Challenges and Changes: Working Through a Brain Injury for Families and Caregivers
According to the Centers for Disease Control and Prevention (CDC), almost 3 million people across America suffer a brain injury each year. Many of these are life-threatening and require emergency treatment, hospitalization and rehabilitation. For others, a visit to the emergency department is sufficient, with no life-altering impact long term.
This article is designed to give both patients and caregivers an insight into what is involved in working through a brain injury.
The initial impact
The first hours, days and sometimes weeks after a brain injury can be extremely confusing, especially if the patient is in the intensive care unit (ICU), surrounded by a myriad of lifesaving equipment and medical professionals.
At this stage, the best thing that family members can do is take on assigned responsibilities such as communicating with the treatment team, calling loved ones and updating any social media information for the patient’s wider circle. They will also need someone to take over their daily tasks, such as caring for children or pets, banking, household chores etc.
The person injured may need a high level of support for some time to come, so it is important that you also prioritize looking after yourself - eat properly, get enough sleep, and do whatever you can to renew your energies whenever possible.
Even if the patient is unresponsive in the early stages, talk to them about friends, family and current events, as well as where they are and what has happened. Give them plenty of reassurance that everything possible is being done to help them. Try to exercise patience with any family members or friends who are struggling, or even uncomfortable in the hospital setting - everyone copes with trauma in different ways.
In these early days, gather as much information as you can to help you to manage insurances or apply for governmental benefits, such as Social Security Disability Insurance (SSDI), and file any necessary litigation. It is vital that you seek the advice of a personal injury attorney, preferably one that specializes in traumatic brain injury claims. Important information to collate includes:
- Social Security card
- Insurance policies
- Driver’s license
- Birth certificate
- Accident reports
- Work or school records
- If they lived alone, look for banking information, utility bills etc.
Ongoing hospital stays
Once medically stable, the patient will likely be transferred to another unit, where the focus will shift towards rehabilitation. The individual’s characteristics will begin to re-emerge and their therapists will evaluate any functions lost. It is common for patients to become quite agitated during this time, and this can be frightening for family and friends, but it can actually be a positive sign of a brain in recovery. It’s also not uncommon for physical recovery to take place more rapidly than cognitive improvement, so be patient.
There will be less setbacks as you settle into a routine of rehabilitation, visitations and optimism. Focus on being well-prepared to speak with many different representatives - hospital and social workers, rehabilitation therapists, insurance case managers, or representatives from other state agencies etc. - about claims, payments and benefits, legal issues, and eventually discharge options.
Following hospitalization and initial rehabilitation, brain injury patients will be discharged into rehabilitation programs specializing in their continued recovery. Others who have experienced a more rapid recovery may move to transitional programs focused on fine-tuning their cognitive skills before returning to everyday life. Some may be released without follow-up services, and it is imperative that you be diligent in their representation and ensure that they are receiving all of the ongoing support that they need moving forwards.
Once you are into the ongoing rehabilitation phase, the primary focus is on cognition and the way in which the patient is interacting with their environment. Whether it be to return to school or work, a care facility or the family home, the goal is to rebuild the skills necessary to prepare for as normal a future as possible. It is at this stage that a neuropsychologist will usually conduct an assessment to evaluate the abilities that have been preserved and what needs to be worked on. This is a task-oriented evaluation, and provides important information as to how to compensate for any deficits moving forwards and helps to create a plan for future treatments.
Returning to the community
There are many factors to consider when determining the most appropriate setting for the patient to return to, including care requirements, funding and support systems. Many return to their own homes, but depending on the extent of their recovery, their needs can vary significantly. Common long-term physical challenges may include:
- Visual impairments
- Hemiparesis (paralysis to one side of their body)
- Muscle spasms
- Loss of smell and taste
- Difficulty or slowness of speech
If physical issues persist, it may be necessary to consider home modifications. Various websites, including state agencies and rehabilitation centers can provide a wealth of information regarding your options, as well as the potential for funding sources - such as settlement payments, Medicaid or vocational rehabilitation programs - to assist you with these changes.
Typically, when a patient experiences persistent cognitive difficulties, it can be more disabling long-term than physical issues, and they may require more monitoring and support. These cognitive problems can include:
- Poor judgement
- Memory loss
- Issues with alertness and concentration
- Difficulty planning and decision-making
- Spatial disorientation
- Difficulty processing information
They may also suffer with persistent mood disorders or social challenges such as:
- Depression and anxiety
- Mood swings
- Agitation or anger management issues
- Sexual dysfunction
- Feelings of loneliness
Depending upon the extent of the injury, the road to recovery may be long and challenging, but thankfully there are many support resources available The important thing is to diligently work through every option and exhaust every avenue to ensure that you and your loved one receive all the help available.
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