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Traumatic Brain Injury Care

Just the basics

Traumatic-Brain-InjuryCare for persons with Traumatic Brain Injury (TBI) is about patience and understanding. No two TBI’s are the same, and each person has his or own challenges to wrestle with. Allwel has over 14 years of experience in providing services to persons with traumatic brain injuries, working with many of the challenges of memory loss, physical challenges, and impulsive behaviors. Our staff receive specialized training to understand what each person may be facing, and use patience and instruction to assist them in achieving their goals of remaining as independent as possible.

Allwel’s team of case managers, nurses, and social workers provide a complete approach to caring for the physical and emotional needs. Our team also provides help with time sensitive and financial responsibilities that are associated with remaining at home. Examples include the taking of medications, shopping, the paying of bills, the scheduling of and getting to important appointments, or simply getting out into the community for visiting and social activities.

Below is an introductory guide to caring for someone with Traumatic Brain Injury, as well as some area resources for both participants and family caregivers. Remember, caring for individuals in general is about taking care of the person and taking care of the person providing the care. The more support you take advantage of, the better you will be able to help your loved one.

What to expect when caring for someone with a Traumatic Brain Injury

Traumatic Brain Injury can affect thinking, language, judgment, and behavior. Again, no two injuries are the same, so it is difficult to measure one person’s progress against another. There are certainly oddities that you will find when caring for someone with TBI, such as their ability to do certain tasks without any issue at home, but be completely unable to in another person’s home, or in the community. Caring for persons with TBI requires a lot of trial and error, and finding new ways to do the same things but in different places. Last, we believe in having a real conversation about what to expect, so please excuse our frankness.

  • Always keep in mind that no two days will be the same. Mood and energy level have a lot do with how the day will progress. Things that happened yesterday may not happen today, and things that did not happen yesterday may, indeed, happen today.
  • Depending on the extent of the Injury, and where it is located, there will be various challenges associated with memory, initiative, and impulse control. It may require a great deal of patience while communicating and having things taken care of.
  • Depending on the extent of the injury and the person’s cognitive abilities (how he or she is able to be mindful of safety and situation), you may need to discuss who will become responsible for all financial and health related decisions. This means considering who will be the Health Care Proxy or Power of Attorney (will make health related decisions on behalf of your loved one), and who will be the Guardian/Conservator (will make the financial and care decisions). We always recommend speaking with an attorney as early as possible to make sure that everything is in place should the unexpected occur. There is more than can be generally imagined (even by family who are professionals and do similar work in their day to day lives) when dealing with a person’s finances, a home, or how the transferring of money amongst family can impact the ability to provide care at its later stages. As difficult as this conversation can be, it is one that will likely have to be had, so have it earlier rather than later.
  • Download our guide to homecare and start parsing out who will be responsible for the items described. Remember that this is as complete an overview as possible with the understanding that each plan for care will have some special items specific to that person. Having a frank conversation amongst the people who will share in the caregiving, who and what each will do and how often, as well as what you may need from a professional caregiving agency to supplement is of utmost importance. There may come a time when there will be a need for around the clock care. You will need to answer how this will be achieved.
  • Establish a caregiver support system. Things come up in our daily lives, but the responsibility for making sure that the medications are taken on time, correctly, that there is food, that the person is safe will not change. Make sure that communication between caregivers is good, open, and well planned.
  • Make a back-up plan right away. Who will be available for unexpected situations, and whom will they call? Which doctor and which hospital to go to? Who is the backup to the backup?

Routine as familiarity and comfort

Many of the triggers that bring out behavioral outbursts and negative emotions from persons with a TBI can be prevented by establishing and keeping to a consistent routine. Same wake-up time, same time for breakfast, keeping things in the house in the same places, same times for and types of activities. This is very important. Having the person do as much for themselves as possible is equally as important. Just because a person cannot do one activity does not mean they cannot do another. Experiment and try again, often. Again, what can be done one day may not be able to another, but the reverse can also be true. Just keep in mind what will be safe and what will not.

Communication with the person being cared for

It goes without saying that patience is the essence of all communication as your loved ones communication abilities may have been drastically changed. Sometimes it’s just the ability to physically speak, but they are able to understand everything that is said to them. Sometimes the speed at which information is processed may have been severely affected, and there will be a point where even the simplest tasks will have to be broken down and described in each component. If communication is a challenge, you may want to present choices that are limited (“would you like to wear your red shirt or blue shirt?”), rather than open-ended questions (“which shirt would you like to wear?”).   Limit ideas and tasks to one at a time.

Feeling frustrated will be normal. Losing patience will happen. Take a break. Recharge. Ask for help from your backup.

Caregiving is a journey so pace yourself, and don’t be embarrassed or feel less involved by asking for support when and where you need it. Remember, the dignity and love you are preserving for the person you are caring for makes all the effort and challenge worthwhile.

Local and Internet Resources

Below is a short list of resources. By no means is this exhaustive, and is here just to get you started.

Resources on the Web

The Brain Injury Association of New York’s website provides information and advocacy efforts for persons with TBI and their families.

Traumatic Brain Injury Support is another online resource at their website.

Western New York

Headway of Western New York, Inc. (People, Inc.)

Headway of Western New York provides a number of diverse TBI support groups in Buffalo, as well as surrounding rural areas. More information about the various groups can be found at their website, by calling 716-408-3100, or by email at support@headwayofwny.org.

Headway also supports the Regional Resource Development Center (RRDC) for the administration of the NYS HCBS/Traumatic Brain Injury Waiver. The Buffalo RRDC provides oversight of the TBI Waiver for Cattaraugus, Chautauqua, Erie, Genesee, Niagara, Orleans, and Wyoming counties. Call 716-408-3120, email at tbiwaiver@headwayofwny.org, or visit their website.

The TBI Waiver is a person centered choice program served by a number of area agencies. Headway can assist in helping you know which organizations can service your area and how to contact them. Headway has a wonderful, free resource guide that can assist you in finding what supports are available to you as a caregiver or a person with a Traumatic Brain Injury.

Buffalo Hearing and Speech Center – BHSC provides a Brain Fitness program that addresses individuals with Traumatic Brain Injury, Stroke, or early onset memory difficulties.  They can be reached at 716-885-8318 or by email at askbhsc.org.  More information is also available at their website.

Photo Credit: Tomasz Mikołajczyk

Greater New York City Area

Visiting Nurse Association of Staten Island The Five Boroughs

VNASI supports the Regional Resource Development Center (RRDC) for the administration of the NYS HCBS/Traumatic Brain Injury Waiver. The New York RRDC provides oversight of the TBI Waiver for Manhattan, Bronx, Brooklyn, Queens, and Staten Island. Call 718-816-3500 or visit their website.

Self Initiated Living Options, Inc. Long Island

(Suffolk Independent Living Organization SILO)

SILO supports the Regional Resource Development Center (RRDC) for the administration of the NYS HCBS/Traumatic Brain Injury Waiver. The New York RRDC provides oversight of the TBI Waiver for Nassau and Suffolk Counties. Call 631-320-1662 or visit their website.

The TBI Waiver is a person centered choice program served by a number of area agencies. VNASI and SILO can assist in helping you know which organizations can service your area and how to contact them.