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Q&A: What was the hardest part about coming home?
Problems Coming Home After a Spinal Cord Injury
Thirty percent of people with spinal cord injury are hospitalized one or more times every year after their injury. Leading causes are urinary tract infections and pressure sores, followed by respiratory, digestive, circulatory and musculoskeletal diseases. This makes planning a daily skin-inspection routine and finding reliable help important in maintaining a healthy lifestyle. Both individuals and family members often feel unprepared and uncertain of their caregiving abilities.
Often, spinal cord injury patients return to homes that are not accessibly designed, which leave them feeling isolated and dependent on others for basic needs. It is not uncommon to experience depression.
We asked 100 men and women living with spinal cord injury about the hardest part about coming home. The best answers are below.
When he went home, there were just so many things you don’t think about. You don’t think about how’s he going to brush his teeth, how’s he going to wash his face, how is he going to do the daily routines that we kind of take for granted? Didn’t think about that. So, we went home, I was off for maybe a week, and we said, “Let’s figure out a plan on how you can do these things.”
It’s like having a newborn at home again, I mean, it’s scary. You know, I’m worried about rolling him every two hours in the middle of the night. Taking over, you know, I did a lot of the things when he was in rehab, especially near the end, so I knew how to do them, but taking total control of that is scary. One of the big things with people in his situation—he’s a paraplegic—is the dysreflexia, is where they, their body reacts, their body’s trying to send a signal that they have some kind of problem going on, and it’s trying to send the signal, but their blood pressure either drops, or you know, he would get sick, you know, he wasn’t maintaining necessarily his blood pressure, so he had to have a, you know, special wrap around his stomach to help keep the blood pressure higher. That kind of stuff, when you’re in a rehab environment, and you have someone there to support you like a nurse or an aide, who knows what’s going on, and knows that he’s reacting that way is one thing, but then you get home and it’s a completely different thing. One other thing is that a lot times they tell you that the risk of, like, urinary tract infections for a paraplegic person are going to increase when he comes out to the real world. He’s been in like this somewhat sterile environment, and his body used to this, and, you know, sure enough he’s home a month, and he gets an infection and ends up back in the local hospital. The local hospital had no idea how to handle a paraplegic patient, none whatsoever. They didn’t understand the bowel program, they didn’t understand the medicines that he required, it was actually very surprising to me that I had to tell them what we needed to do for him to be able to stay in the hospital for a few days. You know it was, it’s a little scary that, you know, feeling that I know more than these people who are—and not that I knew more than them, but I knew how to take care of him better than they did.
You know, just having to look at the world through different eyes now, because now the smallest crack can be dangerous for me. You know, every little thing was an obstacle. Not only that, you need to deal with, you know, the way people treat you, you know what I'm saying? Because a lot of people see you, and they're like, "Aw, look at the poor guy in a wheelchair." You know, and, I'm not the type of person that likes pity. I say, "Don't open the door for me; I'll open it for you. I got you."
The house was not ready when I got home. So, we had to come in through the back door, which the yard was already kind of bumpy, so we had to come in through the back door. And, up two or three steps, and then we were in the main part of the house, which is the living room, and the kitchen and the dining room. And that’s where we kind of stayed for a little bit because our bedroom was upstairs, and they were building an illegal ramp that came off our bedroom. So, we had a nice porch back there but totally like this. So, it was kind of a nightmare at first.
I was really concerned with, I was like a really young lady—21—so I was really concerned with fashion, wearing jeans, and how would I even get the jeans on, but those were some of my concerns. They may seem shallow, but in the beginning, I was really concerned about that. It took, like, an hour-and-a-half to just get my sock on, but once I finished it, I felt like I had just completed a 50,000-mile marathon. It was very frustrating, but I learned that I didn't, I couldn't let things like that frustrate me because it was just learning everything all over, and nothing comes just automatically. So, I was just really frustrated at first, but once I got it, I felt very proud.
Here at Shepherd we have built this nice little microcosm where everybody is in a wheelchair, everybody gets it, everybody speaks the same language—you go home and I was the only one. So, for me it was the social aspect that was getting out, and going out with friends, or just getting acclimated to school again. For me just being the only person in the wheelchair for me was difficult.
Adapting, because in the hospital everything is accessible. When I first got shot, nothing was accessible—the buss nothing, no lifts, no nothing. I got home even to get in the bathtub, get out of the bathtub, it's a whole different world. It's like day and night, you have to start like a little baby all over again. That was the hardest part.
Being in the hospital, you’re in this cocoon environment. Things are very much catered, meted out to you, you’re in a supportive community, but then when you get out of there, you’re back in the real world. It’s like going to school for the very first time; I’m going to a new life for the very first time. Because I’m learning everything here in this environment of a hospital, but when you’re out of the hospital, everything is all so new.
I was, well, if you added all together, it was two months of acute, three months rehab, so five months total. And then I moved back in with my parents, I didn’t immediately go back to college. And I was also in a manual chair back then, so I did manual chair probably for the first 30 years of my injury. Then I started coaching softball, and traveling more, and then shoulder started bothering me a little bit so I went power. But going back and living with them, you know, they had a split-level house, which means I lived in the bottom floor, which means I had to go around the house to get in the bottom floor. So, five months and then back to my parents.
Well, that would be, probably just the whole interaction of, you know, just around the house. I've always seen her around the house, in the kitchen. And then, you know, to struggle, you know, opening the refrigerator, or, you know, using a stove, and that sort of thing, because I know how important that was to her. Like, she loved doing that, and did it with such ease and grace, and now that this was such a task, I think that was, that was the first thing I really noticed. Because, I know we, you know, at least internally, I know I was like, "I wonder how she's going to react when she needs to go and do that stuff?"
When I first came home it was fine, but then everyone started going back to work. And it definitely got a little bit lonely, so I had to start figuring out things to do and people to meet also. It definitely took me a little while. I think that’s when everything first sets in, that you’re alone, and you have to start learning to get yourself into routines. It took me about six months to a year to actually feel that I was comfortable about myself, so I think that’s when I really accepted the injury and everything.
Well the house wasn't really accessible, so we had to get used to her sleeping in the living room, in a bed in the living room. We had kind of like a makeshift ramp to use to get up and down the stairs. And, I guess, that was probably the most hardest part, but she did have a lot of friends that would come and support so that made it easier. Once we adjusted to a bed in the living room, you know, that was just about the hardest thing, you know. That was it, it was good.
Well, when he first came home—I don’t know if you want to hear that part about the cathetering—he had to be cathed every four hours. Well, he came home after—I don’t remember how long it was, a couple of months, I guess—he came home, and I was up every four hours during the night, you know. And, then if we went out anywhere, I had to be back in four hours to do the cathing again, because he can’t use his hands. So, that was rough, and that went on for quite a long time—I’d say six-seven months, eight months. And then we got a hold of his urologist, and he went with an indwelling catheter, and that made all the difference in the world. We still had our troubles, you now, where they clogged up and this and that. You always have that, and we still have that, that’s part of the injury, you know. But, I think that was the hardest part of him coming home was that four-hour routine. I looked like that Dunkin Donut guy, you know, coming or going, I didn’t know where I was half the time.
I couldn’t see life; I couldn’t see that I could still live life. I didn’t have a van then or a car, I’m in a big powerchair, so they can’t just pop me in the car and take me somewhere. I was afraid to go anywhere, my parents were afraid to touch me; they don’t know how to handle me. I felt like I was ruining everybody’s life, you know, taking up their time and energy. I felt helpless and nobody who used to be independent likes that feeling of helplessness where you could go in the kitchen to make a sandwich before, now you got to sit there and ask for somebody for something as basic as a sandwich.
A lot of emotions, sadness, shock, anxiety, just overwhelmed. There was so much on my part that I needed to do for him and for myself, and just a lot of weight to carry. And at the same time, I was trying to be a strong person for my husband, but I felt really just, sometimes just really sad. And I wanted to go through those feelings that came with the loss myself, but it felt—it made me feel isolated.
I think you really understand when they come home. Because this is more or less I believe a safe setting when they’re in rehab, and you come every day and you set a pattern, and there are people here who care for them. When you come home, there’s no one there. There’s no safety net, no one there to catch you if something goes wrong. You’re on your own; you’re insecure about how to deal with things. And it’s not just the injury; it’s a lot of the different things that go with the injury. For instance, when he came home, he had a Foley bag, and we had to change that. And, I have a friend, who was a nurse who was there for me for lot of things, but when we had to change that, she wasn’t there. And, my husband and I had to do this on our own. Even though they tell you about it, you’re really not sure until you do it, and we actually wound up calling the fifth floor nurse’s station to get someone to walk us through it.
I spent, I spent quite a bit of time by myself, and had to figure out how was I going to do things, and I needed to learn a lot of patience, and be comfortable spending time alone. So, reading and listening to music became more important than they had been. It was a lot of what I call downtime. And one of the things, because I had, the level of my injury compromised my hand and finger function, I would spend time with a handwriting book practicing handwriting. I'd say, "I can't believe I'm doing this, I learned how to do this in first and second grade, and here I am like an infant starting all over again."
It was actually harder than being in the rehab place, in the rehab facility because in rehab everyone around you is dealing with the same thing you're dealing with. Plus every time you make a move, if you have trouble with it, there's help. I walk into this house where I would have 50 people over for Thanksgiving, and do all the cooking and do all the cleaning. And I love—my home was everything for me and my family and loved ones. I looked at the floor, and I couldn't scrub it on my hands and knees, and I loved to do those things, that was my working out. It was so hard for me to accept the fact that I couldn't—I used to cook all day on Sundays for the week and I couldn't do that. So learning how to be in my home feeling like I was caring for it was the hardest part. Everybody talks about going home as if it's the end-all-be-all to your joy, and it's probably the hardest depression that you deal with because nobody talks about that before you go home.
You have to really be careful of what kind of wheelchair you're getting. I went home with what's called an A-4. It's 45 pounds, it's big and its clunky; it's not something that you're going to put in your car when you're driving or what not. I'd, I'd say the big thing is to get a wheelchair that's going to suit you and what you're going to be doing. I had to, my brother, my twin brother, purchased a wheelchair for me that I can fold up and put in my car and drive around. So, really be careful of what you're getting, because it's going to be with you for a long time.
Slowly adapted. About a week after my friend came over and told me that life goes on, I had been sitting at home still, and at the same time every day, about 2:30, the school bus comes by and drops off the elementary school children in front of my house. They spill off the bus, wrestling and playing with one another, and I saw it. That’s life! It’s going on. It’s right there. It’s on the other side of this glass, and it’s going to be up to me to get through there, and out there and engaged in life. And even though there’s not a therapist here holding my hand, helping me learn how to do it, I just need to take everything I have learned up to this point from my rehab experience at Shepherd Center and apply it to my every moment of being. And then I can slowly start to adapt to my life, or really adapt to my life.
I guess me being independent, and then, everybody was looking up to me about football and just being popular in school. To have a body brace on and not be able to do anything for myself, not even push the wheelchair because in the hospital I had the electric chair. So, it was like whole new difference for me. Like, people that saw me probably didn’t judge or looking any different, but just me, how I felt, it was like I went from football, to being popular, to in a wheelchair with a brace on and can’t even push myself. So, that was kind of—yeah, it was a hard time.
He became very depressed and kept talking about suicide. He had just moved here from getting his Master’s, just moved back home. His girlfriend of eight years, they had parted ways, not amicably. And, he went into a very deep depression. One night, I was in our family room, and I stood up to see what he was doing, and there were three police cars and an ambulance in our yard. He had taken my cell phone, and my husband’s cell phone, and the house phone outside with him, and he was on his cell phone with a friend from Massachusetts, and said he was going to commit suicide. She tried to call our house, she tried to call the cells, and then she called the police department where we lived, and they came and got him. Then he was institutionalized in a mental hospital for a week, and that gave him a perspective on life. When he came out, he had an entirely different perspective on life, and that he didn’t have it half as bad as some other people. So, we dealt with the mental health issues, on top of the physical issues.
The hardest part was getting back into school, just it was so hard. Kids, seniors and high school and high schoolers are, they just don’t know real life, you know, they don’t, they don’t understand. And I would have some friends that were awesome. And they would be in the bathroom with me, helping me, pulling my pants down and help me do things. Or help me get them up, or help me grab my butt and help me transfer into the car. But then I had others that I thought were my friends, and they were just like, “I don’t want to talk to her.” I saw that real fast was about friendships. And that was the hardest part as a 17-year-old.
The hospital released my grandma and my uncle, who had just been in that same accident. They were actually at home at my parent's house, so my house was totally another hospital. My uncle was sleeping in one bedroom; my grandma was sleeping in another bedroom; my sister, Stefany, was sleeping in another bedroom. Me and my two younger siblings, were sleeping in one bedroom and my parents were sleeping on the floor, right next to Stefany. It was very frightening to think that it was going to be like that forever.
It was really scary to both myself and my parents to be leaving the hospital environment where we had access to specialists at a moment’s notice, any time we needed them. And, I was having difficulty sleeping; I was just very anxiety-stricken to be going home. It was not nearly as bad as I thought it was going to be, and when we had issues that arose in the first couple of weeks I was at home, we had the skills to deal with those challenges.
Every time it rained, and I didn’t have my vehicle set up for me to be able to get out and about. So, when it would rain, and everybody was at work, and I couldn’t get out, that was pretty rough. It was probably the worst part was the rain. I still don’t like the rain, I just go get wet you know, so.
I think the thing that I recall that was an absolute disaster was…now I had been in hospitals since August, and I got to come home for Thanksgiving for, like, a day pass. And I’d bought this new house a month before the accident, and moved up to a big job up here in Oak Brook and everything with McDonalds. And, when I got home—and we rented a wheelchair van, did all that, my wife drove it and everything, it was a full-size van, the whole bit—and when I got home, it was a horrible experience—because I just looked at all the things I wanted to do, that I had planned to do for the house—“How can I paint?”—“How can repair this?”—“How can I take care of this?”—“The yard?” I was going to build a deck at the pool; I mean all that stuff was, it was really a hard, hard time. I kind of got really, I’ll say depressed after that first visit home; it was really tough. My wife certainly picked up on that, and she got worried about it and all that, too—worried about me, because I was pretty quiet after that.
Her twin brother was very worried before she came home, because they would spend a lot of times doing active things, clowning around or shooting hoops, they would shoot baskets; we had a basketball hoop on our driveway. He said, "Well what do I do?" He said, "Do I not do that anymore, do I just go out and do it without her?" He didn't touch that basketball not for about year after she came home, I think, before he finally felt comfortable to go out and shoot some baskets, knowing she couldn't do that. So lots of little things, where we had to make adjustments.
A lot of things did come with my injury, like not being able to get in and out of the house. And when it came down to that, I had to pay people to get me in and out of the house, and I couldn't come right outside because I was, due to the type of injury I got, I was kind of scared to go back into society; this was a gang-related shooting. I was afraid of seeing new faces, because I had a violently acquired injury, and the way I looked at other people then—I didn't know this person, and any day now I could end up in a worse situation from some, just, a silly confrontation, you know.
The hardest part honestly was he was here for six months because his injuries were so severe. My wife brought him home the day before Thanksgiving. We went to the Peabody for Thanksgiving dinner. Friday morning, I was leaving the house and he told me he was having some trouble. He’d been sick the night before and so, I ran back into the house on my way out, and he was already turning blue. So, we called 911, and I was trying to give him mouth-to-mouth and all that, and he was cold and blue. And I couldn’t get any air into his lungs even though my wife was trying to tell me what they were saying on the phone. And I could hear the ambulance coming, and I was able to get air into his lungs. I don’t know if you’ve ever done that, but you can actually feel the air going in there. And he kind of rolled his eyes and I said, “Talbot, just stay with me son. They’re almost here stay with me.” And so, they got there, he was still awake. I didn’t know how severe, I just knew he was cold and blue. And I told the guy, I said, “my couch, we had him on the couch.” I said, “look how much he was sweating on the couch.” And the man said, “no, he’s already urinated. Your son had died,” and that was tough. We thought he had pneumonia because he had a history of getting pneumonia. He had blood clots in both his lungs as it turned out. And so, they said they were able to take care of that in Memphis. And we thought everything was going to be a little bit calmer after six months here and being able to bring him home. And then that happened.
The house, just it, it sort of stopped running the way it had been running. You know, I had been there for five months kind of by myself, and then she came home and there was constantly people in the house, there was always strangers in our house. Coming in, coming out, this nurse, that nurse, good day, bad day—most of them bad—it was stressful. I felt like, what, you know, there was no normalcy to, to my life or to our lives. And she was living downstairs, and so there was nothing, there was no privacy, you know, for anybody. It was, and it was just sort of the three of us, and there was a lot of stress.
The physical environment is probably one of the biggest challenges. Once you start using a wheelchair, it continues to be one of the biggest challenges. When I had my injury we were living in a townhome; townhomes by their nature tend to be very inaccessible. So, we set out pretty quickly to look for new living arrangements. But I had to go back to an inaccessible townhome and, you know, just deal with the stairs for the duration of the time that we lived there, which was another, I think, four or five months until we were able to find something.
The realization of going back to a small town, even though you know a lot of people, Maggie was the only spinal cord injury that I’m aware of—teenager. But the hardest thing about being home was just friends come and go. People are so caught up in their own lives that they really don’t have the time, or the—they care, but to be involved, truly involved as a friend is a lot more difficult than people tell you.
I think the hardest part when my husband first came home was the chaos with the caregivers in and out of the house, the supplies, and where are you going to put everything. And, there's so much chaos, and disorganization, and ever body—well wishers—and I just needed some time.
The hardest part about coming home was the fear of how are we going to handle everything, and even though I had a background in nursing, I didn’t feel confident at all. And Marie insisted on having an aide come in the morning to help her and then the aide would leave. And then it was just she and I for the rest of the day, and I was just so concerned about being able to meet all of her needs, and to do all the things that needed to be done, and to be able to make her life better than it was. I did okay. I think there were times when I was in the way too much. Marie wanted some privacy and I was afraid to even leave the room. Eventually that leveled out but it was a very, very difficult time of adjustment.
Just to go outside, get outside is a goal for you. I just figured it out, like I need to butt-scoot, and I found out they had cushions that you could put under you, because even though you're paralyzed, you can still feel that pain. I scooted down 45 stairs, them 45 stairs is a trip, but the catch is what you going to do with the wheelchair going down 45 stairs because you can't leave up with you. I used to put a string on the back of the chair, and put it around my neck and tried to hold it when I was going down, because you're going to need both hands to move your legs and keep yourself balanced. So I figured my neck and shoulders could probably hold a forty-pound wheelchair, it worked out pretty good though, worked out pretty good. And, coming up, it was a little harder coming up than going down. Actually, it was hanging off my neck like a chain, so I had it wrapped to the back of the chair and I would pull it up as I'm coming.
One of the hardest things about coming home was the fact that I am not in the hospital anymore. Does that mean that this state that I am in, this paralysis, does this mean it is permanent? Because it has a more permanency when you take something home. You know, so, that was one of the "oh my gosh" moments. And the other moment was bumping into things all the time, you know, like not being in control of my personal space. That was very, very difficult for me, and I am supposed to be the mom, you know, and needing help in the beginning was very, very difficult for my pride.
Having strangers in your house, nursing that we had to have, that's one of the biggest, hardest things to ever to go through. You no longer have any privacy. Your home is no longer your home, it's now somebody else's, it's not your home, you don't have that privacy. I have my bedroom that's my space, when my door is shut, they know, unless it's something very important, do not knock, I need my privacy time.
I guess the main thing; I just wanted to be as independent as possible, so getting home at first was pretty hard. At first, I was in a power chair more; I didn’t have much upper body strength because I didn’t start really doing my outpatient physical therapy, and strengthening and stuff like that. I guess the hardest part about being at home was adjusting to everyday life. I didn’t really want to be a burden on my wife or anyone else, so I always wanted to be as independent as possible. That was always my goal.
You leave when insurance companies say, “Your time is up.” You’re dropped off at home with the essential medical equipment: a bed, maybe a wheelchair, a loaner or something like that. That doesn’t mean that your house is prepared for that. In fact, she couldn’t leave the room. The night that she was brought home, I had to tear out some door frames, so they were wide enough for the wheelchair to pass through them. So, I had some deconstruction to do, I wasn’t worried about reconstruction.
It may be the accessibility side of it. Convenience, especially in our culture, or our society is something that we’re used to. And then when life completely changes in an instance, you don’t know what you need. But we found out what we needed pretty quickly, and that was probably about the hardest part, I would say.