10 Tips for Caregivers of Those With Brain Injury


10 Tips for Caregivers of Those With Brain Injury

clockHere are ten tips for a caregiver of someone with brain injury. My husband's tractor accident happened fourteen years ago. Here's some tips I've discovered along the way.

  1. For severe cases, find out the possibilities of getting on Medicaid, if your insurance isn't covering enough. There are waivers for brain injury in some states, where spousal income isn't counted. You may find the medical expenses really prohibitive without it.

  2. Read as much as you can about brain injury. And then stay connected with others who truly understand. Join a support group, get involved in a non-profit, go to health conferences, start a small church group of caregivers, or participate in a fundraiser. Just do something with a group that you can learn from and grow with.

  3. Recognize that the symptoms after brain injury are almost identical with dementia, so don't overlook materials such as "The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Ilnesses, and Memory Loss in Later Life," by Nancy L. Mace and Peter V. Rabins. Since we weren't in that "later life" category yet, I had the book for years before finally discovering that it was a treasure chest of practical tips for our family. It has had several reprints, and I have found it most helpful in recognizing and dealing with symptoms.

  4. At least for my situation, I have to remember to keep "change" to a minimum. When I move furniture and clean the house, I try to keep certain areas "change free" (i.e. my husband's recliner area, his dresser and closet, his bathroom toiletries). This is so he can find things that are important to him.

  5. Invest in two weekly pill organizers for your loved one (and one for yourself, if needed). This way you can fill one any time during the week, while the other one is being used. And speaking of medicines, don't dismiss them if behaviors warrant (especially if you are dealing with anger issues). I look at it this way: if he gets so bad I can't take care of him and he has to go to long-term care, they will have to put him on medicines there as well to keep him manageable. So, I may as well consent to their use, if it keeps him home longer.

  6. And speaking of psychiatric medicines, the person you chose to prescribe them is really important. We have learned from experience that a psychiatrist, not a neurologist or a primary care doctor, is the most competent in knowing the combinations and dosages needed in the more complicated cases. And by all means, make sure all your doctors know what the other is doing. You will have to alert them to any changes in behavior or symptoms, because changes will certainly occur as they develop a tolerance to one drug or the other. The answer isn't always to increase the dosage. We have found that it's usually an indication to try another medicine.

  7. Try to understand what short-term memory loss is like. A friend of mine lost her cell phone. Try to picture how vulnerable you would feel if none of the clocks in your house worked. What if your calender with all your doctor appointments got misplaced? That the only way you could remember if you did something like taking your pills, was to go check your pill organizer? That every time you started reading a new chapter in a book, it seemed like the first chapter? You can see what an impact memory loss can have.

  8. Don't overlook children and young people in the family. They feel the pressure and stress the same as adults, but it may manifest itself in different ways. Don't take it for granted that they are handling events well, just because they appear normal on the surface. They need straightforward, age-appropriate communication as soon as the diagnosis is in. They must know that behaviors of the caree may not be normal, but that you will do all you can to keep them safe and well-cared for. Find ways to give the youth special attention, using aunts and uncles, or other mentors, as "substitute parents" when you can. Never hesitate to get professional counseling for anyone in the family, as needed.

  9. Keep a sense of humor. This tip is for all caregivers, but you will find ample material with someone with brain injury, especially with short term memory loss as a factor. Don't be afraid to laugh with your carees; it can do much to uplift your spirits and reduce depression.

  10. It seems quite common for those closely related to brain injury and its aftermath to have a strong faith. First of all, brain injuries usually result from accidents, strokes, brain tumors, and other miracle-laden traumas. Second, the therapies and recovery time are so lengthy, that one has ample time to grow spiritually, along with the physical and mental improvements being worked on. My tip is to expect a faith makeover and encourage it.

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What terrific ideas and practical wisdom. I especially like #5. I can't tell you how many times I had been rushing around getting dinner for Mom, Hubby and myself and finally have Mom's food hot on her tray ready to take it up to her only to find I forgot to fill the med box so her pills aren't ready! So frustrating!