Recovery from a spinal cord injury is unpredictable and can be frustrating.
Those who provide care for a loved one with a brain injury can gain insight and encouragement from these tips from a longtime rehabilitation case manager.
Listen in as Bridget Metzger, CCM, discusses how you can help a survivor of a spinal cord injury.
Selected Podcast
Tips for Caregivers of People with a Spinal Cord Injury
Featured Speaker:
Bridget Metzger, CCM
Bridget Metzger is a case manager in the Acquired Brain Injury Program at Shepherd Center. She is also the former director of injury prevention and education. Before that, she worked as a case manager in the Spinal Cord Injury Program at Shepherd Center for four and a half years. Bridget has a bachelor’s degree in journalism from San Francisco State University and a master’s degree in rehabilitation counseling from Georgia State University. She is a certified case manager, a licensed professional counselor and a certified rehabilitation counselor. Bridget sits on Georgia State University’s Certified Rehabilitation Counselor Advisory Board, the injury prevention sub-committee of the American Spinal Injury Association, and the Georgia Brain and Spinal Cord Injury Trust Fund Commission’s Advisory Board. Transcription:
Tips for Caregivers of People with a Spinal Cord Injury
Melanie Cole (Host): Recovery from a spinal cord injury can be unpredictable and very frustrating. Those who provide care for a loved one with a brain injury can gain insight and encouragement from these tips from a long-time rehabilitation case manager. My guest today is Bridget Metzger. She’s the case manager in the Acquired Brain Injury program at the Shepherd Center. Welcome to the show, Bridget. Let’s speak about people with spinal cord injury. When they come home, what is the expectation about their abilities and the need that a caregiver will have to give?
Bridget Metzger (Guest): Well, it really depends on the person’s injury. Every injury is individual to that person. Some people have very high spinal cord injuries that require a lot of dependent care, or very severe brain injuries that require a lot of care and supervision, and others just need minimal assistance, things like help with grocery shopping and cooking and things like that. It really depends on the individual.
Melanie: Do you recommend that people hire a caregiver or do you think that it’s something that if you love somebody, you can care for them yourselves? Or do you really recommend that they hire a professional, someone who knows what they’re doing?
Bridget: That also really depends on the person and their injury and it also depends on the family relationship and it depends on finances, funding. Can you afford to hire a caregiver? There are a lot of different things to look at. If you’re thinking of using a family member, say, a spouse as a caregiver, some of the benefits are that that someone is familiar to you, they’re in your household already, you’re not having to pay out of pocket. Some of the cons of going that direction are that it’s going to change the relationship, particularly if you’re doing a lot of intimate care like bowel and bladder care. That can really change a marriage. It may change the power dynamic between a husband and wife and cause potential problems between their interpersonal relationships. Those are the kinds of things you have to think about. Funding is a huge issue. Insurance does not typically cover caregiving, so some families have no other option but to use a family member or spouse as a caregiver.
Melanie: If the funding is there, if they are able to hire somebody, give them some tips on how to successfully hire and manage a personal care assistant for people with spinal cord injury, because as someone who has done this myself so many times, hire caregivers, it’s not an easy task to find somebody that not only you feel will help your loved one but that you can get along with on a day-to-day basis yourself.
Bridget: Absolutely. That’s an excellent point. First, you have to decide: If the goal is to hire someone, you have to decide if you’ll hire a private individual or if you’ll go through an agency. Again, there are benefits and cons to both. Going through an agency, you typically will have access to more caregivers so that if somebody is sick or something falls through, there’s always that backup person that can come in and be there for you, so you’re not left on a lurch. Whereas, if you have a private caregiver, some of the positive to that are it may cost less. You may be able to offer room and board in lieu of cash as part of the payment and you can develop that very personal relationship with that person. You really have to look at what works for you, how much care you need, how important is it that you have someone there every single day that you can rely on.
Melanie: What kinds of things should you be expecting this caregiver to do? Do you expect to pay them more if they’re going to be doing shower and bath duties or is that part of the gig?
Bridget: I think shower and bath duties are generally part of the gig. The most important thing to do before hiring any kind of caregiver is having a very clear checklist written out of what your care needs are and making sure that that caregiver is: a) comfortable to do those things, because they may be doing things like bowel care and bladder care; also, that they’re competent to do those things. Ideally, you would have them trained while you’re still in the hospital recovering from your injury and they could train with your inpatient hospital team, your therapist and your nurses, to make sure that they have a very, very clear picture of what those care needs are and to show you that they can actually perform all those care needs. Then the hourly rate is a negotiation. It depends on where you are in the country. It depends on if they’re going through an agency, there may be a set rate, or if it’s a private caregiver, they may have some flexibility, depending on what your needs are, how many hours you need, and that type of thing.
Melanie: If you yourself have to be the caregiver, what do you think is the most important thing you tell people when they are going home to care for their loved one? What is the best piece of information you tell them about being a caregiver?
Bridget: Well, it sounds so simple, but the best thing that they can do is they’ve got to take care of themselves and their own health first, because if they aren’t getting enough sleep, if they’re running themselves down physically, there’s absolutely no chance that they’ll be a successful caregiver for this newly injured person. So, getting enough sleep, taking care of your body, having a plan for respite because no one can do 24-hour/7-day a week care for anyone, no matter how much you love them and no matter what your funding situation is. It’s really coming up with a comprehensive plan for not only how will I get through the first week, but how will I do this for a year? How will I do this if funding changes or if this other backup caregiver backs out? So, having plan A, B, and C so that you can continue to do this over the long haul because nine times out of 10, our patients will need this care over the long haul.
Melanie: Speak about a hiring guide. When you’re interviewing these caregivers, whether you’re using a private company or someone the hospital recommends, what kinds of questions do you need to ask that caregiver about their background, or what they are willing to do? And give us some resources for hiring and helping hire a caregiver for our loved one.
Bridget: Sure. I think important things to find out are what type of experience does the person have, or the agency? Have they worked with patients like this person before? What is the availability? Are they able to work all the days of the week and any time? Or is there any sort of limit to that? What about transportation? Do you have your own transportation? Do you have transportation that would be accessible for this injured person so you can get them to and from doctor’s appointment or therapy? All those types of things are important, again, making sure that they are comfortable with all the different pieces of care and being able to perform that. Ways that you can find a caregiver are: interviewing agencies. I always help families pick out three agencies or I can give you three agencies at least and interview each one to find out exactly what the ins and outs are there, what the costs are, how they can help you, how they can be flexible for you, finding out what the costs are. You can do things like if you’re looking for a private caregiver, you can put an ad on craigslist. You can talk to support groups in the area, find out from other people who’ve been through this before, who do they use, what’s worked for them, and how did they find these people, and also getting online is always important. If you have Medicaid, there are waiver programs out there that can provide care that can be much more cost-effective than hiring privately.
Melanie: Best advice, Bridget, please, in the last minute or so, for people who are looking for a caregiver or going to be a caregiver themselves for a loved one with spinal cord injury.
Bridget: I think it’s education, doing all the research that you can possibly do to learn about care, to learn about funding alternatives, and to get support. There are some great resources out there like the Caregiver Action Network, the Family Caregiver Alliance—you can find both of these groups online—the American Spinal Injury Association. There are just endless resources. Arm yourself with information, making sure you take care of yourself and making sure that your loved one’s needs are met and can be met over the years to come.
Melanie: Thank you so much. You’re listening to Shepherd Center Radio. For more information, you can go to shepherd.org. That’s shepherd.org. This is Melanie Cole. Thanks so much for listening and have a great day.
Tips for Caregivers of People with a Spinal Cord Injury
Melanie Cole (Host): Recovery from a spinal cord injury can be unpredictable and very frustrating. Those who provide care for a loved one with a brain injury can gain insight and encouragement from these tips from a long-time rehabilitation case manager. My guest today is Bridget Metzger. She’s the case manager in the Acquired Brain Injury program at the Shepherd Center. Welcome to the show, Bridget. Let’s speak about people with spinal cord injury. When they come home, what is the expectation about their abilities and the need that a caregiver will have to give?
Bridget Metzger (Guest): Well, it really depends on the person’s injury. Every injury is individual to that person. Some people have very high spinal cord injuries that require a lot of dependent care, or very severe brain injuries that require a lot of care and supervision, and others just need minimal assistance, things like help with grocery shopping and cooking and things like that. It really depends on the individual.
Melanie: Do you recommend that people hire a caregiver or do you think that it’s something that if you love somebody, you can care for them yourselves? Or do you really recommend that they hire a professional, someone who knows what they’re doing?
Bridget: That also really depends on the person and their injury and it also depends on the family relationship and it depends on finances, funding. Can you afford to hire a caregiver? There are a lot of different things to look at. If you’re thinking of using a family member, say, a spouse as a caregiver, some of the benefits are that that someone is familiar to you, they’re in your household already, you’re not having to pay out of pocket. Some of the cons of going that direction are that it’s going to change the relationship, particularly if you’re doing a lot of intimate care like bowel and bladder care. That can really change a marriage. It may change the power dynamic between a husband and wife and cause potential problems between their interpersonal relationships. Those are the kinds of things you have to think about. Funding is a huge issue. Insurance does not typically cover caregiving, so some families have no other option but to use a family member or spouse as a caregiver.
Melanie: If the funding is there, if they are able to hire somebody, give them some tips on how to successfully hire and manage a personal care assistant for people with spinal cord injury, because as someone who has done this myself so many times, hire caregivers, it’s not an easy task to find somebody that not only you feel will help your loved one but that you can get along with on a day-to-day basis yourself.
Bridget: Absolutely. That’s an excellent point. First, you have to decide: If the goal is to hire someone, you have to decide if you’ll hire a private individual or if you’ll go through an agency. Again, there are benefits and cons to both. Going through an agency, you typically will have access to more caregivers so that if somebody is sick or something falls through, there’s always that backup person that can come in and be there for you, so you’re not left on a lurch. Whereas, if you have a private caregiver, some of the positive to that are it may cost less. You may be able to offer room and board in lieu of cash as part of the payment and you can develop that very personal relationship with that person. You really have to look at what works for you, how much care you need, how important is it that you have someone there every single day that you can rely on.
Melanie: What kinds of things should you be expecting this caregiver to do? Do you expect to pay them more if they’re going to be doing shower and bath duties or is that part of the gig?
Bridget: I think shower and bath duties are generally part of the gig. The most important thing to do before hiring any kind of caregiver is having a very clear checklist written out of what your care needs are and making sure that that caregiver is: a) comfortable to do those things, because they may be doing things like bowel care and bladder care; also, that they’re competent to do those things. Ideally, you would have them trained while you’re still in the hospital recovering from your injury and they could train with your inpatient hospital team, your therapist and your nurses, to make sure that they have a very, very clear picture of what those care needs are and to show you that they can actually perform all those care needs. Then the hourly rate is a negotiation. It depends on where you are in the country. It depends on if they’re going through an agency, there may be a set rate, or if it’s a private caregiver, they may have some flexibility, depending on what your needs are, how many hours you need, and that type of thing.
Melanie: If you yourself have to be the caregiver, what do you think is the most important thing you tell people when they are going home to care for their loved one? What is the best piece of information you tell them about being a caregiver?
Bridget: Well, it sounds so simple, but the best thing that they can do is they’ve got to take care of themselves and their own health first, because if they aren’t getting enough sleep, if they’re running themselves down physically, there’s absolutely no chance that they’ll be a successful caregiver for this newly injured person. So, getting enough sleep, taking care of your body, having a plan for respite because no one can do 24-hour/7-day a week care for anyone, no matter how much you love them and no matter what your funding situation is. It’s really coming up with a comprehensive plan for not only how will I get through the first week, but how will I do this for a year? How will I do this if funding changes or if this other backup caregiver backs out? So, having plan A, B, and C so that you can continue to do this over the long haul because nine times out of 10, our patients will need this care over the long haul.
Melanie: Speak about a hiring guide. When you’re interviewing these caregivers, whether you’re using a private company or someone the hospital recommends, what kinds of questions do you need to ask that caregiver about their background, or what they are willing to do? And give us some resources for hiring and helping hire a caregiver for our loved one.
Bridget: Sure. I think important things to find out are what type of experience does the person have, or the agency? Have they worked with patients like this person before? What is the availability? Are they able to work all the days of the week and any time? Or is there any sort of limit to that? What about transportation? Do you have your own transportation? Do you have transportation that would be accessible for this injured person so you can get them to and from doctor’s appointment or therapy? All those types of things are important, again, making sure that they are comfortable with all the different pieces of care and being able to perform that. Ways that you can find a caregiver are: interviewing agencies. I always help families pick out three agencies or I can give you three agencies at least and interview each one to find out exactly what the ins and outs are there, what the costs are, how they can help you, how they can be flexible for you, finding out what the costs are. You can do things like if you’re looking for a private caregiver, you can put an ad on craigslist. You can talk to support groups in the area, find out from other people who’ve been through this before, who do they use, what’s worked for them, and how did they find these people, and also getting online is always important. If you have Medicaid, there are waiver programs out there that can provide care that can be much more cost-effective than hiring privately.
Melanie: Best advice, Bridget, please, in the last minute or so, for people who are looking for a caregiver or going to be a caregiver themselves for a loved one with spinal cord injury.
Bridget: I think it’s education, doing all the research that you can possibly do to learn about care, to learn about funding alternatives, and to get support. There are some great resources out there like the Caregiver Action Network, the Family Caregiver Alliance—you can find both of these groups online—the American Spinal Injury Association. There are just endless resources. Arm yourself with information, making sure you take care of yourself and making sure that your loved one’s needs are met and can be met over the years to come.
Melanie: Thank you so much. You’re listening to Shepherd Center Radio. For more information, you can go to shepherd.org. That’s shepherd.org. This is Melanie Cole. Thanks so much for listening and have a great day.