Patience and Persistence Are Key for Caregiving

I've been impressed with many caregivers at how much they've been able to do, and part of what happens is they experience a prolonged period of stress, maybe 2 years, 3 years, 4 years, 5 years. It's basically prolonged stress, and I've been impressed by how well they can manage things, and basically what people do is they figure out what their priorities are. Their children have to get breakfast. Their children have to get dinner. Their children have to get to school and back, and they have to get their homework done, so many times what the uninjured caregiver will do is just focus on priorities, the day to day things, paying the bills. If you don't pay the electric bill, then the air conditioning and many other things don't work, and what I've found is that there's a term that's called self-abnegation. It basically means not thinking at all about yourself and focusing on the needs of others, and that's what many wives of people with brain injury will do is they will focus on others, the person with the injury. They have a great sense of duty, a great sense of obligation. Many people--many caregivers, or at least some caregivers, have friends that have stuck with them, and what I normally tell people is don't be too cautious about asking for help. Try to get some help. It's really hard to do things on your own. Get support from other people, and recognize that many people have been successful. There's a lot of adversity but a big part of it too-- we have this expression that we use a lot, and it's not a new idea. Timing is everything, and what I find that's really difficult is that people have this idea that they want their lives back to normal like yesterday, and that's just not possible, so part of what I tell people is with patience and persistence, many, many things are possible, and so part of what I try to do when I work with spouses is to recognize that they're doing their best, to give them credit, because many will feel guilty. Why can't I do more? Why can't I handle more? To recognize that they're trying their hardest. I try to help people recognize the things that they're doing that are not working and to recognize that over time if they focus and they're persistent and they use all these good strategies that they're using that things will get better. It's really important for people to have hope.

The prolonged period of stress after a loved one has a TBI can last years. Asking for help, being patient and persistent, and knowing that life may be different but it will get easier and better are crucial points for caregivers.

Jeffrey Kreutzer

Jeffrey Kreutzer, PhD is the Rosa Schwarz Cifu Professor of Physical Medicine and Rehabilitation at Virginia Commonwealth University, Medical College of Virginia Campus, and professor of Neurosurgery and Psychiatry. He is director of Virginia's Traumatic Brain Injury Model System.

Posted on BrainLine July 30, 2012

Produced by Victoria Tilney McDonough, Justin Rhodes, and Ashley Gilleland, BrainLine.

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