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What are the most difficult psychological obstacles for families to overcome after spinal cord injury?
Well families are dealing with the same questions and fears—“What does the future hold?” And for them wondering if they can be of assistance, what they can do, how is it going to affect their lives. And they’re also dealing with real-life questions such as, for many individuals, even the basics of—“How do I drive the person around? How do I get them into the house? How do I care for their basic needs?” So at the beginning they're dealing with very practical needs and major concerns that we need to help them with. Going on, there are questions of—“What does the future look like?” “What is this individual going to be able to do?” “What’s my life going to be like?” We’re all trying to look into the future and unfortunately very few people know other individuals with spinal cord injury, so they don’t really have anything to turn around and look to. And if you look into some of the things you might find on the internet, it may speak to your fears but not be related to what’s going to help you. If we can find positive resources where they can talk to individuals who have had spinal cord injury or family members—that can be very helpful.
One of the things that I’ve learned from people sharing their emotions with me is that trust—how do you bridge trust with people that you’ve just met? That’s going to be a challenge, and you’re going to have to test me out, you’re going to test the team out. And when we make mistakes, you need to be a part of the family, part of the team, and tell us. Tell me if I miss something—that’s ok in the sense that I’m human, it’s not okay if I don’t correct it, so I need your help in that.
Sometimes it is the new role, that you have people who have to do things in a new way. Sometimes we feel a lot more comfortable getting mad at family members than we do at caregivers, nurses. We show our irritation to them because we know that they’re going to come back, that that’s okay, they know the breadth of our personality. But when that happens too long, then it becomes a problem. And so sometimes it’s thinking about—okay, you’re in this together, how do you make it work? And, I guess that’s one of the main things I try to think about it. It’s not one person or the other, it’s you’re both in this together—how does this work as a system.
Probably the biggest psychological obstacle for families is trusting that their family member isn’t going to break again. That you can still hug this person; they’re not going to fall apart. You can still tell them to take out the trash, make demands on them like you would within the limits of their actual physical abilities. But, you can demand that they be a fully functioning part of the family and the relationship.
Say someone is a breadwinner who is injured and the spouse is home taking care of children. What happens in terms of financial stability? What happens in terms of division of labor? What happens if the spouse who is not injured has go work, how does child-rearing occur? The cascade after this kind of injury, it is profound, and it affects everyone in the family in very unique idiosyncratic ways. That’s the beauty and richness of families is that they’re so different, so diverse.
Lots of times the biggest challenge for a family member is how to know how best to help. What does this person need from me at any given time? Do they need me to be sad with them? Do they need me to push them? Do they need me to be the cheerleader when they’re down? Do they need me to join in that experience? So I think for families, it’s often times not knowing how to be there for the person.
Certainly one thing that is important to clarify is that it’s not necessarily diagnostic, a lot of what we see is an adjustment, or it’s a response to these major changes in these peoples’ lives. So I might see some anxiety in family members, and often times anxiety might play out where the family is very involved in the patient’s care, and they may not be allowing the person to be as independent as possible. Because they’re jumping in and trying to do everything for them because they’re so worried about their loved one’s well being. Or anxiety can kind of play out as withdrawal, or maybe they’re not as engaged with the team and with their loved one in rehab or long-term planning, because it’s too overwhelming to think about what these things might look like down the road. The family has to conceptualize the changes with the injury too. Or sometimes it can look like irritability. It can be a lot of pressure when you’re trying to think of these different roles of—say that you’re female caregiver of mom taking care of maybe your extended family, being a wife and a caregiver. And, “How do all these line up?” “How do I have my identity of a wife while also helping with very intimate care activities such as bowel and bladder management?” And so it’s important to have open communication about this, so that we can address any of the concerns that come up and validate that these are really normal experiences to go through.
Family members have more sadness, more depression in the sense of grief. Some of them will have even some guilt associated with that grief that somehow they weren’t able to be there to prevent their family member from becoming disabled or not being able to give them the fix—especially parents, they think that they are somehow supposed to protect and give their children everything they need to cope in life, and this is one of the times they can’t do that.
For families it's extremely difficult to deal with their own depression, their own anger, they're angry that their loved one is hurt-we want to fix, we want to make it better. So making sure that we're taking care of ourselves is really, really important. More often than not we have caregiver burnout, and you'll hear that phrase, but it's really just that pure exhaustion, not taking care of ourselves, not getting the help we need, not speaking with our friends, not finding a best friend who can support me on the side.