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Taking Care of Yourself

Taking Care of Yourself

Tracy
All right, next we’re going to talk about one of the most important things that you can do as a caregiver. The very best thing you can do to take care of your family member with TBI, and all the others members in your family that depend on you, is to take care of yourself.

Seriously spending all your time dealing with your family member’s needs can leave you feeling just absolutely drained.

Travis
My mom is the worst. Sometimes she doesn’t sleep for days, and I’ve seen her skip a lot of meals. She makes sure that me and my sister eat, but she always says that she’s not hungry. I mean I just think she just doesn’t want to leave Dad alone.

Michelle
Travis.

Travis
No mom. You told me that we need to be completely honest when we’re here, that’s what I’m doing. I’m worried about you.

Michelle
I know, honey. It’s just that I’m trying to be here for your Dad, and for you and for Emily. I’m feeling like I’m being pulled in a thousand different directions.

Tracy
So Michelle how are you sleeping?

Michelle
When I go to bed, things just run through my head. When I finally do go to sleep, I wake up in the morning with reality hitting me in the face, like I can’t believe this is happening. I get out of bed and just put one foot in front of the other, trying to get through the day. I know that I have to do a better job taking care of myself.

Tracy
Well thank you both for your honesty. You know taking care of yourself, both emotionally and physically, it can help prevent something that we call caregiver burnout.

Julie
I have to admit that I went through a burnout phase, when I just felt so hopeless. I hope you guys can avoid that.

Tracy
You know you’ve already taken a really important step to avoid caregiver burnout by joining a group. Talking with others about your feelings... that really can relieve the stress and it helps reduce the anxiety because it helps you know because it confirms the fact that you’re not alone.

Another thing you can do if your stress, your sadness, or your anxiety gets… gets to feel out of control... get some help from a counselor, a therapist, your spiritual leader, religious leader, or a social worker. 

Julie
It was a few months after Sam got hurt, that I realized I needed some help. I went and saw a psychologist and that was probably one of the best things I did. She helped me process some of the stuff that was going on, which made it easier for me to cope somehow.

I saw her for about 2 months, and I even got Carl to come along sometimes.

Carl
I was surprised, but it really helped. When we were less stressed, we started to sleep better, eat better, things like that.

Tracy
That’s great. You know you can be a much more effective caregiver when you’re healthy. Let’s talk for a moment about some of the behaviors that will help. Of course, like Michelle is discovering sleep is absolutely essential.

Megan
Yeah. I guess I just want to be there when Clayton wakes up, so I’m there almost all the time. And I really just use the Fisher House to shower, or eat once in a while.

Julie
I thought it was important that I was always there and awake in case Sam needed me. Turns out, I can think clearer, make better decisions when I’ve had some sleep and something decent to eat.

Tracy
That’s right. Absolutely right. You’ve gotta give yourself a chance to sleep, and eat as well as you possibly can. I mean overeating or eating a bunch of you know comfort food, or fast food that might be tempting right now, but just really please try to stick to a healthy diet. Of course, that can be a real challenge when you’re spending most of your time in the hospital.

But another challenge involves your activity, that’s really important, particularly important for caregivers because the exercise can help relieve the stress, reduce the depression. It doesn’t have to be strenuous. You know something simple. A 30-minute walk on most days is usually enough and you know you can break that 30 minutes into 10-minute segments, if that’s any easier. Break away, take that walk. And if you already have an exercise routine, try to stick to it. Doing things that were important to you before your loved one’s TBI can… can really help. It can help you cope. It can help you be a better caregiver.

Another thing you know when life is stressful, some people turn to alcohol or other drugs. They somehow think that that’s going to help them cope. It just doesn’t. Try to find some other ways to relieve your stress.

But remember, you can’t take care of someone else unless you’re strong and you’re healthy. And that means that you should keep up with your regular appointments, be sure to pay attention to any medical problems that you might have.

Taking care of yourself is… is not being selfish. I mean it’s doing what’s absolutely necessary to make you a better caregiver. If you become sick, if you get worn out, or burned out, you just… you won’t be able to take care of them. TBI is different than a short-term illness. That caregiving journey can take a long, long time, and taking care of yourself... it allows you to be there for your loved one and for the long haul.

Carl
Yeah, I didn’t do a very good job of taking care of myself, and now it’s starting to take its toll. My blood pressure is high, and other physical things are cropping up. Julie finally forced me to go in for an exam, and my doctor wasn’t happy. I’m doing better now, but I just… I didn’t feel I could take time for myself when Sam was having such a hard time. You know what I mean?

Michelle
I do. Even though this is new to me, I know that I’ve been letting myself go in a lot of ways.

Julie
You know Tom is going to need you more and more as he recovers, Michelle. It actually took me a while to realize this but taking time for yourself is actually the unselfish thing to do. Even if you just go for a run, or take time to actually go to the cafeteria at the hospital instead of grabbing something from a vending machine…

Michelle
How did you know?

Julie
Cause I did it myself. Still do sometimes…

Travis
Hey, what’s wrong with vending machines? I mean you can get a full, 3-course meal out of those things.

Tracy
Oh I think the point here is that it’s really each of your responsibility to pay attention to your own physical and emotional health. Overall, this plays a really important part in Tom’s, and Clayton’s, and Sam’s recovery. And there are some strategies that can help you do that.

Megan
Like what?

Tracy
Oh well, controlling your stress level is definitely one. You can use what I call the “Stress Busters” to relieve stress and help keep yourself calm throughout your caregiving journey, and all of the time, really. Helps always so... For example, you could try practicing deep breathing or something called Progressive Muscle Relaxation. Both of those are described in your Guide for Caregivers.

Julie
I was surprised by how well the progressive relaxation worked for me. Sam’s PT actually told me about it when I was having a rough time. He also taught me how to meditate.

Tracy
That’s good Julie, yeah. You know another stress buster involves managing your time wisely. Plan ahead so that you have plenty of time to arrive at appointments on time. Plan your day, your week sensibly, so that you’re not trying to you know cram too much in, get too much done in too little of time.

Oh and like I mentioned before, find time to exercise.  Exercise helps your brain release endorphins, which are those natural substances in your body that reduce the stress, make you feel better, just overall well being. Also gives you some time alone, which is important.

And then there are ways to relax and take your mind off your daily routine. Read a book; watch a movie or favorite TV show, spend a little time with a friend.

Frequently Asked Questions

What are Common Physical Effects of TBI?

  • Headaches
  • Sleep Changes
  • Fatigue/Loss of Stamina
  • Dizziness
  • Balance Problems (Tendency to Fall)
  • Sensory Changes
More information - Managing Physical Effects of TBI

What Physical Effects May Be Less Common?

  • Spasticity
  • Hemiparesis, Hemiplegia
  • Bladder/Bowel Changes
  • Changes in Swallowing and Appetite; Weight Loss or Gain
  • Visual Spatial Problems
  • Apraxia
  • Seizures
  • Heterotrophic Ossification
More information – Managing Physical Effects of TBI

What are Common Cognitive Effects?

  • Confusion
  • Slowed Speed of Processing
  • Attention Problems
  • Difficulties with Memory
  • Planning and Organization Problems
  • Difficulty with Decision Making and Problem Solving
  • Confabulation
More information – Managing Cognitive Effects of TBI

What are Common Communication Effects?

  • Does Not Speak Clearly
  • Problems Starting a Conversation
  • Word Finding Problems
  • Reading Comprehension
More information – Managing Cognitive Effects of TBI

What Communication Effects Are Less Common?

  • Dysarthria
  • Interrupting or Having a Hard Time Taking Turns in Conversation
  • Topic Selection
  • Writing
  • Non-Verbal Communication Issues

More information – Managing Cognitive Effects of TBI


What Are Common Behavioral Effects?

  • Frustration, Increased Anger/Aggressiveness
  • Impulsivity or Difficulties in Self-Control
  • Poor Judgment
  • Reduced or Lack of Initiation
  • Repetitive Behaviors (Perseveration)
  • Less Effective Social Skills
  • Changes in Sexual Behaviors
  • Lack of Self-Awareness
More information – Managing Cognitive Effects of TBI

What Are Common Emotional Effects?

  • Depression
  • Increased Anxiety
  • Mood Swings (Emotional Lability)
  • Changes in Self-Esteem
More information – Managing Cognitive Effects of TBI

Will our lives ever get back to normal?

The course of recovery after TBI depends on several factors. Your lives may return to “normal” or you may need to learn to adjust to a “new normal.” It can take time to adapt to the life changes after TBI. Although many problems will improve in time, some symptoms may persist throughout the person’s lifetime. Research has shown that many people who experience TBI do lead a life they find satisfying, even if it is not exactly the life they had prior to the injury.


How Should I Organize Medical and Military Records?

A notebook that includes sections for:
  • Personal information – This includes important facts, such as your service member/veteran’s Social Security number, military service record, emergency contacts, and allergic reaction to medications.
  • Military service papers – Keep copies of military service records, etc.
  • Medication log – Write down all the drugs taken, dosages, dates, side effects, and problems.
  • Medical reports, tests, scans – Ask for copies of all reports, scans, and tests, and file them in this section of the notebook. Put CT and MRI scans of the brain on a CD. Keep these to share with future providers.
  • Notes and questions – Include a three-hole punched notepad in your notebook. You can use it to take notes and then insert the sheets in the right sections.
  • Resources and information – This is the place to keep all the forms and information you have received at appointments.
  • Calendar of appointments – Use a calendar with enough room to write all of your appointments.

You may want to keep another notebook or file with the records needed to apply for medical and family benefits or Medical Evaluation Board/Physical Evaluation Board (MEB/PEB). (See Module 4 for more information about the MEB/PEB.) This file will help when you apply for financial aid, a job, or more medical care. When you are not using this file, keep it in a locked place to keep it safe.

This file could include:

  • Social Security card, military records, and insurance cards
  • Power of Attorney
  • driver’s license, birth certificate, marriage certificate
  • school and work records
  • tax returns and assets.


How Can I Tell My Child about TBI?

Communicate in an age-appropriate way what has happened to your family member with TBI. Protecting your children by withholding information may backfire. Children have active imaginations that may create a scenario worse than reality.
More information - Helping Your Children Cope


What Can I Do If Caregiving is Just Too Much?
Have a back-up plan for finding temporary or more permanent residential care for your family member with TBI. Discuss quality of life issues with your family and health care professionals. Your choices may include:
Give others permission to care for your loved one. Seek assisted living facilities and board and care homes—for those who have difficulty living alone but do not need daily nursing care. Consider nursing homes, also called skilled nursing facilities—for individuals who need 24-hour nursing care and help with daily activities. Skilled nursing care can also be provided at home by nurses you hire. Check with your case manager(s), VA liaison, and/or military liaison for residential care benefits that may be available to your family member with TBI.


What Can I Expect When My Family Member Comes Home?
Moving back home is an exciting step in the recovery process! Although the transition to home is certainly positive, it is important to be aware that it may also be stressful at times. Some families report that during the first few days or weeks at home, their family member regress and need more time to adapt to a new environment, even if it’s a familiar one. It is helpful to add structure and consistency right away at home by scheduling activities and rest breaks much like the schedule observed in rehabilitation. Recreational and occupational therapists are your best allies in this effort and they will work closely with you to practice community re-entry.
More information - Preparing for the Transition Home & Transitioning Home


What is the Family and Medical Leave Act?

The Family and Medical Leave Act (FMLA) provides service members/ veterans and their spouses who are employed by companies with 50 or more employees with up to 26 weeks of unpaid leave per year to care for a seriously-injured service member without losing their jobs or health care insurance.
For the most current information: www.dol.gov.
For More Information – LINK to Scene 14 - FMLA


What Temporary Housing is Available for Caregivers?
If your service member/veteran is being treated at a military treatment facility (MTF) or a VA Polytrauma Center, you may be able to stay nearby for free or at a low cost.
Housing for family members includes:

  • Malone House at Walter Reed
  • Navy Lodges
  • Fisher Houses at the VA Polytrauma Centers.
Nonprofit organizations may also make some apartments near treatment centers available to families at little or no cost. Check with your POC to find out what temporary housing is available where your family member is being treated.
More information - Addressing Everyday Issues


 

Related Information:
Your Emotional Health
Coping With Caregiver Challenges
Your Physical Health
Problem Solving
Stress Busters
Stress Test
Caregiver Self-Assessment
Glossary
Frequently Asked Questions
"It had been 15 months and he had slowly improved. But he couldn’t talk. He’d kind of start trying to mouth words, but he just couldn’t talk. And so, on October 21st, 2005, I’ll never forget that morning. I came in to the bedroom and I said, Fred, how are you doing?’ And he said, ‘Fine.’ Okay. I think he just talked to me. So I just turned around and went back into the kitchen, got his breakfast, came back in and thought, okay, let me try this again. I said, ‘Fred, how are you doing?’ And he said, ‘Fine.’ It wasn’t a lot at first, but he could talk." -  Denise G.

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