Compensatory Strategies for TBI Caregivers

Compensatory Strategies for TBI Caregivers

Immediately following my husband’s TBI and for a long time after, I noticed that my ability to concentrate grew worse and worse. I couldn’t focus. I would start several things but didn’t finish them, and this resulted in loose ends hanging all over the place. I talked to Hugh’s occupational therapist but forgot to ask her the one question that was bothering me. I called the pharmacist but did not remember to ask about drug interactions with his new medicine. I put the girls’ school papers on the kitchen table but never signed them.

It’s well documented that stress affects our ability to concentrate, remember, and sleep, and I don’t think there are many stresses equal to the days and weeks immediately following a severe traumatic brain injury.

Managing our home, my job, and parenting got lost in a haze of Hugh’s medical needs until I felt like I was handling all of it poorly and making myself sick in the process.

After several weeks of chaos, I realized I had to figure out ways to stop operating in a fog, and that meant I had to create new habits. In hindsight, I realize I should have taken steps earlier, but I wasn’t prepared for how long-term and difficult Hugh’s rehabilitation would be; so I’m offering these five compensatory strategies that will help, especially if you make them habits.

Habit One:

Ask yourself, “What do I need?” every day. Avoid answering, “A miracle!”

When we ask this question, we are forced to name exactly what we need to get through the day.

  • I need to talk to a counselor about Hugh’s lack of initiation.
  • I need someone to help my kids get their school supplies because I won’t have time tomorrow.
  • I need a big dark chocolate bar!

Tip: Simply naming something helps us find a way to make it happen. You can immediately start searching the Internet for information or put a call into a doctor’s office. You can call a friend to give you a break. This is the precursor to your TO DO list, because it goes beyond simple tasks and includes personal needs.

Bonus: By naming what we need, we respect and value our own time and health. This is also a great strategy to help us plan ahead. After my husband’s accident, I caused my children to miss out on a few important events because I was too stressed out to plan ahead. Using this strategy, I might have made arrangements for my children on the very day I heard there were sports tryouts or a special school program on the calendar.

Habit Two:

TO DO - Write it down.

Each evening, write down what must get done the next day — not everything you want to get done, but what must get done (think April-15th-tax-deadline kind of list). This list can ease your mind for restful sleep and help you start each new day with clarity and focus. Example:

  1. Make appointment for counseling session
  2. Schedule a ride for Anna and Mary to dance team tryouts
  3. Call O.T. about shower safety
  4. Pick up Rx at pharmacy (and toilet paper!)

Tip: Keep the list simple and don’t write down more than is humanly possible!

Bonus: Checking these things off feels really great! You will sleep better if you are not worried about remembering something you must do tomorrow. Accomplishing something concrete relieves stress.

Habit Three:

Delegate.

I worked on enlisting help where I could find it. Friends or my in-laws could provide rides for my two children. Neighbors could pick something up from the store. My children could keep an eye on their dad while I took a short walk around the block.

Tip: Look for easy-to-do things that take time away from more important work and see who is available to step in and help. Ask for help in a pleasant way, and you are more likely to get it!

Bonus: More time = Less stress = Better focus!

Habit Four:

Use every shortcut available.

Do the sheets really need laundering every week? I hate to tell you how many weeks I’d go before changing bed sheets — and nobody noticed. Do you need a hot meal for dinner every night? When in crisis mode, forget perfectionism and learn to embrace messy living for a while.

Tip: Food is food. Sandwiches, soup, and bagged salads work in a pinch and can be healthy. Try “almost homemade” — using some store-bought staples with a few sides to cut down on cooking time.

Bonus: Less stress, more time, easy to prepare. And if your house is not as perfect as it once was, you can proudly say, “My priorities are in the right place.”

Habit Five:

Ask doctors and therapists for handouts to explain deficits or symptoms.

Tip: There may not be a handout, but the therapist might try to make you one; or they may refer you to a reliable source online. Reading about the quirky deficits that TBI creates ensures that you will get the correct information and not miss any details in verbal explanations. Deficits in executive function or left neglect can be hard to understand.

Bonus: You will be better armed with information if you digest complex information when you are relaxed in your own home. At home, you can refer to notes and look up words you don’t understand.

Only when we pay attention to how we feel can we can recognize that we may need to make some changes to feel better. If we pay attention to our physical symptoms and our thoughts, we can make small shifts in how we do things that result in big changes.

If you find yourself stressing, rushing, and feeling like you can’t get it all done, take some time to assess your situation and find ways to make it better instead of powering through. You may be powering through to a serious health event of your own if you keep up an unsustainable pace.

As caregivers, paying attention to our own needs serves everyone — remember that our inner peace is a priority, and we will pass this peace along to our whole family. Everyone wins.

Comments (11)

I don't see how this can be implemented a few weeks after a severe TBI. Where's the coma, the 7 month hospital stay, etc. There was no one who was capable of watching my daughter. Even professionals didn't have the strength. After a year, no one was willing to run errands. We are on year 5 now. My broken heart is the biggest obstacle.

After near burnout this spring (5 years in to TBI caregiver mode) I realized I had to get some help. My husband requires ongoing cueing throughout the day to transition from task to task. Naps and rest are essential at key times for his optimal daily functioning. I decided to send out an email to key friends (that were still in our life) and family members asking for the commitment of a quick phone call once a day. I set up an info session with our Occupational Therapist and some people skyped in from other provinces. Once the detail of why and how his new brain works and what he needs and why was explained by a professional, more people seemed to get it and most were in shock. They had no idea how demanding the cueing is for the caregiver. I sent out a 5 week schedule where one friend calls at 8 AM to advise him to look at the weekly and daily schedule (that he and I do every Sunday night) and to put the coffee on and start his day.  At 11 AM another friend calls him and advises him he needs to stop what he is doing and start heading to your room to have a rest. Then again at 3 PM another friend does the same. I try to be cognizant of people and how busy they are.  These are quick somewhat scripted calls and they help alleviate my pressure. I am still cueing the other 60 plus times a day but it sure helps to have these parts taken care of. I hope this idea is of some help to some of you!​

So simple yet so difficult to put into action until you put it into words. Thank you so much, your article opened my eyes (and mind).

Great tips! You pretty much covered all that contribute to caregivers's stress.

Except that I would suggest trying NOT to delegate rides for kids. Because there is no such thing as too much time alone with your children. Giving a ride provides precious time to check on what's bothering them or make them happy, or not saying a word and just enjoying being with them. Giving you and them a few minutes of "boring life", like an ordinary family. 

N.

A great read thanks and all the best for you

This is a wonderful article.  We learned the important advice of asking ourselves "What you need" through counseling and it has been invaluable advice.

I particularly like this very true statement:  As caregivers, paying attention to our own needs serves everyone — remember that our inner peace is a priority, and we will pass this peace along to our whole family. Everyone wins.

Thank you for such important reminders! 


 

Caregivers are not the ones who need to learn strategies. It is the head injured individual. Caregivers are clueless to what assistance their head injured individual needs. I was in groups who learned their head injuries by cognitive remediaiton classes and all symptoms were all different. As different as their compensatory strategies...Doubt if caregivers are competnet enough to do this...

Thanks for these as receiving this kind of practical advise from a health care practitioner is often not forthcoming. It all goes doubly so if the caretaker is coping with TBI.

your nearly there  knowing what it is like for the person with the tbi... at first read i thought you were the patient. if stress causes all that then it is also the affect of a brain poorly!. sad thing is organizing the things you advise we coul'dnt do. i cannot  multi task nor plan/organize. i have no one to help me with deligate. . your a great carer. wish i had you

What a wonderful article. I agree wholeheartedly with learning to prioritise and understanding ones own needs. Although an OT myself and living in the world as a full time carer I began to feel completely overwhelmed until I implemented very similar techniques and can now recognise how I have improved which also assists my son. Thank you.

Great tips! Not only are survivors "allergic" to stress but so are caregivers!