"It is not something you can prepare for and caregivers are stepping into a new role." Preparing emotionally for the change than accompanies a spinal cord injury is challenging for the individual with an SCI and for those thrust into the caregiver role. This video helps to set expectations for the caregiving role and maintaining self-care as the caregiver. This video again explores in a very personal way the "new normal" for individuals with an SCI and their caregivers.
The Living With a Spinal Cord Injury series is made possible by a gift from David and Barbara Loeb.
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Duckett: It's really tough. It's not something you can prepare for. You don't know what it's gonna look like. You just know that that's your family member or friend. Then now you have to step into this new role of taking care of them, and providing for them, and doing things for them that otherwise they'd be able to do for themselves.
Nurkowitz: I think it's critical that two things happen. One is to again clearly define what the expectations are in the caregiving role, and then also for them to maintain what they need to accomplish for themselves. And I think if you establish that at the at the onset of the caregiving role, then you can avoid a lot of conflict.
Afreda: Getting home, another new reality hit. She’s home, that's what I wanted, but I had no help. It took a while for a while at the kick in. Once it all kicked in, it was a godsend. Every little bit of help I could get. First of all, family was there from the jump, because they were there during the hospital stay and Jefferson. Then of course when I got home, then we were gonna get aides to come in, nurses to come. It was our new normal and it progressively got better.
Tyra: Therapy of course, physical therapy, occupational therapy, I had to go to the speech therapy - that was a big step - and then eventually I end up graduating and going to college and then I end up having a baby.
Duckett: We here at Jefferson Moss-Magee Rehabilitation, we provide training for family members, so that you know what the patient's limitation are. Or what that person living with a new spinal cord injury, what their limitations are, what they can, and can't do. But as far as preparing emotionally, it's really tough. It's really tough to prepare you emotionally because we may have all the pieces together. But when you go home, it's a new it's a new ballpark. You know here you're in a controlled environment and we're able to protect you and protect the patient. But when you go home, you have to learn how to maneuver on your own.
Brad: She is my girlfriend and the best caregiver I've ever had. This is it's just basically like a full-time job and she does it every day with a smile on her face. No complaints. I just, I couldn't ask for anything better, she takes the best care. She takes better care of me than I probably would.
Noelle: The hardest for me was seeing all the things that I've taken for granted, as far as everything, basically. Seeing what he has to go through. Like bowel routines, or even the simplest things, you know, we brush our teeth in the morning and it's definitely a task for him. So, I might have a bad day but that’s short-lived. He could just wake up, and just due to the weather, if it's too cold outside, every joint, every muscle, everything is like chronic pain every day sometimes. So, it definitely changes your perspective on what really is important in life and what you complain about.
Brad: So, she encouraged me to start this Instagram page because she just sees how much I want to help people and how it's important to me. It just gives me more of a purpose. I always see a lot of people who I just feel like have given up. And they just feel like that's kind of it. I just want to let them know that this is not it. There's a whole world out there, and the world is your, you know, you just gotta make it.
Duckett: Well, we at moss absolutely understand that when a person becomes newly injured, it can really put a financial strain on families, and we try to provide the patients with an array and families with an array of options for financial assistance. And I think that's a good thing to explore with your social worker as every individual is different and every family is different. So, there are resources that you may be able to qualify for. It's always good to talk to your social worker about that. Some resources include transportation services for patients to get to and from their appointment in a wheelchair van. Attendant services for them to have a need to provide assistance for them at home. There are home care services. There are also outpatient services. There's really an array of services for patients. It's always good to have that conversation with the social worker, so that you know what's out there for you.
Allison: It's one of those things where it just doesn't affect the person that it happened to. It affects everyone around that person.
Melissa: It's definitely something, it's a lot to take on, and I don't have any regrets about it at all. I obviously, I have my ups and downs, like anybody would. I wouldn't change it for anything. Fortunately, our situation allows me to be her full-time caregiver. I don't work part time. I'm with her basically 24/7. We're very lucky in that way, where other families or couples aren't.
Nurkowitz: I think it's incredibly important for that person to maintain their own sense of identity. I think what happens is they get lost in that caregiving role, and it becomes all in consuming. To the extent to where they're lacking sleep, they are lacking essential things that they must do for themselves in order to keep themselves healthy. Not just the basic things like sleeping and eating, but just fun things. Getting together with friends. Getting their nails done. Whatever is important to them and meaningful to them, I think is essential for maintaining that the positive attitude and for them to maintain a healthy caregiving relationship.
Duckett: It'll get better. It will get better. It'll become the new normal. You'll be able to, you know, the more practice, and the more you continue to provide caregiving for that person, you'll get better at it, and you'll find things that work for you.
Afreda: Never let them give up. Don't let them give up. Constantly talk to them. Let them know, you know this to show pass. Where there's life, there's always hope. Future to be independent and eventually be in her own place, where everything's totally accessible for her. But right now, you see this little small house we have, just isn't. Everything on one floor and I can see her doing it and being on her own and taking care of her child and its gonna happen. I can see it.