for my wife. She’s, she didn’t work for 17 years before I got hurt, so she wasn’t employed at the time that I got injured. All and all, besides we drive each other a little crazy every once in a while being around each other that much, it’s worked out good.