Caring for Your Loved One
This information was written by parents who have a child with an acquired brain injury. The information is subjective and written from their experiences. We are not endorsing any therapy or treatment.
Caring for Your Loved One
If you feel something is wrong or needs to be investigated further, do not take no for an answer. Always use honey first and then vinegar if necessary. For example, I would like a blood cell count on my daughter but the doctor feels it is not needed, I express that I would like the lab work done anyways just to be sure. I like to add in at the end that I would hate for something to go terribly wrong and for something to happen to my daughter when it could have been prevented. This makes them worried about liability issues.
Be proactive in watching for skin breakdown, muscle tone and spasticity. It is important to rotate your loved one at least every two hours to take pressure off of bony prominences. You don’t have to be a professional physical therapist to do simple massages and range of motion exercises. Muscles need to be rubbed it down and moved daily to prevent them from becoming contracted. You can request Botox injections, as well as prescriptions for AFO’s (helps to prevent foot drop) and hand splints.
I like to give my daughter warm baths every day to improve circulation and help her bottom from getting a rash. Aveeno colloidal oatmeal packets are great as well as Epsom salt and baking soda. I like Arnicare cream for bruises and around swollen areas. Jergens ultra healing lotion is also a great moisturizer. Using a handheld massager with different head attachments are wonderful for promoting circulation and massaging.
Stimulate your loved one daily. Pay attention to their heart rate, facial expressions etc. to notice how they are communicating with you. To them about anything and everything and address them by name. Reading, listening to music, and using light boxes or drawn out patterns are useful. Understand that most patients suffer brain injuries have cortical visual impairment to some degree. Understand what CVI is and get into contact with your local DARS representative who can assist you with visual aids and communication devices. Search for physical, occupational, and speech therapists. They will come to your home.
Slow down and notice all of the small improvements and understand that patients with brain injuries have lost their “filters” for a while and it takes time to adjust. This is known as the cocktail party effect. If we are in a crowded restaurant with friends and there are numerous other activities going on (Music playing, silverware clanking, other people talking) we can turn down the volume on those other things if our friend starts to speak to us so that we can focus. When the brain is injured it is bombarded with stimuli and it can be hard to focus. Try to do one thing at a time. If you ask for a hand to be squeezed don’t give up and think they can’t do it because it doesn’t happen right away, give them a few moments to process and try. Taking part in their recovery is an active decision and it takes a tremendous amount of effort on patient’s part to do a task that seems minuscule to us. They get tired easy and need to rest often.
Know all of the medications your loved one is taking, understand any side effects and check for any drug interactions. Do not take doctors words for gold, they are human and often do make mistakes and things get over looked. If you do not believe the medication is necessary anymore advocate to get them off of it.
Start keeping a journal of daily events with dates and times and how your loved one is doing and reacting to medications and formulas. Also, special needs equipment tends to be expensive, so I will give more information on homemade contraptions I have made with videos of examples. It’s good to have a journal to write down all of the doctors that will be involved in your loved ones life. It’s hard to become a medical expert in many different fields.