There’s always hope… Encouragement after TBI

There’s always hope… Encouragement after TBI

 

By Bill Herrin

 

My dad would often tell me not to get discouraged, and as a young man, I didn’t understand why…sometimes it made me frustrated. What he knew (that I didn’t at the time) was that he was preparing me for discouraging times in my life. This was a part of his legacy as a dad, and he was laying the groundwork for doing his best to impart positivity and hope into my character…whatever may come! Not everyone has this kind of person in their lives, but many of us can be our own encouragers through positive self-talk, thoughts, prayers, and by being encouraging to others.

There’s no magical solution for encouragement – you start by taking a situation that you’re going through, and start dissecting it. By asking yourself “how bad is this, really?”, you start to see things for what they are. If your emotions cloud your outlook, you may give up the fight, or just become tired of working to keep things positive. Let’s face it – brain injuries of any kind are no “walk in the park.” For many, progress is slow, or even elusive. Finding some redeeming things in your life is the first step to realizing that there are also things to be thankful for, despite any other negative issues that have placed you in this “new normal”.

Let’s take a look at some ways that can be encouraging for you, a person that you may take care of (as a caregiver), or maybe just to encourage a loved one or spouse. Remember that every TBI is different, as well as every personality…there are no two situations that are exactly the same. The goal is to paint with a broad brush, and point to ways of encouragement that most likely will apply to most TBI survivors, and the challenge to you is to apply them appropriately to your situation! It’s never a “cut and dried’ kind of thing when you’re dealing with TBI, and unfortunately, there will be suggestions here that will absolutely not apply to some survivors at all. With that said, let’s plod ahead, and plot our path toward being more encouraged…or being more encouraging to someone else. Let’s find some inspiration!

  • Negativity can easily creep in, when there’s not enough progress after a TBI. Negative attitudes can be the norm, as people wear down when they’re dealing with pain, loss, stress, impulsive behavior, lack of motivation, poor self-awareness, and their overall recovery. For a caregiver, spouse, or family member, you can reinforce positive behavior on their part by maintaining your patience with them…stopping negative behavior by modeling patience and good behavior can be tough to maintain, but it can pay off by easing the overall household stress level. If you’re on working toward increasing positivity on your own (as a survivor), one of the main things to keep in mind is that change will be incremental. Implementing total change in one fell swoop is a daunting task, and will most likely lead to failure…and more negativity. Small steps toward your goal will not only give you confidence that positive change is occurring, but others will see it as well…you’ll know that you’re making progress, and others will reinforce that by seeing it as well. Change begins with you. That’s encouraging!
  • Finding joy in small things can be a stepping stone to other “wins” in your journey toward a more positive outlook after TBI. Let’s say, for example, that you’re having a hard time using a TV remote – the channel select button is hard to press when you’re holding the remote. Finding a workaround sounds simple enough, and if it can reduce your stress…then try doing something differently. In this case, maybe holding the remote with both hands. The point is that trying different ways to approach everyday (small) issues can build confidence and positivity. It will give you insight into building up to working on larger items on your list that you’d like to conquer…it’s always going to be one step at a time!
  • When feeling irritable or stressed out (which can be a huge problem after a TBI), strive to remember that lashing out at others creates more of the same. Keep in mind that your challenges don’t have to define you as a person…sure there are issues to deal with every day, and some are huge. Pain, mental clarity, uncontrollable emotions – they all come into play, but awareness of negative thoughts that are brought on by these things can be the first step toward minimizing how you react to them – which brings more self-control. When you feel that you’re managing your actions, despite how you’re feeling (not an easy thing) – you’re going to become a more positive person, and you’ll start working your way in the “the zone” of actually being more encouraged by taking positive actions on your own. When you own your behavior, you’ll learn to control it, albeit incrementally. That’s finding a more positive you through self-change, and impacting your surroundings with behaviors that breed more positivity (from family, friends, etc.). It’s a synergy that breeds encouragement for all involved.

• When it comes to caregivers, spouses, family or friends – consequences of bad behavior from a TBI survivor will sometimes be met with more bad behavior. Negativity breeds more of the same. Outbursts from a TBI survivor, for instance, that are met with an outburst in reply, can be the rocket fuel that makes everything spin out of control very fast. As a person in the life of a survivor, you have to remember everything that the survivor is experiencing is very difficult, and weigh your responses accordingly. Sure, you can reply firmly when a behavior is totally inappropriate, offensive or even dangerous to themselves (or others), but the goal of bringing them to a point of having a more positive outlook is going to require patience from you, as well as them.

Here is a short, but excellent checklist of tips for caregivers (excerpted from Caregiving After Brain Injury, A Survivor Guide (By Carolyn Rocchio)

Tips on managing caregiving…

✓ Model behaviors you want to see.

✓ Reinforce behaviors you want to see increase.

✓ Structure the environment and use cues for positive behaviors.

✓ Plan rest periods.

✓ Ignore behaviors you want to decrease when safety is not an issue.

✓ Avoid situations that provoke behaviors you are trying to reduce.

✓ Redirect rather than challenge the person.

✓ Seek professional help sooner rather than later.

 

Caregiving requires lots of patience and understanding. It is normal to have many feelings of resentment, sadness, and grief over the loss of the person you knew and loved before the injury. It is not always easy to learn to love this new and different person. With time, strength and endurance, most caregivers find comfort in knowing their job is improving the life of their family member with a brain injury.

In closing, survivors of TBI have negative and positive options to approaching their recovery, and rebuilding a life is a “do it yourself project” for the most part – all other players in their lives can give care, encouragement, and as much help as possible, but in the end the survivor will determine their path to recovery (and it will depend on their outlook and overall cognition). By not focusing on the past, and living in the present (in their “new normal”), TBI survivors have a shot at making a new and satisfying life. Not necessarily the life they had before, but through encouragement and work, they can at least find as much contentment as possible. As my dad always said: don’t get discouraged. A simple, but clear statement of encouragement that can carry you through the rest of your life. Own it!

3 responses to “There’s always hope… Encouragement after TBI”

  1. Related Content:
    Sleep and Brain Injury
    Fatigue After Brain Injury: BrainLine Talks With Dr. Nathan Zasler
    How common are sleep problems following at TBI?
    Many people who have brain injuries suffer from sleep disturbances. Not sleeping well can increase or worsen depression, anxiety, fatigue, irritability, and one’s sense of well-being. It can also lead to poor work performance and traffic or workplace accidents. A review of sleep disorder studies and surveys suggest that sleep disorders are three times more common in TBI patients than in the general population and that nearly 60% of people with TBI experience long-term difficulties with sleep. Women were more likely to be affected than men. Sleep problems are more likely to develop as the person ages.
    What are types of sleep problems?
    Sleep disturbances have been found in people with all severities of brain injuries — from mild to severe. Sleep is a complex process that involves many parts of the brain. For this reason, and depending on the location and extent of injury, many different kinds of sleep disturbances can occur after brain injury.
    Common sleep disorders include:
    Insomnia: Difficulty with falling asleep or staying asleep; or sleep that does not make you feel rested. Insomnia can worsen other problems resulting from brain injury, including behavioral and cognitive (thinking) difficulties. Insomnia makes it harder to learn new things. Insomnia is typically worse directly after injury and often improves as time passes.
    Excessive Daytime Sleepiness: Extreme drowsiness.
    Delayed Sleep Phase Syndrome: Mixed-up sleep patterns.
    Narcolepsy: Falling asleep suddenly and uncontrollably during the day.
    Common sleep syndromes include:
    Restless Leg Syndrome (RLS): Urge to move the legs because they feel uncomfortable, especially at night or when lying down.
    Bruxism: Grinding or clenching teeth.
    Sleep Apnea: Brief pauses in breathing during sleep, resulting in reduced oxygen flow to the brain and causing loud snoring and frequent awakening.
    Periodic limb movement disorder (PLMD): Involuntary movement of legs and arms during sleep.
    Sleepwalking: Walking or performing other activities while sleeping and not being aware of it.
    What causes sleep problems?
    The brain directs sleep by putting your body to rest. Injury to the brain can lead to changes in sleep.
    Physical and chemical changes
    The “internal clock” in the brain controls when people sleep and wake every day. If injured, the brain may not be able to tell the body to fall asleep or wake up. There are chemicals in our body that help us to sleep. An injury can change the way that these chemicals affect the body. If brain mechanisms for starting and stopping sleep are injured, a condition called post-traumatic hypersomnia may result in which a person sleeps many hours more than normal.
    Changes in breathing control
    Sometimes the brain’s ability to control breathing during sleep becomes altered after a TBI, resulting in periods of apnea (when breathing actually stops for long enough for blood oxygen levels to drop). This is called sleep apnea. Other factors may affect the chance of having sleep apnea such as family history or being overweight.
    Medications
    Medications taken after a brain injury may cause problems going to sleep or staying asleep, or can make people sleepy during the day and unable to participate in activities.
    Prescription drugs for treating asthma and depression may cause insomnia. Also, stimulants that are meant to treat daytime sleepiness can cause insomnia if taken too close to bedtime. These problems can often be avoided by adjusting the timing of the medication or by substituting a different drug — of course, in consultation with your physician. Many other medications can cause sedation (sleepiness), as well.
    Most over-the-counter sleep aid medications contain an antihistamine (commonly diphenhydramine) and are not recommended for people with TBI because they may cause disturbances in memory and new learning. Retention of urine, dry mouth, nighttime falls and constipation are also possible side effects of this class of medications.
    Daytime sleeping (napping) and physical inactivity
    Napping during the day is likely to disturb sleep at night. Inactivity or lack of exercise can also worsen sleep.
    Pain
    Many people who have suffered brain injuries also experience pain in other parts of the body. This discomfort may disturb sleep. Medications taken to relieve pain may also affect sleep.
    Depression
    Depression is much more common in persons with traumatic brain injury than in the general population. Sleep problems such as difficulty falling asleep and early morning waking are common symptoms of depression.
    Alcohol
    While alcohol may help bring on sleep, drinking alcohol before bedtime is likely to interfere with normal sleep rather than improve it.
    Caffeine and Nicotine
    Nicotine from tobacco may cause sleep disturbances and is often overlooked. Caffeine can disturb sleep when consumed in the afternoon or evening.
    What can be done to improve sleep?
    Changes in behavior and environment are the first line to treating sleep difficulties.
    Daytime Suggestions
    Set an alarm to try to wake up at the same time every day.
    Include meaningful activities in your daily schedule.
    Get off the couch and limit TV watching.
    Exercise every day. People with TBI who exercise regularly report fewer sleep problems.
    Try to get outdoors for some sunlight during the daytime. If you live in an area with less sun in the wintertime, consider trying light box therapy.
    Don’t nap more than 20 minutes during the day.
    Nighttime Suggestions
    Try to go to bed at the same time every night and set your alarm for the next day.
    Follow a bedtime routine. For example, put out your clothes for morning, brush your teeth and then read or listen to relaxing music for 10 minutes before turning out the light.
    Avoid caffeine, nicotine, alcohol and sugar for five hours before bedtime.
    Avoid eating prior to sleep to allow time to digest, but also do not go to bed hungry, as this can also wake you from sleep.
    Do not exercise within two hours of bedtime but stretching or meditation may help with sleep.
    Do not eat, read or watch TV while in bed.
    Keep stress out of the bedroom. For example, do not work or pay bills there.
    Create a restful atmosphere in the bedroom, protected from distractions, noise, extreme temperatures and light.
    If you don’t fall asleep in 30 minutes, get out of bed and do something relaxing or boring until you feel sleepy.
    Talk to your doctor

  2. Every head injury is unique. The person who is head injured is the main person who should understand the full extents of his injuries, but that can be done only after he has received the proper assistance. If the assistance is not proper, that is not possible. Therefore it is very possible, without proper assistance that forever the person will be mired in a multitude of confusion, that can only be relieved when he is allowed to properly acknowledge his injuries…

  3. Pat Strenk says:

    Would appreciate comments on sleep inability issues. Used to be on antidepressants which helped me to sleep, but mood improved & no longer am. I take lots of supplements to help go to sleep, but then wide awake 2 hrs later. TBI/coma 28yrs ago, only off AD 1 yr., but thank goodness bc too many adverse side effects.

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