Hello and welcome, first off let us start off by saying congratulations. Because if you are here chances are, you or someone close to you, has suffered a Traumatic Brain injury and survived.
Not only survived, but has someone that truly cares for them. Otherwise you would not be reading this, so good for you for having a heart and caring. One thing to understand is that family and friends are affected just as much as the actual person that has suffered the injury and unfortunately in some cases even more.
For a TBI survivor, their family, caretakers and friends things can seem very daunting and the feeling of bewilderment can take over. Like all major tragedies in life, life becomes altered and decisions need to be made that most never expected to have to make.
For family and friends It is important to maintain a positive outlook and not let the experience consume you entirely. Most will probably spend hours and days on end at the hospital waiting in hopes for some sign of recovery.
This is the most difficult time wrought with uncertainties and sleepless nights. If you are at this stage you must make a concerted effort not to be overcome by your emotions. This is going to be a long road and you must conserve your strength. You can do this.
As hard and selfish as it may seem, you need to make time for yourself. Try to find positive outlets like exercise, long walks, yoga or anything that will allow you to recharge emotionally and energetically.
Believe us when we tell you, at least in our case, Jessica had no clue if we were there or not. Going to the hospital a half hour later or leaving a little early so you can gain clarity, get a little needed rest and recharge is not a bad thing to do.
In this article we are going to try and cover some of the obstacles that you may have to deal with as a TBI survivor and caregiver. It is based on our experience and is meant only as a reference. All TBI injuries will have different outcomes and every case is unique.
Let’s begin at the start of the hospital stay. (For an actual daily blog of our experience, as we lived it, you can check out the day by day page on this site.) After the shock of finding out that Jessica had been in an accident and trauma hawk lifted to a hospital where she lied in a coma, the most frustrating thing we encountered was that no one could tell us what was going to happen.
For example if you break a bone or get stitches you can count on some type of timeline for recovery due to previous experiences, that is not the case with a TBI. With TBI there are no guidelines only very ambiguous reference points because no one TBI incident is the same.
There is no way to determine how long, how bad or how extensive and severe the damage will be. All you can do is wait and see. This can be one of the most trying times and it is important that you take care of yourself.
You will do no one any good if you get run down and sick or irritable because you have not slept or eaten. This may also be a time to seek a psychologist or locate a support group or therapy for your own mental well being. This is tough stuff and its going to be a long road to travel, but when your loved one gets better it will all be worth it.
The other thing to prepare for is that TBI will affect everyone differently. It not only effects the physically but also the personality and emotional characteristics as well. Some people will change dramatically and not even come close to resembling their former selves.
You may have a person who loved pizza prior to the accident now say they hate it. You may have someone that before was even tempered and shy change to an overbearing and aggressive person. There really is no way to tell what the long term affects will be.
Then of course there is the treatment itself. Because there are so many unknowns even for the well educated & experienced doctors it is hard to anticipate what will happen.
One decision that we wrestled with was to have a device placed to monitor Jessica’s internal brain pressure. This was done because of her mother insistence that was based on what she learned after doing her own research and what some doctors recommended.
Luckily for us there was great optimism on the part of everyone involved. The Nurses and Doctors that cared for Jessica were very attentive, caring and professional.
For others you may encounter Doctors with not so great bed side manners that will throw around clinical terms such as “vegetative state” or “They are not improving on the Glasgow scale…” that may be very unpleasant for many to hear.
In particular if it is your son, daughter, husband or wife they are saying it about. If this happens to you, just remember what we already discussed, they don’t know for sure what is going to happen any way, so keep your strength and poise and keep believing.
Keep in mind they are just in “doctor mode” or “clinical mode” meaning they are working and are taking care of a lot of people. More than likely they are in a concrete sequential way of thinking at the moment, kinda like Joe Friday “Just the facts ma’am.”
There is a lot of pressure in Trauma care and we are all humans. Everyone wants to see patients survive and prosper, in some cases no one more than the doctors or nurses that attend them.
All the more reason you need to take care of yourself and maintain your strength and composure. This is not a short distance race but rather one that will last for a lifetime.
Another part of the experience to prepare for is the reaction of everyone you know. At first there is a lot of concern and support by friends, relatives, neighbors and the community. But then life goes on and as time passes the shock for most subsides and everyone recedes back to their own life.
This is perfectly normal and should be expected. After all we all have our own problems to deal with. Jobs, taxes, family the list goes on and we are all in the same boat so to speak.
It is not a good idea to hold it against anyone that they are not at the hospital everyday like you or they don’t come by and visit as much as they used to. Everyone deals with things differently, it is imperative you avoid any negative emotions like these or the ‘Why me/us” or “Poor ole’ me” factor.
This negative energy will rob you of the perseverance and patience you will need to be a good constructive caregiver- friend- family member-or whatever. Hopefully this site will open your eyes to all the wonderful survivors that regain their zest for life and raise your spirits as well.
Other difficult decisions to make are about the care itself. How long will your loved one be able to stay in the hospital? When will she be able to leave? Will you be able to care for them at home or should they go into a home? Will he be better off in a nursing home? What rehabilitation centers to go to? Where do we get the supplies needed, diapers, wheelchair, lifts? How are we going to cover all these expenses?
The realty will soon set in as do a myriad of medical and a host of other expenses and how to deal with them. Fortunately in some cases you may be covered under your insurance.
This can be changing with the advent of the Affordable care act (AKA ObamaCare) that can cap out of pocket expenses when it comes to medical treatment. (Just saying, this is no time to become political) Again this is a case by case type of situation. But none the less, something that will have to be delt with. SO prepare yourself.
Hopefully you will have an outreach program or a case worker within the facility that your loved one is in that will assist you with some of these things. This is can be a daunting and frustrating time but you can maintain the course and keep your perspective.
Finding and dealing with lawyers, hospitals, insurance companies and rehabilitation centers can be as stressful as dealing with and surviving the accident itself. It may be best to address these types of things first thing in the morning when you are fully rested.
If you do seek legal action you certainly want to be represented by a trusting and knowledgeable lawyer.(We are in the process of making a check list of things to go over to help you make the right decision on who should represent you and the best steps to take in order to make that decision.)
One tip here, just because they have a billboard or a TV commercial doesn’t necessarily mean they are trustworthy, professional and good. All that shows is they spend a lot on marketing and advertising and those billboards and TV commercials are expensive.
If you do decide to pursue legal action and win a settlement you will be faced with more decisions. For example how and what to do with the money. Structured settlement, an annuity, mutual funds what is best? In some cases, if the settlement is not that large and disability is needed, a trust like a special needs trust may be a good option to pursue. This special type of a trust will still allow the injured to continue to receive benefits if needed.
Like I said before every case is different but I will tell you this, a structured settlement is like a bad in-law, basically you are stuck with it. Otherwise J.G. Wentworth would not be making so many commercials. The best thing to do if you are in this situation is to contact a competent financial adviser or competent CPA.
I cannot express how important this step is to study and understand before making any decision. We will have more information on this as we develop this site in order to help you make the best and most beneficial decision.
After some time Jessica came out of her coma and started her long road of recovery. This is another point where you need to research and find out what is best for you. There are a great many rehabilitation centers and some better than others.
Make no bones about it, whether they want to or not, physical rehabilitation needs to continue and be a major focus in order for the brain to create and find new neuro pathways in order to regain physical functionality.
You will need to do some leg work and find one that is best suited for you and one that you can afford. We were fortunate and found one in Jacksonville called Brooks.
This was our second stop before heading home. The staff was very attentive and professional, the facility was clean and had a friendly environment. The experience was positive and Jessica slowly started to come around.
Up to this point, like so many mothers, Jessica’s mother never left her side, but Brooks proved to be a challenge due to the location being more than four hundred miles from Jessica’s home.
Thanks to a wonderful charitable organization called the Ronald McDonald house, Jessica was not alone, her mother was able to be with here during this phase of recovery.
We cannot express enough gratitude and appreciation for the Ronald McDonald house that has helped so many and maybe a source of help for you as well. Who would have thought a Big Mac could do so much.
Soon days turned into weeks and weeks into months and Jessica continued to improve. Before you knew it she was back at home.
Now at home she would need to continue her rehabilitation and there cam the next set of decisions. Where would she go and how would she get there? These were questions without answers for the moment.
After looking over several options it was decided that she would spend three days a week going to a rehab center called Health South that was located about 45 minutes from her house.
The next obstacle was how to get her there. By now everyone was getting back into a normal routine so getting her there was tough. We all took turns driving Jessica and waiting until her re-hab was over to bring her home, sometimes missing some work, eating lunch in the car while driving down the freeway.
To this day Jessica needs rehabilitation and like most people and exercise it is not tops on her list of “Things to do.” but it is better than the alternative.
Now the big thing she faces is transportation. Getting back and forth is difficult at best so things like continuing her education, going to re-hab and just plain having a little fun are difficult.
Even getting a job to help pay for incidentals is tough. Apart from the transportation simple skills are difficult to achieve when you have paralysis on the right side of your body.
But Jessica is not giving up and is not looking for sympathy, just outlining the things that she is facing and that others may as well.
That is the reason for this site, to give hope and inspiration to those going through the same. We ask you share with us your story and let us know how you are doing, what problems you face and how you overcame them if you have.
It can mean so much to someone else out there, we know we’ve been there, got the T-shirt, portrait and the novelty coffee mug. So please share your story it can make the world of difference to others.